Login required to started new threads

Login required to post replies

Illiac Artery Endofibrosis - I've got it.
 
  
So I've been trying to sort out some recovery issues for about two years now. It's been a frustrating process. I've done blood panels, worked with nutritionists, nothing would resolve my muscle fatigue issues at higher efforts. Someone on ST mentioned I should explore Illiac Artery Endofibrosis as a possible cause. Unfortunately, they were right.

I did an Ankle Brachial Index on my bike this morning at the vascular surgeons office and sure enough, it came out positive. I have mixed feelings about this. Obviously, I'm bummed - No more racing bicycles for me. On the other hand, I'm a bit relieved. Tryng to live the roadie lifestyle with this has been painful and demoralizing.

I've pretty much decided not to pursue a surgical correction for a couple of reasons:

1. My V02 Max is 50. I'll never be able to go out and crush peoples souls even when I'm at 100%.
2. The corrective surgery is REAL surgery and carries risks - not just immediately after the surgery but there's a risk of infection for the rest of my life.
3. Even after the surgery, there's no assurance that the problem won't come back.
4. I'm 41 and my days of racing would be numbered anyway.
5. My vascular surgeon seems to think that doing nothing may allow the problem to correct on it's own (though racing would make it come back).

-s
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I feel for you as its a really difficult choice to make i.e stop cycling or go for the surgery but some reports do appear optimistic? http://sportsmedicine.about.com/...a/Arteriopathy_2.htm

Good luck
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
Here's my experience, having lived with it (undiagnosed) for at least 25 years. My problems began in the 1980s, when I was doing a fair number of triathlons. Right before Kona one year, I started getting odd left leg pains. I raced well that year, but the next couple of years were increasingly frustrating and I eventually gave up triathlons. I was still able to swim, could do some cycling, but couldn't run any more. Over the years, my leg became increasingly painful and my cycling increasingly frustrating. My swimming held up because I learned a two beat kick and then a no beat kick. :) Eventually I also started having right leg problems, then a dvt/pe which really seemed to increase the pain and dysfunction. Bilateral iliac artery endofibrosis was diagnosed quite accidentally in 2011. I had bypass surgery on both sides and am loving life. Too bad I lost 25 years, but at least they found it and it could be corrected. My n=1 experience, though, is that it was progressive; there was no improvement with decreased activity/intensity. Maybe it does improve sometimes, I have no idea. It certainly didn't for me. I can say that I didn't realize how much of an impact it had in all areas of my life until I had it corrected.

None of which is meant to minimize the dangers of the corrective surgery or imply that everyone has positive outcomes, nor am I suggesting that the only option is to go ahead with the surgery. Obviously you have to do your own risk/benefit analysis. The surgery worked for me, but I know someone who did not have a good outcome and it is undoubtedly a risky surgery (there was a pro cyclist who died post-surgery, as I'm sure you have seen). Whatever you decide, I can't emphasize enough how important it is to see a vascular surgeon who is familiar with this in athletes. The first one I saw was not and it was not a good experience.
If you would like to talk privately about it, feel free to message me. Good luck with whatever you decide to do.
Last edited by: HeidiC: Oct 17, 14 13:43
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Hi Heidi,

Thanks for the response, do you remember what the ABI ratios were at your diagnosis?

How did this impact your daily life (before surgery)?

Also, I've never been a runner. I'm curious if I can start running and swimming to help take some of the place of cycling. My ABI was .88 Right and .78 left.

-s
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
At rest, my ABIs were around .7 on both sides. With exercise (running), it was about .3 on the left and .4 on the right. With respect to my daily life, my first walk around the block post-surgery was like a revelation. Within two steps, my thought was, "I can't believe how much different this feels and I cannot believe I so completely lost sight of what 'normal' is like." My legs were so light and pain-free that I felt like I couldn't keep up with them, a completely different experience from walking pre-surgery. It had gotten to the point that I couldn't keep up with my husband while walking the dogs, and he is a slow walker (fast cyclist, slow walker). Needless to say, all that frustration did not have a good impact on my mood and general outlook on life. I'm a much happier person now. The reality is that I love swimming and I love riding my bike (I hope to some day love running again) and that the quality of my life suffered when I either couldn't do those things or when doing them was incredibly painful and frustrating. I'm two years post-surgery and I still get on my bike and feel like doing a victory salute over how awesome it is to just be out there riding my bike, pushing the gears, and enjoying the outdoors.

The advantages you have are that you know what's going on, yours is currently not that bad, and it seems you're not in constant day-to-day pain. You can monitor it and see what happens. I'm not sure running will work as a substitute--with my issues, I couldn't run at all; my calves turned into knots and my legs became tree stumps with the lack of circulation. I've been a swimmer a long time and was able to change my stroke so I was just dragging my legs around; that worked well enough that I could still win some Masters national championships in swimming, although I did end up having surgery on both shoulders, likely due to the lack of kick.

 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I had iliac and femoral artery endofibrosis.. It will NOT correct on it's own. Sorry, but if your vascular surgeon says it might then he is an idiot. The only fix this is to have surgery to fix it. If you don't have surgery then you better be prepared to not run or ride again at anything other then a low recreational level - forget about racing. I would not recommend going to a regular vascular surgeon since very few are familiar with this condition in endurance athletes, have experience with the surgery on athletes, or even how to do an angiogram that will show if the inguinal ligament compressing the artery is the cause. Contact Dr. Kenneth Cherry at UVA in Charlottesville, VA. I live in Atlanta so I had to travel to see him and have the sugery. He is the man when it comes to this condition with cyclists and triathletes! I know 5 other athletes (mostly cyclists) personally who have also had the surgery, and also by Dr. Cherry . If you are on the west coast there is a vascular surgeon at Stanford who trained under Dr. Cherry that I would also recommend, but I don't recall his name. I had the surgery 4 years ago and have been problem free since. My only issue post surgery was that I had some major muscle imbalances because it took 5 years for me to finally get an accurate diagnosis, so it took while to get those imbalances fixed through strength training. Yes, it may could come back but it might not. The issue with mine was the inguinal ligament was compressing the artery and I had damage to both the femoral and iliac artery. As part of the surgery the inguinal ligament was released and the arteries were widened so chance of it coming back aren't super high. For me that was a risk I was willing to take because without surgery I couldn't run or ride any more at all, and my racing days would have been over. Yes, it is a major surgery but the recovery is actually fairly short and easy. I'd be happy to talk to you about the surgery, recovery , etc. since I've been through it all. If I was faced with this again I would do the surgery again. Feel free to PM me!
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I'm not who you replied to, but thought I'd reply based on my experiences. I can't remember exactly what my ABI was in my effected leg, but I do know it was much lower then your numbers. I could not run at all. It effected my leg tremendously when running, especially on uphills - my foot would go numb, and it felt like a had a super tight blood pressure cuff on my calf and quad. I had no issues is daily life physically, only when running or cycling, but that is such a huge part of my quality of life that mentally and emotionally it had a huge impact on me.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
So funny reading you comments. I literally cried when I started running and cycling again post surgery because after 5 years of constant pain I could finally run and ride pain free again. I joked that I was back to having 2 legs again .... and I forgot what that felt like! :)
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Heidi, Little Red,

What else was involved in your diagnosis other than the ABI? My doctor also wants me to do an angiogram to pinpoint where exactly the blockages are. I'm guessing I should do the follow up visit to confirm the diagnosis.

Also, did you both use Dr. Cherry for the surgery? Dr. Cherry recommended my Surgeon, Phil Church.

-s
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I, too, have had surgery to correct external iliac artery endofibrosis, and my experiences were a bit less spectacular than those of Heidi and Little Red. Dr. Jason Lee did my surgery at Stanford in July of 2011. Despite my having the problem in both left and right legs, he only worked on the left leg (the worse one; my post-exercise ABI was down around 0.25, I think). He wanted to see if he could fix the problem in my left leg first, and if successful, he said he'd be willing to operate on my right leg later.

There is no question at all that the surgery improved my circulation. After I recovered, I could run, bike, and swim without the left leg issues that had rendered me incapable of using my left leg properly during any type of moderately intense exercise. Unfortunately, the surgery denevervated several of my abdominal muscles, so I was left with a significant abdominal bulge, and some associated pain related to the bulge. I opted for a second surgery in December of 2012 to correct that bulge (which had not responded to copious core work I tried to alleviate it). Unfortunately, I seem to have re-developed at least some circulatory problems following that second surgery.

I will echo what the others have said. Endofibrosis won't resolve on its own, and, at least in my case, it got progressively worse over the eight years I had it (took me that long to get it diagnosed). There is no question that it was wonderful to finally have circulation again, after years of struggling with circulatory issues while exercising. But, you're right to think twice before opting for the surgery. I'm still glad I had the surgery, because I'd have wondered "what if" if I hadn't. But, n=1, I'm only slightly better off than I was before the surgery, and I've still got a bulging abdomen (though one that bulges far less than it did before the second surgery).

If you decide to go ahead with surgery, take little red's advice and see either Dr. Cherry or Dr. Lee. They have a track record of operating on athletes.
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
I'm in my last year of vascular training and a triathlete.

Just to echo a few points:

Endofibrosis will not resolve with observation.

Surgical revascularization is the best option for symptom relief and continued physical activity.

An angiogram is an important part of the evaluation and to localize the problem.

Regarding abdominal wall denervation, it can be a problem with flank incisions. A midline incision can avoid this complication. This approach has its own issues and may or may not be best depending on the lesion location etc.

If it were me, I would find a good surgeon and have the problem fixed. I could not live being unable to do the things I love most. It really depends on how you gage the risks and benifits. Many athletes have had this problem corrected and return to an improved level of activity.

I hope these comments help. Good luck.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
spessx wrote:
Heidi, Little Red,

What else was involved in your diagnosis other than the ABI? My doctor also wants me to do an angiogram to pinpoint where exactly the blockages are. I'm guessing I should do the follow up visit to confirm the diagnosis.

Also, did you both use Dr. Cherry for the surgery? Dr. Cherry recommended my Surgeon, Phil Church.

My surgery was done by Christian de Virgilio at Harbor-UCLA. I was referred to him by Ken Cherry; Dr. de Virgilio trained under Dr. Cherry at Mayo Clinic. The two consulted extensively about my case since it involved a nearly complete blockage of both my right and left iliac arteries.I have no reservations about recommending Dr. de Virgilio; he is probably the best doctor I've ever seen and one helluva nice guy.

My diagnosis happened a little bit in reverse since the blockage was an incidental discovery during a different surgical procedure. I had a CT angiogram for initial diagnosis, then the ABI.

little red, I was trying to let the OP down easy and gently prepare him for the reality that it won't resolve on its own, but I guess you took that bull by the horns. :) Which is a good thing --- I can't help but think that there must be increased risk of something bad related to limited blood flow in one or both lower extremities. It just can't be good for you...

 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
You will need to have an angiogram. That will pinpoint where the issue is. Dr. Cherry does this with a local and will actually have you mimick the cycling movements during the angiogram so he can see if the inguinal ligament is compressing the artery. It was very clear in mine that the ligament was compressing the artery. If your surgeon was recommended by Dr. Cherry then I would assume he is familiar with this issue in athletes and I would assume he has done this surgery on many athletes. That said, I would still ask your surgeon how frequently he sees athletes with this condition, how frequently he performs this surgery on athletes, etc... Don't be afraid to ask a ton of questions!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
 
So I went in for further diagnosis today. The doctor had me do a CT angiogram to see if they could pinpoint where the issue was occuring. The images were very clear and did not show any obvious issues. The images are being sent off to a radiologist for further review. I'm pretty confused now as I don't understand how I could have a positive ABI and a negative CT Angiogram. Could the ABI have been incorrect? My surgeon came highly recommended by Dr. Cherry and has diagnosed another triathlete with EIAE.

Anyone have any ideas?

-s
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
Yes, it could very well be incorrect. I perform them (as a vascular sonographer) regularly, and would only use them to confirm my ultrasound findings, not as a standalone test.
Too many variables to be always accurate.

I would think it more likely however, that the CT has failed to demonstrate the pathology. Can you get a duplex ultrasound?
 
Re: Illiac Artery Endofibrosis - I've got it. [Mannick] [ In reply to ]
 
Hi Mannick

Thank you for the reply. Out of the two tests, ABI and CT Angiogram, which one would you say is most likely to be correct?

-s
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
thanks for sharing your story, and this post is more of a general question,

but how do people end up with illiac artery endofibrosis? If this is the result of an aggressive riding position, then i'd much rather be as aero as a brick rather than risking developing it. Is there anything a healthy (at least outwardly) person could do to see if there may be a problem that's manifesting?
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I found your story very interesting to read as although I have different issues my results are similar and I am trying to find a fix even though the intervention doctors at UCLA think I am on the mend I am far from being the active athlete I have been for over 30 years.
A quick summery last year I had a massive blood clot and bilateral PE, they installed a IVC filter and removed most of the clot, unfortunately the IVC Filter caused major groin issues so I had to have groin surgery removal of various nerves and repair in femoral channel, anyway 2 weeks later another massive clot formed in my groin and I almost died with this PE thankfully I was saved by paramedics. Anyway I got over that it was then determined that the filter had to come out as it was sticking out of the IVC vein in three places and one was pressing in to my spine causing all sorts of pain, so that was done at UCLA but then the vein collapsed and tore due to the removal with another blood clot and PE my lucky 3rd one. So three more balloon surgeries kept open the IVC vein thankfully. But the MRV I had showed the IVC to be only about 1.5cm in diameter compared to 2.5 cm normal and it showed a large blood clot in my iliac vein which they said could not be removed, so now the vein is open to 1.8cm with the blood clot still in the iliac vein. This along with being so incapacitated for 12 months has really impacted how I can train today. My cycling is a joke as I just donít have any oomph gone from someone who could average 20 mph to now around 15 mph and that feels so difficult, swimming not too bad as I guess gravity is not playing such a part in the blood flow.
So what tests could I ask for to help determine what levels I can expect as I know the cause but I just donít know what the outcome will end up, the doctors have been great at UCLA but they just think because I survived all of this I am lucky not worrying too much about me riding my bike or running etc. But it sounds from what you were saying there are other tests to see what is going on for the physical side of things. The MRV's are good but only for blood flow etc. Cheers Rob
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
Without seeing you, your CT, how the ABI was performed, the state of your peripheral arteries, it is impossible to say.

All I mean to say, is that both have the possibility of being inaccurate for various reasons, and that an ultrasound may settle the difference. Even then, there are possible factors that can make the ultrasound suboptimal also, so I really can't say which is the better test.

In my occupational setting (private radiology practice in Australia) health insurance is less of a issue than it seems to be in the US, so in difficult cases we tend to do all the tests available if necessary, and weigh the results. That's not my call, just how it seems to be.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
In Jan 2012 I had a similar experience when I was fist diagnosed with this. ABI test showed decline in the left leg very slight decline in the right. An ultrasound of the left leg showed nothing . An angiogram with left leg at 90 degrees showed an area where the artery was collapsing. The Dr.'s comment at that time was that it didn't look that bad. It turned out once he had me open on the table in the operating room it was way worse than what he had expected based on the angiogram . The endofibrosis extended down through the external iliac artery in to the femoral artery as well.

I had dealt with symptoms for about 5.5 years before I figured out what the problem was. I had surgery in Mar of 2012 and then again 6 months later in early Sept 2012 . I believe the first surgery was not successful , the second surgery was also unsuccessful. My ABI before the first surgery was 78, after the second surgery it was 58. In Nov of 2012 I spent 4 day in the hospital getting rid of bloods that had formed in the graft and leg . This past week I was back in the hospital for another fun filled 3 days of clot busting and angiograms.

I have signs of endofibrosis in my right iliac artery as well. Based on the ABI tests that I've had done over the last year the right leg is getting worse with rest, not better.

Something to think about....When you had the ABI test done did the Dr come in to see how you're fit on your bike? How aggressive is your fit? Having my leg held at 90 degrees when laying on a table does not simulate what is happening to the artery when I'm riding on my tri bike down in the aero position, riding the bike puts me in a much tighter angle. The difference in the two positions(riding the bike vs laying on the table with the leg at 90 degrees) might be why there doesn't seem to be any "obvious issues" in the angiogram results. I had my Dr come in and take a look at me on my bike during my last ABI test, it was an eye opener for him.

Jill
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Wow, what a great and informative discussion. I see from Heidi, Little Red and others how frequently this goes undiagnosed for years and years. I have been running ultramarathons for 35 years, and marathons even longer. 13 years ago, I discovered that although I was still finishing respectably in 50 mile trail events (a couple sub-9 hour, mostly low to mid 9's), I could no longer run a mile without having to stop and walk for a minute. I went to a cardio guy who used to be a friend, and found out that I had some very minor heart valve leakage. I used that as my excuse for a number of years as my ability to actually run continued to diminish. By 2010, I was hard pressed to run for 2 minutes but could do this repeatedly if I took about a one minute walking break and continued to do 50 milers with my new run/walk style. I was also finding that the more and harder I trained, the worse I ran - I was just sore all the time after a hard workout. I was also experiencing things like foot numbness and sometimes burning nerve pain if I stepped on something slightly wrong on the trail. Revisited my cardio doctor who told me that my problem was that I was old and I should find another sport! (Age 61 at the time). I started another goose chase with a pulmonary specialist after my blood saturation "appeared" to drop to 80% while on the cardio treadmill. I didn't realize how totally unreliable the finger pulse oximeter readings were when bouncing around and nobody in the cardio office bothered to tell me. Spent 6 months in late 2011 and early 2012 doing numerous pulmonary tests and scans to find the nothing that was there.
At my fall 2012 physical, I insisted that my primary care physician order a look at my leg circulation. By this time my run/walk cycle was down to about 50 - 65 strides running, equal walking and I stopped entering races with 12 hour cutoffs. ABI tests showed at rest 1.10 dropping to 0.65 post exercise. I had great difficulty inducing my normal symptoms on a treadmill - extremely different leg motion, extremely different results. Went to a vascular surgeon, who I believe is genuinely trying to help me. Our initial thought was poplitleal artery entrapment syndrome (PAES) because most of the symptoms were in my lower legs. However, CT scan and angiogram ruled that out. At this point, the vascular guy became fixated on compartment syndrome. I was very skeptical - I don't believe my symptoms have anything in common with compartment syndrome! I had my legs stuck with a huge needle attached to a tire gage, and both pre and post exercise DID NOT support compartment syndrome. However, this failed to deter the vascular guy. I did have some stenosis in my popliteal artery (which he did not believe was significant), but we decided to try balloon angioplasty to see if it helped. Marginal at best. So we sat for couple months doing nothing.
My internet searches finally caused me to self-diagnose external iliac endofibrosis. Symptoms are close to 100% match. Discussed with cardio doctor earlier this week who admitted he hadn't looked too hard for that because he associated it with cyclists, not runners. I told him I could point him to a lot of statistics and half a dozen case studies. (BTW, I have bicycled across the country several times and have many years with a lot more miles biked than run.) He agreed to look at my existing imagery to see if there is anything to support my conclusion. Waiting to hear from him.
The personal stories in this thread are priceless! Thank you everybody! It's very clear that most doctors don't know everything and aren't able to find the time to stay current with all the developments and studies in their fields. Nobody cares more about your issues than you. Unless you are very lucky with your specialists, you are very likely going to need to self-diagnose. That is the value of a forum like this. However, I needed other sources to be able to attach a name to my symptoms in order to even find this forum. Heidi's comment about forgetting what it is like to run/walk with normal leg feelings really struck home. I hope my self-diagnosis is confirmed and that I can reattain that magical feeling of normalcy.
 
Re: Illiac Artery Endofibrosis - I've got it. [pmingo] [ In reply to ]
 
Yep, it is becoming more common, or maybe I should say more frequently diagnosed, but it can still take years to get an accurate diagnosis since most of us initially go to an ortho and most ortho don't know about this condition. On the flip side, very few vascular surgeons know about this condition in athletes either. I had problems for so long that I was actually happy to finally get a diagnosis and know something could be done to fix it, even though it was surgery. They initially thought popliteal artery entrapment as well. For years I think the doctor thought I was crazy since my symptoms were different when running versus cycling and when I went for things like ART they couldn't find anything that felt tighter, more knotted up, or anything in the effected leg.

It sounds like you've been talking to a cardiologist but you really need to see a vascular surgeon. You also need to have your ABI (ankle-brachial index) tested. You'll need to find a vascular surgeon that can do the test running on a treadmill, since it sounds like you are primarily a runner. It will be clear from the ABI test if there is a vascular issue and from there you will need to have a angiogram of your iliac and femoral artery since that will pinpoint exactly where the issue is. You will want to be sure your vascular surgeon works with athletes (I highly recommend Dr. Cherry at UVA) since he will have you move your leg in a running/cycling pattern to see if the inguinal ligament is causing compression on the artery, and if so they will release that ligament during surgery as well. Again, I really emphasize seeing a vascular surgeon who is familiar with this condition in athletes and has performed this surgery on athletes. There are not a lot of these around and it is worth the trip to UVA to see the best, or if you are on the west coast the surgeon at Stanford (don't remember his name). Feel free to PM me if you have any questions!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I emailed Dr. Cherry, and he was nice enough to recommend a doctor here in Detroit area, and covered by my insurance (Dr. Shanley at Beaumont). Meanwhile, the vascular Dr. to whom I gave my self-diagnosis of EIE was supposed to look at the existing images and after a week and a half, had his office schedule an appointment for next week. This will be another 3-1/2 weeks since I last spoke with him. No word on what he's seen or not seen - like why would I care????

So at least I have a backup plan if I'm not happy with how the appointment goes next week. If he doesn't see EIE in the images, then I think he's out of ideas anyhow. Even the EIE was my idea, not his, and I'm just a dumb engineer!
 
Re: Illiac Artery Endofibrosis - I've got it. [pmingo] [ In reply to ]
 
pmingo wrote:
I emailed Dr. Cherry, and he was nice enough to recommend a doctor here in Detroit area, and covered by my insurance (Dr. Shanley at Beaumont). Meanwhile, the vascular Dr. to whom I gave my self-diagnosis of EIE was supposed to look at the existing images and after a week and a half, had his office schedule an appointment for next week. This will be another 3-1/2 weeks since I last spoke with him. No word on what he's seen or not seen - like why would I care????

So at least I have a backup plan if I'm not happy with how the appointment goes next week. If he doesn't see EIE in the images, then I think he's out of ideas anyhow. Even the EIE was my idea, not his, and I'm just a dumb engineer!

If your original doc is not familiar with it he won't see it. The only people who can diagnose are the ones who has experience in the condition. Most CV docs are used to looking at diseased arteries and not big fat seemingly healthy ones. The scarring is usually not caught unless it is very severe.



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp March 8-10 A2 Wind Tunnel
 
Re: Illiac Artery Endofibrosis - I've got it. [Ex-cyclist] [ In reply to ]
 
x2 on this point. My first angiogram was read by the top vascular doc at UC Davis Hospital. Great hospital, great reputation, but they told me there was nothing wrong with my iliac or femoral arteries. It was only when I went to Dr. Lee at Stanford (who is used to diagnosing this issue in athletes) that he identified the location of the problems. And then, it was only when he was consulting with some experts in France and showed them my films that they showed him some things he hadn't seen when he had originally reviewed my films. And then, echoing what someone else said, once he had me opened up on the operating table, he found that the problem was even worse than the angiogram had suggested. The angiogram isn't as definitive as we would like it to be. It can help the surgeons identify the area(s) that are likely problematic, but in my experience, it's only when they have you opened up on the table that they can really see what's going on.

In response to the person who asked, "Why do people get this/How can I avoid getting it?" -- as far as I've been able to gather through reading and talking to vascular surgeon types, one has to have a physiological predisposition to it, and then one has to exercise like a fiend for many years. You don't see this problem in 20 year olds. You only see it in endurance athletes who have been endurance athletes for a long time. I developed my symptoms in my early 40s. Other athletes (Belinda Granger, for example) developed the problem in their 30s.

The other frustrating thing is -- sometimes the surgery works, and sometimes it doesn't. Sometimes it works at first, then the problem returns. Sometimes it improves things somewhat, but not all the way. Sometimes the results are phenomenal. There aren't enough of us who have been surgically corrected yet for the docs to have characterized all of the different variations and to know for sure what works best.
 
Re: Illiac Artery Endofibrosis - I've got it. [pmingo] [ In reply to ]
 
You need to have your ABI tested - treadmill or cycling test. That will give you a definitive answer as to if it is a blood flow issue or not. If that test is positive then you need to have an angiogram. My ABI for my affected leg (left leg) was 1.16 at rest and 0.34 after exercise. You will not have any significant drop if there is no artery/blood flow issue, but a significant drop is a clear positive indication it's an artery issue. I'm not sure what images you are referring to that need to be read? But with both the ABI test and angiogram you should have your results immediately. Dr. Cherry showed me where the issue was during the angiogram and even I could see it. It sounds like you REALLY need to get to a vascular surgeon who is familiar with this condition with ATHLETES.
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
Eileen wrote:
x2 on this point. My first angiogram was read by the top vascular doc at UC Davis Hospital. Great hospital, great reputation, but they told me there was nothing wrong with my iliac or femoral arteries. It was only when I went to Dr. Lee at Stanford (who is used to diagnosing this issue in athletes) that he identified the location of the problems. And then, it was only when he was consulting with some experts in France and showed them my films that they showed him some things he hadn't seen when he had originally reviewed my films. And then, echoing what someone else said, once he had me opened up on the operating table, he found that the problem was even worse than the angiogram had suggested. The angiogram isn't as definitive as we would like it to be. It can help the surgeons identify the area(s) that are likely problematic, but in my experience, it's only when they have you opened up on the table that they can really see what's going on.

In response to the person who asked, "Why do people get this/How can I avoid getting it?" -- as far as I've been able to gather through reading and talking to vascular surgeon types, one has to have a physiological predisposition to it, and then one has to exercise like a fiend for many years. You don't see this problem in 20 year olds. You only see it in endurance athletes who have been endurance athletes for a long time. I developed my symptoms in my early 40s. Other athletes (Belinda Granger, for example) developed the problem in their 30s.

The other frustrating thing is -- sometimes the surgery works, and sometimes it doesn't. Sometimes it works at first, then the problem returns. Sometimes it improves things somewhat, but not all the way. Sometimes the results are phenomenal. There aren't enough of us who have been surgically corrected yet for the docs to have characterized all of the different variations and to know for sure what works best.

Yes to all of this.. I'm one of the ones where the surgery improved things, but not all the way back to normal. At this point though, 3 year post-op I've not slid backwards. I met a former pro-cyclocross racer while I there for my consult who actually got worse after surgery. Unfortunately they have no idea how a person is going to react to the surgery and what kind of scarring might occur on the artery after surgery.

I wouldn't say you never see this condition in young people. I know of a few people in their 20's who have contacted me for advice after being diagnosed. But you are correct in saying it usually affects people in the their late 20's, 30's. Chavallier put a general number of kilometers ridden before it shows up, but I can't remember that number off the top of my head.



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp March 8-10 A2 Wind Tunnel
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Hi Red,
I had the ABI tests which did indicate a significant post exercise ABI drop. This replicated in a second test in which some additional measurements were taken. The images I'm referring to are a contrast CT scan and angiogram images. I think it's likely I'll jump to Dr. Cherry's recommended doctor after my appointment.

Eileen,
The number of cycling miles I've seen for the probability of EIE to start its exponential rise is 150,000 km or about 93,000 miles.
There is a case history I've found of a young (18 - 20 year old??) cross country skier with EIE. One of the medical studies I've read was subtitled "An Underdiagnosed Condition". That appears to be an understatement. Part of the problem is that the symptoms start out so nondescript that it makes you wonder if you're just a little more undertrained than you thought, or that getting older is much tougher than it looks. Until my ABI test last year, 12-1/2 years into my search, I got the distinct impression doctors thought I was nuts. Up to then I had no measurable symptoms. When I was still finishing 50 mile runs in respectable times, nobody appeared to even hear that I could not run continuously for 1/4 mile! It seems you have to be unable to walk before anybody believes you have a circulation problem in your legs.

One more anecdotal observation: very few of the ultrarunners I was racing against 35 years ago are still active. Most of the 64 year olds who are running these things started in their late 40's or 50's. There are many reasons people don't hold up running ultras for 40 years, mostly knees, but I'm wondering how many other undiagnosed EIE cases there may be out there.
 
Re: Illiac Artery Endofibrosis - I've got it. [pmingo] [ In reply to ]
 
"What Causes Iliac Arteriopathy in Athletes?
The first research on iliac arteriopathy in elite cyclists came out of France in the 1980s and has been growing steadily ever since. Researchers and surgeons speculate that a combination of factors may cause the external iliac arteries to be damaged, including:
  • An extremely high blood flow
  • Repetitive hip flexion
  • An aerodynamic cycling position

Together these factors result in a continuous, repetitive flexing of the artery while under pressure. This stress, over hundreds of hours of high-intensity training, may cause damage to the various layers of the artery wall, or may cause the artery to be stretched, or kinked. Some surgeons have found a tough fibrous tissue build-up on the inside layer of the damaged artery. This fibrous tissue not only narrows the artery, but also prevents it from dilating during exercise. The result is a decreased blood flow to the legs that is often only noticeable during high intensity exercise."

http://sportsmedicine.about.com/...s/a/Arteriopathy.htm

In my case I think it has more to do with the intensity of the exercise and position than it has to do with the amount of time spent on the bike. The year I had my first symptoms was the year I spent the least amount of time cycling and running.. In 2007 I had hired a coach and started working with a power meter . My workouts consisted of pretty much all short hard intervals on the bike during the week usually no more than 1.5-2 hrs total ride time. On the weekend it would be either more of the same or tempo work inserted within a 3-3:30 ride. That year my position on the bike was the most aggressive it had ever been and I could and would spend all my time riding in aero. Prior to that year the only high intensity work I would do in my training was when I would race in the summer. I do think you're going to hear a lot more about this in the coming years in the triathlon community. Based on what I've learned there is an unseen cost to doing short hard intervals all the time as the majority of your training . If you are doing this type of training I wouldn't do it in aero position.

I contacted Dr Cherry a couple weeks ago after my surgeon told me that I shouldn't expect to train or race anymore, He also told me I should expect to stay on warfarin for the rest of my life because of the blood clots I've been having since surgery. I sent Dr Cherry an e-mail and overnighted all my films and records to him. the next day he called me. He said there are no guarantees but he believes he can help, he can see something in the films that my surgeon doesn't se, I will be seeing him in a couple weeks. I would recommend you get several opinions from different surgeons once you've been diagnosed.

Jill
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I am curious what level you have reached in bike racing, how long it took you to get there, and how much you feel the condition held you back during races and training?

There are several pro racers who have had the surgery after racing in the peleton for 5-10+ years, so obviously there are many different levels of severity.

-Physiojoe

-Physiojoe
Instagram: @thephysiojoe
Cycling coach, Elite racer on Wooster Bikewerks p/b Wootown Bagels
 
Re: Illiac Artery Endofibrosis - I've got it. [Fry] [ In reply to ]
 
I was expecting my surgeon to find a fibrous tissue build-up on the inside layer of the damaged artery, as you described in your post. My surgeon found damage visible on the outside of the artery. It had been beaten up for so long, that the whole artery (outside and inside) was thrashed. I've seen the photos from the surgery -- gross and fascinating at the same time -- and sure enough, even to the untrained eye, it's easy to see that the outside of the damaged part of the artery looked different relative to the healthy sections of artery above and below the damaged section.

Some athletes don't actually have damaged arteries; it's just that their arteries kink and get compressed during exercise in certain positions. Some of us have both damaged arteries and kinks. (Just lucky that way). And, in some of us, the problem is noticeable even during low-intensity exercise. It's all over the map.

I think you're absolutely right about getting multiple opinions. I wish I had known about other surgeons doing this type of surgery when I saw Dr. Lee. So little is known about this problem that the more surgical minds you seek out on this, the better.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I had my long awaited Dr.'s appointment today, looked at the images. There are some signs of possible crimping in the iliac, but he wasn't sure they were definitive. He has worked with Dr. Cherry before, and offered to Fedex the CT scan and angiogram images off to him, an offer I jumped at. So the disk is in the mail, and as everybody here has pointed out, Dr. Cherry is the definitive diagnostician.
 
Re: Illiac Artery Endofibrosis - I've got it. [pmingo] [ In reply to ]
 
Thanks for your comments everyone. I was diagnosed with EIAE in August this year. I have consulted surgeons here in Australia who have provided the risk and benefits of surgery. I am a keen recreational cyclist and had been riding 5 times a week with a group( 250Km/week + ) but now down to once a week ( solo ) because of the ongoing pain in my legs. My ABI's as tested are 0.35 left and 0.38 right. It takes around 10 minutes post exercise for the ABI's to even. I have not had a angiogram as yet. I am in the process of determining will I or wont I have the surgery. The vascular surgeon who I have seen is very capable and has experience with this surgery for cyclists. My dilemma is that I am 52 years of age, consider myself very fit and strong for my age but wonder how many years of cycling I may have in front of me.
The decision is difficult and is always on my mind.
Cheers K.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
kenpet wrote:
My dilemma is that I am 52 years of age, consider myself very fit and strong for my age but wonder how many years of cycling I may have in front of me. The decision is difficult and is always on my mind.
Cheers K.
Undoubtedly a very difficult decision, as it is a surgery with significant risks. I was a year older than you when I had my surgery--my ABIs were about .3 in both legs and I ended up with bypass grafts in both legs. Like I said earlier in this thread, the surgery changed my life. Yes, I'm riding my bike (rather incessantly) and running a little, but I'm also walking without pain for the first time in 25 years. I'm 55 now and feel like I'm doing pretty well for an old lady. :) I don't know how many years of riding I have left, but I'm hoping for at least another 20. The best thing is that it's given my husband and I the ability to share the things we love to do together (riding, hiking, even walking the dogs) but really couldn't before the surgery.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Thats is a very good point Heidi. My wife is also a keen cyclist and we had hoped to do some overseas cycyling trips.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
A couple of Questions please Heidi.
Did they use a vein from your ankle for the patch to your arteries. Any ongoing soreness from this vein harvest area.
Were you on any medication directly after the surgery. Are you still on medication.
How long after surgery could you walk and then ride.
What is the format for recovery ie exercise/strengthening
Is there anything about the surgery ie before an after that you would do differently.

Much appreciate your help.
Thanks Ken
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
I had my surgery at the age of 49. Just couldn't envision spending the next 30-35 years of my life wondering what life would have been like if I'd gotten the problem fixed. I knew what it was like pre-surgery, and it was pretty miserable; I couldn't do any of the activities I loved to do at the levels I wanted. The "what if" would have driven me insane, so I opted to try it, knowing full well that I could end up worse off than I was pre-surgery. I just had to try.

I was given two choices for an arterial patch -- harvest a vein from my thigh or use a Teflon graft. I opted for the Teflon graft, because they needed so much vein for my surgery that they would have had to slit my leg open from crotch to knee (or close to that) to get enough, and I didn't want to risk the consequences of such a long incision. Even though I've had post-surgery complications, and the surgery didn't return me to my abilities before the endofibrosis symptoms became problematic, I'm glad I had it done. I am able to do a lot more now, with far fewer leg troubles, than I was before surgery.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
No vein harvest for me either. I have a DVT history, so no messing with my veins, plus the damage was too severe to patch. I had a complete bypass with a Dacron graft on both iliac arteries.

I have some genetic clotting issues, so post-surgery I was on an injectable anticoagulant (Arixtra) for 2 weeks. I believe it's common to use that for a few days post-surgery, but I don't know for sure. In my case, though, we had to go longer to reduce the clotting risk. My doctor also had me take zinc post-surgery for a few weeks. I don't remember the rationale for that. Other than that, no prescription meds; maybe some pain meds I didn't take. I continue to take daily low-dose aspirin, but that's for my clotting issues and is unrelated to the surgery.

I was up walking within a day or two post-surgery (I don't remember exactly). Since I had both arteries replaced, they did a midline incision, navel to groin. I'm not sure how recovery from that varies from recovery from the more common transverse incision that is used for a one-side only repair/bypass. The doctor let me start walking more seriously within a few days of the surgery. Like I said in my earlier post, the first time I went outside to walk I could feel the positive change in my legs within 2-3 steps. I had completely lost sight of what normal leg function felt like--and it felt good! The doctor allowed me to walk up to about 30 minutes per day with a week or so. I think I did a two-ish mile walk on trails within 3 weeks of the surgery. That was an error in judgment, but fortunately not a tragic one. Definitely too soon and increased my abdominal pain a little bit. No cycling for 6 weeks, then only on the trainer for a couple more weeks. I was back on the road in 8 weeks; 100 mile ride 6 months after surgery. I was pretty good about following my doctor's instructions since the consequences can be pretty severe.

I really can't think of anything I would do differently about the surgery. I wish the problem would have been discovered about 24 years earlier, but that's water under the bridge at this point.
Hope that helps!
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Much appreciate your comments Heidi and you too Eileen.
A lot to think about. Will let you know of my decision.
regards Ken
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Little Red,

I hope you are still out there. I desperately need help locating a surgeon who can perform an external iliac arteriopathy. I have suffered with this for over 10 years. I went to doctor after doctor with no luck. My story is almost identical to yours. I had run for years with no problems. I have run over 60 marathons placing first in most of them. Ten years ago my left quad started cramping and going dead on me in races. Then it progressed into my training pace and now I can only run about a 10:30 or slower pace. I am suffering. I still run but my leg cramps or aches most of the time. I can't race anymore. My CT scan has shown a narrowing of the iliac artery in my left side. I am having the ABI with exercise Monday to confirm the diagnosis. The only problem is that my surgeon has never done this surgery before. I have e-mailed Dr. Cherry twice but I have not received a reply. I emailed Jason Lee and he responded by telling me I could fly to California and he would work with me. I would prefer to go to Virginia. I was wondering how you got Dr. Cherry to answer your e-mails. OR do you know of any other vascular surgeons in Texas that now perform this surgery. Also, were you able to fly to Virginia and have the surgery right away. How long before you were able to fly home. This is very important to me. I would love to be able to run pain free again. Although I am older I still have dreams of competing and setting records at my age. I think I still can, if I can just get this fixed. I am giddy with hope. I want this so badly. I know you and others on this forum will understand. I need help finding an experienced surgeon.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Hello! Maybe I got lucky when I emailed Dr. Cherry, but he responded the same day. This is the email address that I have for him: kjc5kh@virginia.edu and the phone number to his office is: 434-243-7052. If you aren't getting a response by email it might be best to try calling his office. I drove to UVA to have the surgery. I spoke to Dr. Cherry's office and I scheduled by appointment immediately after IM Louisville. I drove straight from Louisville Tuesday after the race, saw Dr. Cherry Wednesday morning. He did an angiogram, I was admitted that day and had the surgery the following day on Thursday. I didn't need to do an ABI test again since I had already had one in Atlanta prior to Louisville. He scheduled my consultation for Wednesday so I could be put on his surgery schedule for Thursday if needed. If I remember correctly I was discharged Saturday afternoon and drove back to Atlanta Sunday, or more accurately my husband drove me Sunday. I'm not sure how soon post-surgery you can fly. I would recommend calling his office. I don't know of a vascular surgeon who specializes in this in athletes in Texas, but it's possible he may be able to recommend someone. I had some muscle imbalances that I had to correct post surgery, but I had this done in 2009 and I've gone on and done 5 Ironmans since then and just had a 20 minute Ironman PR last month. I've had zero issues since the surgery. However, it did take a couple years of strengthening to fix some imbalances that were the result of the endofibrosis. Feel free to PM me if you have any other questions!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Thank you so much for your fast reply. I was glad to hear you drove and didn't fly. It will be a two day trip for me but I would much better drive. You answered my questions. I needed to know how long I would be there etc. Who did any follow up appointments you needed?

I will try to e-mail him again. I believe the e-mail you gave me is the one I used. If I don't get a response I will call.

I know you are so happy. I hope that I can experience the same joy you did at getting this repaired. I can't believe I had to suffer for over 10 years. The first entry I found in my log books was in 2000. From there it got worse and more entries appeared. Who would have ever thought that running could injure one of my arteries.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I did a follow up around 3 months, if I remember correctly, to have my ABI rechecked post-surgery. I also went back at one year to have it checked again. He might be able to help you find a local vascular lab to do the follow up testing if there is one near you that has a proper treadmill or bike set up (not all labs do since most vascular patients need very little activity to affect their ABI). At my one year follow up I also spent half a day in the Speed Clinical biomechanics lab at UVA to have a gait analysis. That was back with Jay Dicharry was still there and it made the trip even more worth it.

I would definitely try to call, especially if you can't get through by email. They were very accommodating when I contacted them and were able to get me in very quickly.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
This is all so unbelieveable to me. To finally know that something really is wrong with my leg. No one believed me for years. Everyone just thought I was over the hill and making up excuses. I will be in touch. Thanks so much for your responses. I hope that if there is anyone else out there suffering, they will find this forum and not have to look for over 10 years as I had to. I don't know if the lab I will be using will do the test right. I hope so. I am going to make them run me because walking will not work.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I'm a vascular ultrasound tech in Richmond, VA. We have some of the best vascular surgeons on the east coast and one of them is a die hard cyclist/duathlete/triathlete. Pm me if you want info.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
And I just realized you're not actually from VA. I'm still happy to help if I can though. :) Best of luck!
 
Re: Illiac Artery Endofibrosis - I've got it. [Treegirl85] [ In reply to ]
 
Thanks for jumping in to help. I appreciate it so much. Hopefully I will be able to do what ever it takes to have this repaired. I just want to run again.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I emailed Dr. Cherry to ask about surgeons in the Los Angeles area and he was able to refer me to an awesome surgeon. If you're able to get in touch with him, he can tell you if he knows anyone in your area. Let me reiterate what I said earlier in this thread--DO NOT see a vascular surgeon who is unfamiliar with iliac artery endofibrosis. She/he will treat it like peripheral artery disease and it's not the same.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Heidi,

That is exactly the way I feel. If I can just get Dr. Cherry to e-mail me back. Hopefully he is on vacation or something and will get back to me when he gets the e-mails. I had some good news today and that is my insurance may possibly pay travel expenses. My referral would have to go through a review. I feel like this surgery is a necessity. I don't know what I am continuing to do to this artery because I continue to run. I just hope the review board would agree with my doctors. I can't believe that any insurance company would deny me coverage because without this surgery I am doomed to a life of inactivity. I can't do anything with my legs that I don't have pain. Hopefully Dr Cherry or Dr Lee will take my insurance.
 
Re: Iliac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
My guess is that your insurance company couldn't care less if you're doomed to a life of inactivity. I would focus on the long-term implications of limited blood flow in your legs. We know what those are from years of research with diabetics. Your issues have a different etiology and need a surgeon whose familiar with their treatment, blah, blah, blah. Likely would be a more convincing argument. It would be awesome if they covered travel expenses!
Last edited by: HeidiC: Dec 14, 14 21:40
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Dr Cerry is the BEST in the country........I got a Patch a few years back. extended my cycling career when I thought it was done-ski.

Flew out from CO to have it done.....PM me if you have any questions.
 
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
 
My hopes are so high. Thanks for all the advice and support. I also can't believe that clearing a blockage from any artery is not a necessity. About the same time as the cramping in my in left leg started, I had to go on BP medicine. I can't help believing the two are not related. Also if the blood is not going into my leg when it needs to, is it backing up during my running and causing pressure on the arteries above it? These are things I just wonder about.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I just met with my surgeon today. I am so thrilled that I found him. He has never done this surgery before although he has 27 years experience. However he called Dr. Cherry and talked to him extensively about the surgery and what to expect. I have talked with my surgeon on the phone several times. He is so personable and wants to do what is best for me. My ABI in the left leg was .7 after exercise but had been 1.02 at rest. My CT scan showed a narrowing of the external iliac artery. Also, Dr Cherry and my doctor both agree that my problem is probably because my exteral iliac artery is a lot longer than most people. I hope to schedule my surgery in the next few weeks. The sooner the better.

I was getting back to you again because my doctor says I will be pretty sore. He is using a mid line incision which means I will be very sore. I believe that is what you had also. Do you remember how long you were really sore. I'm wanting to travel (by car) about 4 weeks out and I was wondering if you thought I would be okay to do that. My doctor feels I may not want to do that yet. It will be a 9 hour drive. Also, how long were you off from work. My doctor says 6 - 8 weeks. Just wondering. He is going to be very conservative about letting me run. Probably 2 months before I can run but he did say I could walk. Hoping to be ready for racing next spring!
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
jflorance wrote:
I just met with my surgeon today. I am so thrilled that I found him. He has never done this surgery before although he has 27 years experience. However he called Dr. Cherry and talked to him extensively about the surgery and what to expect. I have talked with my surgeon on the phone several times. He is so personable and wants to do what is best for me. My ABI in the left leg was .7 after exercise but had been 1.02 at rest. My CT scan showed a narrowing of the external iliac artery. Also, Dr Cherry and my doctor both agree that my problem is probably because my exteral iliac artery is a lot longer than most people. I hope to schedule my surgery in the next few weeks. The sooner the better.

I was getting back to you again because my doctor says I will be pretty sore. He is using a mid line incision which means I will be very sore. I believe that is what you had also. Do you remember how long you were really sore. I'm wanting to travel (by car) about 4 weeks out and I was wondering if you thought I would be okay to do that. My doctor feels I may not want to do that yet. It will be a 9 hour drive. Also, how long were you off from work. My doctor says 6 - 8 weeks. Just wondering. He is going to be very conservative about letting me run. Probably 2 months before I can run but he did say I could walk. Hoping to be ready for racing next spring!

I'm suprised that they would do the surgery with an ABI of .7. I've had the surgery done twice. My ABI was .35 in the left leg and .78 in the right. The norm is around .7-.85. What was the ABI in the non-affected leg? If the EIA is long it will likely get worse, so maybe that's the reason for the surgery.

At any rate you should be fine in four weeks. Hopefully your doc will do a muscle splitting incision (not sure if that's the right term) that really improves recovery. Most surgeons will just cut straight through all the muscle fibers in one line. This makes recovery much longer.



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp March 8-10 A2 Wind Tunnel
 
Re: Illiac Artery Endofibrosis - I've got it. [Ex-cyclist] [ In reply to ]
 
I think my ABI was probably lower so does my doctor. It took a minute to get me hooked up again to measure the pressures.

My right leg stayed at 1.0.

Thanks so much for responding. I will let you know how things are going when I'm out running on the roads. Good luck in all your endeavors.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I'm surprised they're doing a midline incision. I had a midline because I had both my right and left arteries bypassed, but I remember the doctor originally wanted to do it as two separate surgeries because of the extra risk associated with a midline incision. But, other than that, I have no idea. I was off work for 6 weeks. I think I was really sore from the incision for a couple weeks. I was pretty tired the whole time I was off work, though. If you're driving alone, that might be an issue. Also, my doctor had me on a strict "no sitting for longer than an hour" plan for a couple of months.

Definitely be conservative with running. Give it a chance to heal. You don't want to add extra trauma and the potential for scar tissue development that will undo the positive effects of the surgery. You really don't want to screw this up.

Last edited by: HeidiC: Oct 17, 14 13:29
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
I've read all of this and it managed to scare the hell out of me. I've been having issues with my lower legs. They feel like they are wrapped in duct tape. Very tight. And my calves and feet are always cramping. My cycling isn't awful, just very bad. ;) I guess getting an ABI would be the place to start?

-Robert

"How wonderful it is that nobody need wait a single moment before starting to improve the world." ~Anne Frank
 
Re: Illiac Artery Endofibrosis - I've got it. [Robert] [ In reply to ]
 
Yes, ABI is the place to start. But you have to find some place that will do it using real exercise, preferably your own bike on a trainer. Most places do the exercise portion of the ABI using toe raises (hold onto the wall, go up on your toes, back down, for a couple of minutes). That won't show anything for us athletic types. I did mine running on a treadmill, but bike is better because you'll be in the problematic position.
 
Re: Illiac Artery Endofibrosis - I've got it. [Ex-cyclist] [ In reply to ]
 
I'm suprised that they would do the surgery with an ABI of .7. I've had the surgery done twice. My ABI was .35 in the left leg and .78 in the right. The norm is around .7-.85. What was the ABI in the non-affected leg? If the EIA is long it will likely get worse, so maybe that's the reason for the surgery.


The norm at rest is >0.96. The norm post exercise should be the same or higher than pre exercise pressures.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
My doctor was going to do the flank incision but after talking to Dr Cherry he is doing the midline. I think it has something to do with the location of my iliac artery. Mine branches higher up in my abdomen. Also if you read higher up in this forum there was another surgeon that recommended the midline.

I wanted to do the surgery yesterday but I may have to wait several weeks. I really need to travel at Thanksgiving and my doctor is recommending I don't if I have the surgery. I would definitely be sitting for too long a time. I may have to put this surgery off until December 2nd and I really don't want to. I just want to run again pain free. Right now I run but I run really slow and sometimes that is even hard. I have good and bad days. For some reason being really hydrated helps. Maybe that helps the blood to flow better. I don't know.

Thanks for your input.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Dr. Cherry also convinced my surgeon, who interned under him at Mayo Clinic, to go with midline instead of two separate surgeries. So hooray for Dr. Cherry. :) He's probably seen it all.

It's hard but don't rush into the surgery if you're not going to have the time (and willpower) to let yourself heal. It's worth waiting -- I know people who went back to activity too quickly and the surgery ended up being unsuccessful. Impossible to know if that was the cause, but I doubt it's an experiment you'd like to try. Good luck with whatever you do. Let us know how it goes. I know it's given me my life back, and that's a pretty awesome feeling.

 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Thanks Heidi. That's exactly what I am having trouble waiting on. I want my life...my life of running back. I will probably wait. Right now it seems like the best option.
 
Re: Illiac Artery Endofibrosis - I've got it. [Treegirl85] [ In reply to ]
 
Treegirl85 wrote:
I'm suprised that they would do the surgery with an ABI of .7. I've had the surgery done twice. My ABI was .35 in the left leg and .78 in the right. The norm is around .7-.85. What was the ABI in the non-affected leg? If the EIA is long it will likely get worse, so maybe that's the reason for the surgery.


The norm at rest is >0.96. The norm post exercise should be the same or higher than pre exercise pressures.

No that is incorrect. The ABI falls under maximum effort. There is so much vascularity in the lower extremities, especially in elite athletes, compared to what is in your arms that the pressure is always going to be higher at the brachial. Chevalier, who was one of the first to recognize this issue, set the mark at .8-.85 after a maximum effort. Later research, and a lot more cases, have suggested revising this downward to .7-.85. Ultimately it comes down to whether the person is symptomatic as to whether intervention is suggested.



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp March 8-10 A2 Wind Tunnel
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I literally cried the first time I ran and cycled post surgery with no pain or feeling like I had a blood pressure cuff squeezing my leg. Good luck with the surgery! I hope it is successful for you as well! Stay positive and take your recovery seriously!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Has anyone in Canada experienced this and if so would you recommend your vascular surgeon? Any Dr.'s out there who can help direct me to a vascular surgeon in Canada, more specifically in Toronto, with experience/knowledge in this area of practise.
 
Re: Illiac Artery Endofibrosis - I've got it. [70.34me] [ In reply to ]
 
Kyle Jones had his surgery done in Vancouver. You could try emailing his surgeon to see if he knows of anyone in Toronto. http://kylejones.ca/2010/11/25/surgery/

 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Thanks Heidi - much appreciated.
 
Re: Illiac Artery Endofibrosis - I've got it. [70.34me] [ In reply to ]
 
I tried to pursue it with the head of vascular surgery at UofT/ Sunnybrook - Dr Maggisano- and although he went through the range of tests with me, he flat out refused to - in his words - cut me open to improve my triathlon outcomes.

Not exactly helpful in identifying a lead in Toronto, but it narrows it by one!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I had my surgery last Tuesday and it has been pretty rough. Still I have no regrets. I have four beautiful battle scars that I will be proud to display. The ones on my leg will show in my running shorts but I don't really care. I have not been in a lot of pain but the main problem has been gastro. My stomach has bothered me a lot. Probably the pain medicine. I won't be able to run for a couple months but I can walk as soon as I feel strong enough. My hemoglobin dropped a good bit because of the surgery so I am struggling with that. I don't know if it's my imagination or what, but I swear that my left leg feels stronger already. It's like it has been feeling in it. When my doctor opened my external iliac artery it was completely occluded! He removed over 2 inches of blockage. I can't wait until I can run again. I look forward to running without pain. When I googled this condition a few days again the web is loaded with articles. Just 2 months ago there was hardly anything. I hope now that no athlete has to suffer like I did....not knowing what was going on and have their athlete career ended.
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
The first week or 2 post-surgery are the roughest. I felt completely fine when I was laying down but would get sore if I walked around too much. And yes, the pain meds can mess up your stomach. I only took the pain meds for a couple days for that reason. Considering what the surgery involved the recovery is fairly quick. The scars will fade a lot after a couple years. Mine were really obvious for the first couple years but now you can hardly see them. I think you will be very glad to have gone through this when you get back to running and cycling and discover what it feels like to run and ride with 2 legs again. :) Good luck with your recovery. Be patient ... you'll be back out there training and racing soon enough!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Thanks! I look forward to what I hope will be a speedy recovery!
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Congrats on having the surgery. Like litte red said, the first couple of weeks are the roughest. As for your leg already feeling stronger, my husband said that in the recovery room you could literally see my toes go from white to red as the blood starting circulating down there for the first time in many years, so I would say it's entirely likely that it is stronger already. Blood flow is a miraculous thing. :) The first time I walked outside of the hospital, I could tell within 3 steps that things had really changed for the better. I hope you have the same experience. But let me reiterate the need to be patient in returning to exercise -- you don't want to mess this up.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
What are the signs and symptoms of this condition? Unexplained knee pain? Any hip problems?
 
Re: Illiac Artery Endofibrosis - I've got it. [titemple652] [ In reply to ]
 
Google external iliac artery endofibrosis on the web and you will find tons of stuff For me the problem was only in my left leg and I noticed it over 10 years ago in a 5K race. The condition is most common in cyclists but I am strictly a runner. My leg would just go dead on me. I could still run but the cramping would at times become unbearable and I would have to stop and walk. I slowed my pace and stopped racing. I could never find out what was wrong and doctor after doctor didn't know either.Eventually I went to about an 11:00 per mile pace. This was really extreme for someone who regularly averaged 7 - 7:30 on training runs. I have read cyclists refer to it as a "loss of power". Check out the web and if you are suspicious have an ABI test done, but measure pressures before and after exercise not just at rest. Good luck and I hope this is not what if wrong.
 
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
 
Can you PM me...I couldn't PM you for some reason. I have surgery scheduled with Dr Cherry on Jan 12th and I am also flying there (from Austin TX) and would like to hear from you about your experience...and specifically how long until you could fly home. Thanks in advance. -pj
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
I have surgery scheduled for Jan 12th with Dr Cherry in Virginia on my Common Iliac artery. Would you PM me? I have a few questions for you. Thanks. I would have PM'd you but since i just joined I am apparently on probation and not allowed. Thanks in advance. -pj
 
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
 
I don't know what pm means. I would love to talk to u. My email is jflorance2@yahoo.com. Send me an email. I will then send u my phone #if u would like to talk.
In Reply To:
 
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
 
Thanks. Emailed you.
 
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
 
PM sent, good luck you picked the right Doc..... flew the day after each time. Won one of the toughest climbing stages at the Tour of the Gila a year post surgery :)
 
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
 
Thanks. I got your PM but it appears that I am still on probation with slowtwitch, and not allowed to send/reply to private messages. Did you really fly home 2 days post-op?
 
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
 
Yes, in and out....just give yourself lots of time, walk slow and think about how nice it's going to be riding without numb legs :)
 
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
 
I had Iliac artery endofibrosis and I am a runner. I did bike but not competitive. I had the surgery may 2014. I was wondering how you were doing. I still have some symptoms on and off.
 
Re: Illiac Artery Endofibrosis - I've got it. [tammy] [ In reply to ]
 
Hello All

Its kenpet again from 2013. For those who have had surgery could you please advise if you consider it was the right decision. What problems do you have post operation....if any.

Thanks ( still considering the surgery )
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Right was the right decision, wouldn't change a thing other then having it sooner.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
I had the surgery in May and flew by myself to have Dr. Cherry in VA do the surgery. I feel he is the best and I made the right decision. I am now running competitive again. As soon as I found out I had the surgery. I am 43 years old and so happy now that I am able to compete again. If you would like to talk to me over the phone email me and I will send you my phone # tammyclifka@sbcglobal.net

Tammy
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
I can't believe it's taken me so long to stumble onto this topic within this forum. I've lived with Endofibrosis of the left external illiac artery for 3 years after suffering symptoms for around 7 years while competing in running and triathlon events, including 3 ironman races.

My symptoms started in my mid 20s when I was training for triathlons. Some thing was 'off' in my left leg, I could never push as hard, muscle fatigue would set in before I could reach sub maximal HR...I settled in to being a back of the pack plodder who always had a 'funny left leg' which sports docs put down to biomechanical imbalances, resulting in tens and thousands of $ in physio bills and endless frustration.

Mostly my running was what suffered, which I now know as calf claudication...and in the last few years of my running life I amended my runs to doing 5mins shuffle, 1min walks. I even complete my 3 marathons during my Ironmans in this manner. Being stubborn as hell...I never gave up.

I gave up triathlon in 2005 but continued to train as exercise is what keeps me happy. I still continued to see various health professionals, none even thought to test my blood vessels, after all I was young, female and fit and healthy....not arterial disease risk.

In early 2012 I went for a ski trip and on my return did a mountain bike ride. Straight after the ride something was not right, I couldn't walk at all. My left leg just dragged behind me.
Investigations begun and initial Doppler ultrasounds in Perth Australia showed no issues. It took a specialist sonographer within a private vascular surgeons clinic to find it...and when he did he almost fell over as he saw that my collateral vessels (other smaller arteries) around the external illiac, had grown so massive that he could barely recognise them. So my stubborn overtraining behaviour had saved my leg....because I kept exercising through pain...the collaterals meant the leg was getting enough blood to be 'healthy'...as long as I was willing never to run again....
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
My story continued...

Diagnosed finally at age 33, surgery was explained to me, that they would need to do a full bypass ....if I wanted....using my own vein....but apon measuring my vein diameters, they are too small.
Surgeons advise ' get used to a sedentary lifestyle' cause we are not going to risk a synthetic vessel in someone so young etc etc...similar to some of your experiences...the issue may come back, you might die on the table....example of the cyclist who died and all that...

So they said come back in 6 months after you have tried to live with it.

The reason they say that is because collateral vessels need time to develop, and they will with patience, meaning your daily pain levels will improve and you will also develop new patterns of movement.

So....I taught myself to walk again, swim again (at first with legs tied together), eventually gently spin on the bike.

3 years on I'm able to do hiking with nordic poles, ride my bike (but not hard and not up big hills), swim, do gym work, some yoga, I can still snow ski (muscle pain still comes on early).... But there is not enough blood flow to enable running. I miss running like a cut off limb...I really do. I still feel like crying when people pass me running. Something taken for granted...

The daily pain gets me down....walking up the road, cramping, pain, slowness, not being able to keep up with others . And what about the mental health issues...feeling like an incomplete person, living with daily pain and disability. From the outset people see me as a healthy fit person, I'm even studying to be a fitness instructor so I can share my story with others, esp allied health professionals.

I've felt so alone....being told to 'live with it' but not finding any real information about other people with the same problem. It's such a relief to finally know I'm not alone. Your stories have given me hope

I know I'm 1.5 years late...but thank you
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
I COMPLETELY understand where you're coming from. But, honestly, if you're really miserable after trying to give it a go "as is," I think you should seek a surgeon who will operate using an artificial graft. I had my surgery in my late 40s, so, granted, older than you, but I'm still fully expecting to have to have the artificial patch replaced at some point. But I have my life back. No, I'm not 100%, but reading your posts brought me instantly back to the way I used to feel -- so completely frustrated and helpless to do anything to fix the problem/wanting desperately to exercise but unable to without that crippling tightness. Plenty of us on the forum who have had the surgery have had artificial patches rather than our own veins. Yes, there are risks, and no, the surgery might not work, but it sounds like you're being told, "live with it/you have no options," when, in fact, you do have options; just not from the surgeon with whom you initially spoke.
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
I agree with Eileen. You need to try to find a surgeon who really understands this condition with cyclists and athletes. The majority of vascular surgeons are clueless about this condition in athletes. I would've sought out a second opinion immediately after any doctor advised me to get used to a sedentary lifestyle. If it were me, I would do the bypass with an artificial graft. My surgeon used artificial grafts on my iliac and femoral artery and I've been back running, cycling, and racing a lot (including 5 ironmans) since my surgery. Yes, a South African cyclist died after this surgery. It was suspected that he did too much activity too soon after the surgery and developed internal bleeding. Of course this can be a risk, but there are risks with any surgery. This is not a surgery to mess around with during the recovery period or try to rush things after surgery. You need to rest to give the fully give the graft time to heal so you don't have any tears. I personally know 5 people who have had surgery (including myself) and all are alive and well. :) I would not accept "living with it". Seek out another surgeon... travel to a surgeon if you have to. I had to drive 9 hours to see a surgeon who specialized in this in cyclists and it was worth it!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Thanks for the speedy and supportive replies!

I did forget to say I was referred from the 'nervous surgeon' to a colleague of his who had had more experience in this kind of surgery and could paint me a full picture of what would happen on the table and step by step options depending on what they found. The issue with this new guy was that he was completely the opposite personality and kept saying 'whatever you like I will do it for you'. That doesn't work for me either ...they are the experts ...whatever I like doesn't fill me with confidence.

I'm due to go back this year (unfortunately lack of $ is holding me back from too many consults) to get more information and also medical clearance to do some jobs (I'm seeking a new career). When I see the surgeon I'll ask to be referred to someone who can give me real life patient examples...

My other concern with this kind of surgery is the 'other' effects of major surgery on the body. I have a friend who has had multiple various surgeries and complains of chronic pain, nerve pain, tissues not fusing properly and various other things that affect her quality of life so much that she wishes she'd never gone there.

How did you find the healing of the abdominal muscles? Any remaining weakness or issues? The idea of such major surgery petrifies me, plus the recovery (I'm very bad at not resting). Just afraid if doing more harm than good....as I am kind of 'ok' compared to the society we live in that doesn't understand why people want to do endurance sport ;)

Cheers guys.
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
Ok now I feel like a 'goose' as I've found the more recent pages on this topic (I only read 2013 a few days ago). I'm still so amazed how many of you have experienced this, are living this and have had lives turned around by the surgery.

2 questions I haven't seen covered:

1- for those with a synthetic vessel bypass, do you need to take anti rejection drugs for life?
2- anyone know any surgeons in Australia who work like Dr Cherry?
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
I have a synthetic graft and no anti-rejection medication is needed. Unfortunately, I only know of doctors in the US who work with athletes with this condition, but I'll bet if you really look into the cycling community in Australia you could find of some doctors. This isn't as uncommon as people think among cyclists. If I remember correctly, Stuart O'Grady had surgery for this during his pro years but I don't know where he had his surgery.
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
The healing was not that bad. Yes, I couldn't use my abdominal muscles at first since they had to move them during surgery to get to the artery. But gradually over time that subsided, and was definitely not a long term issue. If I remember correctly I was back running and cycling within about 6 weeks and in the pool as soon as the incision healed.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Impressive....you certainly give me hope that this is not the end.

Who knows, I may become a 'born again' runner in my 40's. Look out world, what can I accomplish with 2 good legs :)

I'll certainly be making a very long questions list for the review I'm planning with my diagnosing surgeon.

Thank you so much for sharing your experience with me.

Mel.
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
Good luck and stay persistent!!!!
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
My collateral vessels had 25+ years to develop to compensate for my blocked iliac arteries -- and develop they did. I have an amazing array of collateral arterial growth. But even with that, it wasn't sufficient to adequately carry blood to my legs. My daily pain levels definitely got worse as the years went on; eventually it go so bad that I could barely walk. You can let your doctor know that collateral growth is not an adequate solution. Really, though, you need to see someone who specializes in this type of condition. I'm reasonably sure I have a presentation at home by an Australian surgeon who specializes in iliac artery endofibrosis. I'm at work right now and won't be home for another 11 hours or so, but I'll try to find it when I get home and post his name. Australian pro triathlete Belinda Granger had this surgery; I believe in Australia.

I had two synthetic (Dacron) grafts, one for each leg. No anti-rejection drugs ever. Any kind of surgery is a blow to your system, but the recovery was not as bad as one would think. Even with having my abdominals split open for the surgery, I was walking the dogs within a couple of weeks and riding on the road within a couple of months.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Thanks HeidiC. That article or link to it would be great. I think I went into my shell this last few years after they seriously 'scared me into submission'. Not once did I meet a doctor who was vaguely supportive and said 'I would like to try and help you'. The most positive I had was 'ill do it if you want me to but these are the risks and I won't know what I have til I open you up'.

I'm basically 'sht scared' to do anything. I've had other health issues in life and don't want to add to the problem. Yes lacking confidence big time. But the flip side is that being active makes me happy so isn't that most important?

Thanks again.

Mel
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
"The majority of vascular surgeons are clueless about this condition in athletes"


I call Dr Cherry and get a referral.....Start there! Don't spin your wheels.......
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
Agreed, you should probably shoot an email to Dr. Cherry, as he likely knows the Australian vascular surgeons who are doing this surgery. I couldn't find the article I was looking for; I'll look further this weekend. I did find this one by a vascular surgeon in Sydney: http://journals.lww.com/...ndofibrosis.143.aspx.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
I've also just stumbled on this (it's very hard to find anything on the internet). I'm purely a cyclist and have also had quad issues for years that's recently progressed to a numb foot. I first noticed the problem around 2009 trying to do a short steep climb, and it's to the point now that I can't do any cycling on an incline, and the problem lasts for days after a ride. I won a stock time trial series in 2013, averaging a bit over 20 mph (short course, 10.8 miles with a few rollers). This year on the same course that's been shortened to 10 miles I am now down to 17.7 mph (from 18.8 in May-so it's getting worse quickly now).

I'd characterize it as the exact same feeling as you get when you are squatting for a while to look at a bottom shelf and stand up quickly, but I feel it in my quads. In the days after the ride I am not able to move my legs a few seconds after coming up one flight of stairs from the basement to the main level of the house. It feels basically like all of the blood suddenly drained out of my legs a few seconds after I ascend and I just can't move-like my legs are going to pass out?? Is that anything at all similar to what other people have experienced?? I've also had a problem with my left ankle for a few years, but maybe that's unrelated. I figured it might be compensation and that I'm no longer able to do a smooth controlled pedal stroke.

I've had so many tests, and they are all negative (blood work, rheumatologist). It makes me feel crazy and that I should be able to ride through it if I really wanted to. But I'm trying so hard! I've tried taking time off, interval training, long rides to ease into the season, more protein, changing diet....nothing ever works. I'm pretty depressed because cycling is really important to me (I cannot even keep up on team coffee rides anymore). I have been riding in a very aggressive position since at least 2009 on all rides; group rides, solo, TT training, etc. I used to flip the stem the first year, but haven't since then-I ride aggressively positioned 100% of the time (mostly because I was getting slower and slower and it helped me keep up on rides).

Is there any chance that I might have illiac artery endofibrosis even though I only ride 2,500-3,000 miles a year, generally (although I did hit 5,000 miles in 2010, generally it's closer to 3,000)? I am trying so hard!! Either I need to go on meds as a mental case, or it's something like this that wouldn't show up on normal lab tests. All the doctors I've seen compare me to the general sedentary American and don't take me seriously. They think my riding is sort of over the top, even though I'm at the low end compared to any one of my teammates or friends.

If it might be endofibrosis and only shows up when I'm cycling, how do I find a vascular surgeon who will take me seriously and knows how to do the testing? I live in Minnesota and could get to Mayo. If I could find out what's wrong and get back to even where I was just a few years ago, I'd be able to ride with my friends and socialize again. It would mean so much to me!

Thanks-I sure hope this thread isn't too old.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Yes, it is possible thst you have iliac artery endofibrosis. If I were you I would make an appointment with a vascular surgeon - ask to be sure they have a lab where you can do the ABI test preferrably cycling or at least by running on a treadmill. You might even want to start with a sports med doc who might be able to help refer you. If you have the symptoms where your foot is going numb, feeling cold, have weakness/achiness (to me it felt like I had a blood pressure cuff tightened around my calf and quad) then a vascular surgeon should take you seriously to do the ABI test. That test is not invasive - they just take blood pressure measurements at rest and then after the symptoms appear while running or cycling. The other possibility should be a nerve issue since a nerve issue can always cause symptoms of weakness and numbness. If you rule our vascular then you might want to have some nerve conduction studies done. Worst case, reach out to Dr. Cherry at UVA or Dr. Lee at Stanford. If you truly have IAE and can't find help locally then it is worth traveling for it. I lived in Atlanta at the time but traveled to UVA to have Dr. Cherry do my surgery because he specializes in this with cyclists/athletes.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Ok, thanks. I did an extensive search and even spoke with fellow cyclists with medical backgrounds, and there are no vascular surgeons in the Minneapolis/St. Paul area that deal with cyclists or specialize in the area of sports. I made an appointment with a surgeon, but there is absolutely no equipment to test after a ride (or even a run), so that's a dead-end. I would think there should be someone at the Mayo clinic, I just don't know how to find them. I saw someone posted Dr. Cherry's email-wondering if that's still current? If so, I can email to see if there's anyone local.

***Googled Dr. Lee and emailed-thanks! I hope there's someone local. Maybe I can do the test with my own bike, which is still in the aero setup***
Last edited by: lynne955: Jun 18, 15 11:45
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Keep searching. Not many vascular surgeons are familiar with this issue with athletes. Let's be honest, athletes are NOT their typical patient. However, you should be able to find a vascular lab somewhere that at least has a treadmill for the ABI testing. Keep looking even if you need to travel a bit to find a lab where you can be tested. If you can at least get the ABI test to confirm or rule out IAE then you can go from there, and if the test confirms you can then seek out a surgeon who has treated this in athletes.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I don't think I have a choice but to keep trying....can't live like this, seriously
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Email Dr. Ken Cherry at Univ. of Virginia. He's the go-to guy in the U.S. for this and was at Mayo before going to UVA. In fact, the vascular surgeon who did my iliac artery bypasses trained under him at Mayo. I'm sure he knows if there's anyone there who can help you, and he's been good about answering emails in the past.
Last edited by: HeidiC: Jun 18, 15 20:58
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Ok. I emailed Dr. Lee and I will also email Dr. Cherry. Like I said, if I can't find someone local, I will go to them. If I have it, it's an answer after all this time and a good possibility I can at least get back to a recreational cyclist level. I'd miss the PR's and group training rides, but would be pretty dang happy to be able to do the social team rides.

I paid for and tried to train for Triple Bypass this year (having done Ride the Rockies in 2012), but I cannot do more than 2,500 ft of climbing now. It's paid for and I'd like to hang out in Colorado so I'll go, but it's breaking my heart to know that my teammates will be there doing the ride, not to mention a few big social rides I'm missing here at home. Thanks.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
If you end up having to travel, go to Dr. Cherry. He's really the most knowledgeable and skilled in the country. There's a number of people who have posted here (maybe in a different thread?) who have traveled across the country to have him do their surgery. In a best case scenario, he can point you to a vascular surgeon in Minnesota who trained under him at Mayo, then he would consult with that doc throughout the process. That's how mine went.

If you happen to have anyone in your cycling club who is a cardiologist, she/he could likely do the ABI you need. You don't want to have it done through your standard vascular ultrasound clinic, as the method they use to assess the exercise aspect of ABI, generally toe raises, is not sufficiently difficult to cause symptoms in athletes. That was ultimately how I got my ABI assessed -- a team member who was a cardiologist did it with me running on their office treadmill, although bringing your bike in with a stationary trainer would be better. As little red mentioned, that would be the test that would at least give you a pretty good idea if you're dealing with iliac artery endofibrosis. Of course, a CT angiogram would tell you as well, but it's about 100 times as expensive and can be less conclusive.

(Edited to apologize for repeating things that were already said by little red. I didn't read until after I posted) :)
Last edited by: HeidiC: Jun 18, 15 18:29
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Dr. Cherry already got back to me with a name! He's forwarding my email. I'm so glad I found this forum. I will definitely try to bring my own bike if they agree to do the testing. I sure hope I can finally find an answer. Thanks everyone.

Lynne
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Wow, that Dr. Cherry is on the ball with emails. I'm glad he was able to give you a name. Good luck! I hope you find an answer, one way or the other. Let us know when you find something out.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Great to hear! Yes, Dr. Cherry emailed me back on a Sunday when I first contacted him back in 2009. I was really impressed with my interactions before and after surgery with him. I'm so glad he was able to refer you to someone. Good luck!!!! There is life after IAE ... I've finished 6 Ironmans and multiple other running, cycling, and triathlon races since my surgery, so stay positive!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Thanks-I'm just waiting to hear from the Mayo MD. Given all the negative tests for years now, I'm trying not to get my expectations too high (especially since I'm thinking I probably don't ride enough miles every year to have caused the artery to harden, and given all the negative tests for years now). But dang, if this is what's going on I wouldn't hesitate for a second to have surgery.

Lynne
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Little Red
Have an appointment with Dr Cherry on the 15th of July. Pretty sure that this is what is wrong with my legs (both) too. Never heard of it until I raced , badly, about a month ago and started googling. Up until then I thought I had early onset arthritis in the right leg (diagnosed by orthopedic surgeon) and the left leg was just deciding to join the arthritis party. I am only 46 so that was really not ringing true with my symptoms. Dr Cherry and his office have been wonderful so far and I haven't even been there personally yet. I just want to be able to walk up ONE flight of stairs without my left leg feeling like a club, aching and burning, at the top. Crazy that trying to be healthy and exercise can cause this. Do you have any return of symptoms at all? Most people I've talked to have only recently gotten the surgery. Interested in knowing if someone who had it a few years ago is still OK.
 
Re: Illiac Artery Endofibrosis - I've got it. [Rhonda] [ In reply to ]
 
No, I have not had any return of my symptoms. I had issues for several years before finally getting an accurate diagnosis and surgery, so I had A LOT of muscle imbalances post surgery that gave me some issues and have taken a long time to correct. I've also dealt with other injuries because of those muscle imbalances. But I also started having issues in 2003 and didn't have surgery until 2009 - so a long time to continue to train and race with limited blood supply! Since my surgery I've finished 6 Ironmans (2 more scheduled for 2015) and have raced in countless triathlons, road running, trail running, and cycling races. I have heard of people who continued to have issues later down the road, but (knock on wood!) I have not experienced this. I think I cried the first time I ran and rode post-surgery without all the pain and weakness in my left leg! You are in excellent hands with Dr. Cherry. However, you may feel bit out of place among his typical patients in his waiting room. :) Good luck!
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
If i lived in the US I would have Dr Cherry do it tomorrow.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
Not about the situation, but about racing.

Racing isn't winning, racing is doing an event you love (hopefully you love it) to the best of your ability. Unless competing is life threatening or debilitating, you can still race, and probably to the best of your ability. It's just that after the presumed surgery, your ability may be less. Race 100% and accept you did that, regardless of what the clock says.

I race to the best of my ability and generally finish MOP (when I train) and sometimes BOP if I forget to train. Generally I have a blast because I got to push myself. Sure it would be great to win, but the winner doesn't necessarily give 100% (look at Usain Bolt cruise the last 20m of the 100m most times. He wins all the time but I don't think he's gone 100% yet)

Enjoy doing your best, being your best and accepting that's all you can do. None of us are 19 anymore (except the few 19 year olds here) so we are almost all racing below our prime, but generally we race at 100%.

If you can't enjoy racing bikes or tri's at your new limit, move on to something else you enjoy doing.

Hell, I'm 54 and have 3 heart conditions. I still go out there and give 100% of what ever I can do that day. The clock means nothing to me. My best runs for example, aren't my PB's they are the ones I liked the best. I ran 30km in 10cm of fresh powder snow on a blue sky day. It was deathly quiet and not a breath of wind. It was an epic run that I still have very fond memories of. You need to get used to that kind of exercise experience rather than settling for the easy answer of just racing fast.

My 2 cents at least.....

TriDork

"Happiness is a myth. All you can hope for is to get laid once in a while, drunk once in a while and to eat chocolate every day"
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
Dr Roger Bell in Melbourne is the only surgeon in Australia that has any real expereince. He has also written a paper on EIAE.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Living with less Pain is my only goal these days and remaining active. So passionate am I that I've just qualified as a fitness professional just to show people what is possible when not 'fully able'. But....it would be nice to feel normal again.

I'm finally booked in for a review with a surgeon here in Perth (Dr K Sieunarine) ...for a discussion about future etc. I'll ask about that Melbourne doc you recommend.

Thanks
 
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
 
Me too, Melchski. This weekend I tried to do a team coffee ride to watch a race and ended up being pushed up all the hills beyond the 12 mile mark (with 3% grades). Seriously wanted to hide from everyone. Yesterday I was only able to avg 14.6 mph on a 30 mile ride with just 616 ft of elevation gain. I missed seeing and riding with people so much that I rode a route I knew I'd see lots of other people on, but at the same time I didn't want anyone to recognize me and it was really hard not to start bawling like a baby on the bike.

All of the sudden I feel like I'm in a rapid decline/tailspin. Getting in to Mayo for the ABI, and as insane as it sounds, I hope it's positive. I'm just waiting for the call for a specific date for the appointment. I signed up for Triple Bypass and all I get to do now is drive out there and maybe hike a few days (all paid for, so I'm going). I did Ride the Rockies in 2012, so I'm familiar with and have ridden at least one, if not two of the passes just a few years ago!!

Being active has been my life since I was 15 or 16 (I'm 49 now)-it relates to everything in my life. But damn, it hurts to get on the bike. I'm terrified to stop altogether because I'm guessing I'll lose anything I've been able to hold on to, as little as that seems to be :(

If I can look forward to the Triple Bypass again some year and also do some cycling vacations, I would be so unbelievably happy. Not to mention riding with my friends again! If that's all you did before you tank, there's not much else to do but sit around alone and stuff your face. Pretty sure you guys relate.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
I know how you feel Lynne.
I went from being the strongest climber in my group, to middle to last to being pushed up......all within 12 months.
Thats when I retired.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
ABI today .7 in left couldn't get the right to act up due to the left giving in in about one minute. CT tomorrow.
In Reply To:
 
Re: Illiac Artery Endofibrosis - Do I have it? [ In reply to ]
 
I have been cycling for over 35 years. I have cycled competitively at all levels (senior 1/Masters) training 10-14 hrs/week depending on the time of the year. However, approximately 18 months ago I developed a problem which I have been unable to resolve and which have prevented me from performing any structured training or racing. When I make an effort while cycling (within 3 minutes) the muscles in the arch of the foot undergo a sudden sustained contraction (cramp, spasm etc), the entire foot arches with the toes pointing upward. During this period I am unable to drop my heel (degree of ankling becomes very different between the cramped foot and the normal one) and as a result I am unable to sustain pressure on the pedal while seated. Once the effort stops, the cramp immediately subsides and I am able to pedal normally. If I increase the effort again the foot will cramp again. It is unilateral, only experienced on my left foot and there are no symptoms in any other part of the leg. The cramp is not painful and the occurrence is very consistent and is directly related to cycling intensity. At low intensity (HR<120 bpm) I rarely experience the cramp and I am able to pedal normally. When I start to increase the intensity (HR:130 -150 bpm) the foot muscles undergo spasm, always. Riding out of the saddle seems to alleviate the cramp somewhat. Amazingly, there are no symptoms off the bike and it is cycling specific. There are no symptoms when I perform any other type of exercise (eg running, stairmaster etc). The cramp is not painful and there is no muscular weakness in the leg or foot. The frequency of occurence is dependent on fitness level. The cramp occurs more frequently and comes on at a much lower intensity when I am less fit .
Once the cramping starts, I can complete the ride without too much problem although my foot (and sometimes my calf) often feel slightly numb at the end of a training ride (depending on how many times it cramps), but this symptom disappears the next day. In addition, my knee often feels a little sore and slightly inflamed for 24-36 hrs although this may be a result of changing pedal techniques or muscle usage during the cramp in order to maintain the correct pedalling action. There are no symptoms off the bike.
I have had some nerve testing and a Doppler test was performed under resting conditions- these came up normal.
Based on my research there are three possible causes. One cause may be some alteration in neuromuscular control of the foot possibly initiated from the spine or leg. I have had some chronic back problems (scapular and lumbar regions) which havenít prevented me from riding but they are a constant source of frustration. However, as I mentioned earlier, the foot spasms only appear while cycling and my back doesnít hurt while excercising. The other possible cause is vascular, exercise- induced arterial endofibrosis which commonly involves the iliac artery (iliac artery endofibrosis. However, from what I have been reading on this forum cyclists diagnosed with this type of problem generally experience pain and/or burning sensations, as well as loss of leg strength in the upper part of the leg. I do not experience these symptoms, although my foot cramp is directly related to cycling intensity which is a common observation in cyclists experiencing endofibrosis. The third possible cause is an improper bike fit resulting in some type of asymmetry regarding my position on the bike.
I would appreciate any input from anyone at this point as I am desperate to resolve this problem
 
Re: Illiac Artery Endofibrosis - Do I have it? [london knight] [ In reply to ]
 
That doesn't really sound like IAE, but the only way to know for sure to have an ABI test done. My symptoms were more weakness, feeling like I had a blood pressure cuff constricting my quad and calf, feeling like I was dragging my leg, numbness in my ankle and foot, my foot would feel cold, etc... but zero symptoms/issues if I wasn't running or cycling, or even after. You mention back issues, which could cause nerve issues in your foot. I'm not sure if you had an EMG to just test the nerves in your lower leg or if you've had any testing to see if this issues is coming from your back. I've also heard of the popliteal artery entrapment, so you might want to research that to see if that matches your symptoms. Good luck figuring it all out!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
EKG & ABI test on 7/23-the earliest I could get into Mayo. Got quite a bit worse the past week with constant light headedness, ringing ears, nausea and more of a drop in speed (now doing 14.7 mph on a 50 mile flat ride). But seems it was some kind of temporary worsening as I'm feeling a bit better today. So frustrating. I'll post more after the ABI. I don't know if everyone else has slightly different symptoms-I'm definitely concerned mine don't seem to fit, but I'll see! Thanks.
 
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
Thanks for the feedback. While the foot numbness does occur in my case. I have no problem with the upper part of the leg and no strength issues. Mine is primarily an intensity related cramp of the foot muscles. Neverthless I will try and find a lab that can perform an ABI test
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
I'll let Mayo do the diagnosing, but some of the recent symptoms you mentioned, along with the weakness, made me think autonomic nervous system issues. Of course, nausea, light-headedness, and tinnitus can be any number of things, but you might want to google POTS (Postural Orthostatic Tachycardia Syndrome) as well if you're having issues with low blood pressure and heart rate increases when you stand. I don't know enough to know, but maybe? POTS symptoms would extend way beyond riding, though.

And let me add that the above is completely inappropriate internet diagnosing on my part....
Last edited by: HeidiC: Jun 29, 15 18:38
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
HR doesn't go up (and that stuff is very recent, although it is making it hard to be on the bike enough to try to maintain the muscle/fitness I have). The feeling like I have exhausted, bloodless legs (like a ton of lactic acid) after doing any effort has been consistent and had been slowly progressive until about a month ago when it fast tracked itself (the first time I noticed it was in 2006, but it was very rare then). Can't tell if the constantly sore calves (like I'm on the recovery day from weight training every day), left leg feeling like it's falling asleep frequently throughout the day, and light headed issue is related. Maybe all vascular? I'll find out on the 23rd!
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
That actually does sound more vascular. Hopefully, you'll have an answer soon!
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Can anyone provide me with Dr. Ken Cherry's email?
 
Re: Illiac Artery Endofibrosis - I've got it. [london knight] [ In reply to ]
 
He's at University of Virgina (UVA). His email address is on the page below. If that doesn't work for some reason, try googling further.
http://www.medicine.virginia.edu/...th-j-cherry-m-d.html
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
thanks!
 
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
Little Red

Do you recall how long after the surgery could you do a brisk walk....say 2 miles.
How long after the surgery could you ride a bike......small rides.
How long after the surgery could you compete.

thanks

ken
 
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
 
Honestly I would have to check back in my training logs to give you an accurate answer of exactly when I started running and cycling. I was walking right after surgery - but I wouldn't call it a brisk walk, that was probably at least a couple weeks after since those first couple weeks you really need to make sure the graft heals and don't want to do anything that could cause a tear or damage. I know I was in the pool in just under 2 weeks and it was less than 2 weeks after that I was able to do the full masters workouts again. I know by 6 weeks I was running and riding - nothing fast or long - but doing both. I had my surgery a couple days after IM Louisville and I did some late November and December running races.
 
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
thanks

i am thinking about surgery October 2015 and looking to ride in Belgium in July 2016.....not difficult riding but around 60 miles each day for a week.
 
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
 
I'm not little red, but I had the same surgery she did. Brisk walk was about two weeks after surgery. Back in the pool at three weeks (once the incision was totally healed), but VERY easy. My surgeon wanted me to stay off the bike entirely for six weeks. Also no running for six weeks. I had my surgery done in late July of 2011 and walk/jogged a 10-miler in mid September. Back racing in 2012. You should have no problem at all riding 60 easy miles a day in July '16 if you have your surgery this October.
 
Re: Illiac Artery Endofibrosis - Do I have it? [Eileen] [ In reply to ]
 
Thanks Eileen

great feedback.

now just have to select the surgeon.

cheers
ken
 
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
 
You should be fine by July if you have surgery in October. I would say I was back doing regular racing and training by December and I had surgery in the first week of September. I had a pretty aggressive race season the spring/summer/fall after my surgery including another Ironman. The good thing about having the surgery in the fall is you have the "off season" to recover and build back up for the next season. Be sure when you start back that you address any muscle imbalances that may have developed from not having full blood flow to your left leg!
 
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
Thanks Little Red

I shouldnt have muscle imbalances as I have EIAE in both legs but i will be sure to check everything.

thanks
 
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
 
I had EIAE in both legs as well and had all sorts of muscle imbalances, some of which I'm still addressing 4 years later. Granted, my arteries were blocked for 25+ years, but I wouldn't assume its presence in both legs rules out muscle imbalances. There are consequences to muscles not getting adequate blood supply. Also, the imbalances would be within each leg.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Thanks Heidi

understood... i can beleive there may / will be imbalances because my left leg is also worse than my right leg.
 
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
 
I am traveling to see Dr. Cherry on the 13th with surgery scheduled potentially for the 17th. Can anyone let me know what to expect? I'm specifically concerned with how long I should plan on being in the hospital after and how limited will I be in the days/weeks after the surgery.
 
Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
 
 I went to see Dr Cherry for surgery in June of 2013, this was my schedule.

June 12th > I met with Dr Cherry and an intern. We went over my records and discussed the prior two surgeries that had made the condition worse. I told him I believed I had it in my right leg as well. He agreed to have them take a look at the right leg when they did the angiogram. After that appointment they had me go downstairs and get registered in to the hospital. About an hour after that I had the angiogram performed on both the right and left leg. Dr Cherry came in to see me right after the angiogram and confirmed what I had suspected I did have it in the right leg as well. It was decided then that he would perform do the grafts on both sides during surgery. I went back to my hotel that afternoon. That evening I went back to the hospital and spent the night.

June 13th > I went in to surgery at 7:00 AM , I woke up from surgery at around 7:30 PM, surgery lasted 8 hrs . Dr Cherry did a midline incision and another incision on the right side from the iliac to the femoral artery because the endofibrosis was there as well.

June18th > I flew home to Seattle and don't remember much of the trip home. I could not walk more than a couple steps at that point so we used a wheel chair for the trip home.

Once home I was in bed for a week flat on my back . I was able to slowly walk about a mile within a couple weeks. 6 weeks after surgery I could get around pretty easily but was still very sore. 8 weeks I started some PT and tried some very easy jogging. Late Oct I tried some cycling and have cycled off and on up until now.

Everyone's experience seems to be a little different. In my case I had this for close to 6 years before I finally figured out what the problem was and then had two surgeries that made the condition worse . My recovery and how I felt after each one of the surgeries I had was different.

Hope this helps.

Jill
 
Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
 
Dr. Cherry didn't do my surgery; hopefully more of the people who traveled to see him can chime in. I had both of my iliac arteries bypassed at the same time, so a midline incision with two smaller incisions in the groin area. I think I was in the hospital for two and a half days; was walking gingerly around the hospital unit by the second day, although the incision area was still pretty painful. I don't remember the specifics, but I think I was walking around the block within a week and doing longer walks within a couple of weeks. I was off work for 6 weeks. During that 6 weeks, I spent a lot of time in bed because of how tired I was (presumably a combination of anesthesia and blood loss after-effects), but I didn't really feel bad. Any pain is related to the healing of the abdominal muscles around the incision.

I've addressed time back to activity above, when I remembered better. I think I was on the trainer at 6 weeks, cycling outside around 8 weeks, did a hilly century 6 months later. My doctor specifically wouldn't let me swim for 6 weeks. There was a reason for that but I don't remember what it was -- something about stress on the incision and grafts in the freestyle swimming position. My standard caution: don't push yourself to go back to activity too quickly; follow Dr. Cherry's orders. You don't want to mess this up.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Hello community,
I am facing a patch angioplasty for 50% stenosis of the right External iliac artery and a complete bypass graft for 100% occlusion of the left external iliac artery due to severe endofibrosis. The section of artery on the left I am told is quite large/long, but no idea what that actually equates to. I am located in Mpls, MN and would love it if someone could recommend a Dr. in the Twin Cities who has experience specifically with athletes. I have consulted with two great surgeons so far, one at Abbott NW and the other at HCMC. But I believe both of these surgeons are accustomed to your more typical vascular patients, if you know what I mean. Both however have performed over 100 patch angioplasty and complete bypass graft surgeries so I I do feel comfortable in their capabilities.

One doc suggested harvesting a piece of vein from the groin/thigh region to complete the patch angio on the right. This would require two incisions on the right. The other doc suggested the use of bovine pericardium, so I would have only the one incision on that side. Anyone out there have experiences, pros/cons, thoughts on the two materials or about avoiding another incision? I think someone commented on this at some point....

On the left both docs have concluded a bypass graft is necessary using artificial ptfe or dacron. The difference is that one suggested leaving the section of occluded artery in place and just bypassing around while the other would plan to remove that long clogged portion of the iliac. Anyone out there had 100% occlusion and had the blockage left in place while bypassing around? That seems to be less common and I found it kind of surprising.

I just turned 30 a month ago and am not too thrilled about being faced with this, especially after watching YouTube videos of the procedure ;) I love biking. A lot. For the previous 6 summers I was riding an average of 300mi. a week as well as racing a handful of various distance triathlons each season. I also race road, gravel, cyclocross, and love going for the 150 and 200mi. events. I also XC ski which I was finding extremely difficult last winter - now I know why. The condition has been progressing for the last couple years but I had a severe drop-off this spring which led to all the frustrating doc appts until I discovered the condition through my own research. testing ensued and here I am. I should also note I have a partially torn labrum in the left hip and scar tissue, bone spurring and signs of damage in the right.

Anyone out there who regrets having their procedure(s)? Anyone having negative experiences 2,3,5 10 years down the road?
My apologies if I am repeating any of the earlier conversations here, but would love to hear from someone about my age who was able to return to 100% form and race and 100% intensity. My legs have been limiting me for the last 3-4 years, not my lungs and I'm ready for that to change.
Thanks
 
Re: Illiac Artery Endofibrosis - Do I have it? [cyclomanic] [ In reply to ]
 
There are not many surgeons who work with athletes with this condition, or are familiar with IAE in athletes. Yes, your typical vascular patient is not a young and healthy endurance athlete. I'd like to think that a skilled vascular surgeon could do this surgery successfully, but I would (and did) prefer to go to an expert who has done this surgery on countless athletes. I lived in Atlanta at the time of my surgery and traveled to Charlottesville, VA to have Dr. Cherry at UVA perform my surgery. He is considered the expert in the US. I believe one of the other expert is Dr. Lee at Stanford. You might be able to contact him to see if he can refer you to a surgeon in your area, or go to the best and travel to have him perform the surgery. If you do a google search for Dr. Kenneth Cherry you should be able to find his contact information. And no, I don't regret having the surgery for a second and for what it's worth, I was in my 30s when I had this surgery. It allowed me to get back to doing what I love!
 
Re: Illiac Artery Endofibrosis - Do I have it? [cyclomanic] [ In reply to ]
 
There was someone above (lynne955) from the Minneapolis area who was searching for a local vascular surgeon related to this condition and found one. You can try replying to one of her posts, with the hope she gets a notification email and responds, or you can send an email to Dr. Ken Cherry at UVA, who was with Mayo Clinic and (apparently) has a surgeon relatively local to you that he refers to, which is how lynne955 found her surgeon. Dr. Cherry's web page is linked in a post above. Absolutely no regrets from me about having the surgery, but I do know someone for whom it was not successful. Joe Dombrowski is a little younger than you and recently returned to the pro peloton after a graft, although only one leg. I had both done as well and have had a good return to form, but I'm old and had it for a very long time, so there's no way to tell how I compare post-surgery to what I was before it started. You might want to read through all the earlier posts, as there is quite a lot of information accumulated there.
 
Post deleted by Flick30 [ In reply to ]
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
You really need an ABI, using your bike on the trainer for the exercise part. That is likely to give you the most immediate (and cheapest) info.
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Hi

Yes i am in Brisbane and I have also had an appointment with Dr Bell who I know has had good experience with EIAE.

to determine if you have EIAE you will need to have your ABI done before, during and after cycling.

This is how mine began.

ABI test before ride. ABI's OK.
15 minute warm up medium intensity. ABI's undertaken during pedal stroke. ABI's uneven.
High intensity. I think i rode for around another 15 minutes where i put myself in the hurt box. Heart rate maintained at around 160-170bpm Intense pain in both quads and calves.
Off wind trainer and straight on bed. ABI's undertaken every 2 minuets for 10 minutes. ( i was helped onto the bed quickly with both shoes still on )
At 0 minutes ABI's around 0.35 for both legs ( still in intense pain)
ABI's recovered every 2 minutes.
At 10 minutes ABI's around 0.9 so nearly normal.
Conclusive results backed by surgeon in Brisbane and then Dr Bell. EIAE both legs.

My initial ultrasound was clear as was my CT scans.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Thanks for your info. I always go into self doubt mode when tests come back clear. Did Dr.Bell organise your ABI or did you have this done before visiting him?
In Reply To:
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Hi

No i was first seen by a sports specialist Dr Richard Brown here in Brisbane who suspected that the cause of my issues were EIAE. I was sent for CT scan + normal ultrasound.
After negative / normal results he then sent me Queensland Xray diagnostic centre to specifically test for EIAE.
I had to take my bike and wind trainer because they only had running machines.

After the tests they provided me with copies of the report and all the ultrasound images that were taken during the tests.

I sent one copy to a Vascular Surgeon here in Brisbane and after his consultation which was " As you not a professional athlete I would recommend you stop cycling / sports because you have EAIE " or words to that affect. I then, a couple of weeks later sent all information to Dr Roger Bell in Melbourne. I didn't need any further testing as the results were conclusive.

If you don't mind me asking how old are you..... and are you a competitive sportsperson.

Regards
ken
 
Post deleted by Flick30 [ In reply to ]
Last edited by: Flick30: Aug 14, 15 22:31
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Yes take it one step at a time.
If you are an elite athlete though you will need to have the surgery sooner than later if it is EAIE.

You may know Travis Meyer and Stuart Ogrady had EAIE corrective surgery and both went back to professional cycling within 6 months.
Please keep i touch and let me know how things pan out.

k
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
I did give cyclomanic the info I had, but I didn't have much-I've just had one visit. I'm actually getting some local info from him, as I need to do some follow up.

Spent the whole day at Mayo for basically the ABI and then to meet with Dr. Bower. The ABI test was weird (they said they are learning, and I did not have a BP cuff on while doing it, and wasn't given any instructions/direction). Was told the test was normal but need to do a CT in the cycling position and need to have heart/lungs checked as I just cannot get enough air to do anything for some reason. Also getting headaches all the time (never been a headache kinda person).

However, when I asked them to send me the test results and also Dr. Bower's summary, they actually weren't normal. Apparently I'd misunderstood. It wasn't terrible like everyone else here (in fact, it was normal pre-exercise), but was abnormal post exercise and result was mild peripheral artery disease on both sides. Ankle BP actually does the opposite of arm BP (goes down when arm goes up, and when arm BP goes down, ankle BP goes up. Ankle BP 5 mins later was actually higher than pre-exercise, I don't know why. But again, lowest number wasn't terrible at .71 one minute after exercise).

I have VO2 max testing on Tues because there is concern it may come back at the level of a sedentary person. Also because I have a history of a prior lung infections, and had pneumonia once and bronchitis twice within the past three years.

Bottom line, mild bilateral peripheral artery disease with no risk factors (not diabetic, not obese, low BP, etc). I'm worried it's cardiac related or lungs. Should know more Tues. VO2 max isn't going to be good since I've basically been inactive for a few months, but apparently it should still tell me if it's heart/lungs.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
Sorry to hear about your diagnosis. It's good that you saw a vascular surgeon. I work with vascular surgeons and they have the ability to treat you with opne surgery or endovascularly which is miniminally invasive. I believe that your are young enough to have a healthy recovery with open surgery should that be a what your surgeon is suggesting. I would also get a few opinions since surgeons skill sets are all different. Some surgeons are better at open surgery while others are better at endovascular surgery so they may be biased towards one way of correcting the problem. Good luck.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
I traveled to see Dr Cherry just a couple weeks ago. My pre appointments were friday including a meet with his office and an angiogram. My surgery was monday. I can't say enough about Dr Cherry, his team and the staff at UVA; they are amazing. When I had questions and concerns I was given easy access to Dr Cherry himself. I left the hospital Thursday afternoon and stayed an additional night at local hotel before heading home to Chicago. Id be happy to answer any questions. I am recovering very well. Dr Cherry and his PA David are really happy, almost shocked. I've been walking per their permission 45min 3x a day starting one week from the surgery day. Obviously certain things are still painful but I'm getting around pretty well. I am very happy about my decision to go to Virginia. Dr Cherry did tell me that there was someone at Mayo who he trained or worked with that was very good so if distance is an issue Id check him out.
 
Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
 
Great to hear! Dr. Cherry really is amazing. He and his staff were also great post-surgery if I had any questions. Recover smart and look forward to getting back to running and cycling with 2 legs again soon! :)
 
Post deleted by Flick30 [ In reply to ]
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
Not sure if I'm in the right thread. My question has more to do with post-op follow-up. I'm about 11 months post surgery ... bilateral bypass from the common iliac to the femoral artery + the ligaments cut/trimmed in the groin (not sure what you call that). Started having problems with my legs at 28 and was diagnosed and had surgery at 30. If you've had surgery, are you having ABI tests now or do you press for stress tests + ABI? My thought is if I start having problems again, it would show up sooner with stress. And is anyone having problems in your calf muscles post surgery ... lots of cramping and knots? I'm trying to figure out if my calf problems are due to my lack of blood flow for years or if it's a completely different issue (probably in my hips). Cycling is going well but I can't seem to get running again. Quads feel good. My calf muscles do not. Thanks in advance!
 
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
I had some issues for the first year post surgery, which I found out were from muscle imbalances. It's very possible you are having some calf issues from muscle imbalance from the time you weren't getting adequate blood flow to the leg. My issues went away with a lot of strengthening work, which in my case was mostly glute strengthening. I had an ABI at my 1 year follow up and haven't had any since. I don't see any reason to get another unless I started to have symptoms again, and if I started to have symptoms again I would start with an ABI test. I don't see don't why you would get a stress test if you are wanting to check the iliac or femoral artery. The best test would be the ABI test. The stress test is not going to show if you are having blood flow issues to your leg.
 
Re: Illiac Artery Endofibrosis - Do I have it? [little red] [ In reply to ]
 
Sounds good! Thanks! Looks like I may be going in the right direction with my strength training. And I may be using the wrong terminology when I say stress test. Part of my diagnosis process was running (or attempting to run) on a treadmill then doing the ABI to see how much the pressure dropped in each leg. I wanted to make sure that's not something that I need to have done in the future for follow-ups. I think my doctor wants to do ABIs every 6 months now. I've already had 2 since my surgery.
 
Post deleted by Flick30 [ In reply to ]
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
Same as little red -- lots of muscle imbalances from the lack of blood flow over the years -- in my case, they also particularly manifested themselves in my calves while running. I work with a Muscle Activation Technique practitioner and it's been incredibly helpful. I couldn't run before I took that step; it's cleared up problems I had for years before my surgery. I've had several ABI tests since my surgery, although only a couple that involved cycling as the exercise form. That is where problems will show up first, assuming it is an ABI with exercise and the exercise is "real" exercise. Sounds like either running on a treadmill or stationary cycling for the ABI would give you a good idea of what's going on.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Thanks for all the info Heidi! I'll look into finding a Muscle Activation Technique practitioner.
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
I went to Mayo and they didn't know how to get a CT in the cycling position, so the techs tried various positions. At first we were trying stuff on my back, but we ended up doing the scan kneeling with my butt to the machine. I cannot hold that position using my thighs because they start shaking really bad, so I braced with my toes. It's pretty hard to describe, but I put my arms forward like I was in the drops. It was a bit more bent than actually being on the bike, but pretty close and seems to have been successful. The first regular scan (lying flat on your back) was normal, but bent showed kinks in the juncture of the iliac and common femoral arteries on both sides. The left was very minor, the right narrowed the lumen by at least 50%. However, I don't know what an angiogram is or if you can get in the same position for that. I just thought I'd offer the info in case it might be helpful?
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Yes I had the same problem when I went to have a CT. Mr Dr requested it to be in the hyprexed position, but the CT operators on the day had me flat. I would have fitted through the machine! The angiogram is where they inject the contrast dye via femoral artery and take a single plane X-ray of the arteries. I did have the knees bent but couldn't get the hip flexion as you can't sit up and the X-ray machine only allowed knees to bend so far.

If it's kinking causing the blood flow problem, then is it just a release of the artery? There won't necessarily be endofibrosis on or in the artery? or is it the kinking that causes the arterial endofibrosis and lesions ?

Thanks again :-)
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
When Dr. Cherry did my angiogram he moved my leg to flex my hip as if in the cycling position. I believe he is one of the few vascular surgeons (at least in the US) that replicate the cycling position during the angiogram with cyclists/triathletes. And yes, the ABI will show if you have blood flow issues regardless of if just the iliac, iliac and femoral, etc... but it will not pinpoint what artery or arteries are involved. The angiogram will pick up which arteries have the issue - in my case it was the iliac and femoral artery.
 
Post deleted by Flick30 [ In reply to ]
Last edited by: Flick30: Sep 5, 15 20:33
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
The issues with my arteries showed up while I was lieing flat. In my case my flexing my leg into the cycling position showed my issue was due to the inguinal ligament restricting the artery, so part of my surgery was to release the inguinal ligament. My understanding if that he could see there were areas where the arteries were blocked with scar tissue build up, but flexing the leg showed the effect of the inguinal ligament on the arteries. I'm sure this would also clearly show if there was a kink in the artery. I race and train with a more open hip angle since my surgery, just to be on the safe side.
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
I'm still in the process of getting diagnosed, but from everything I've read (and like most folks here, I've read a *lot*), the kinking is caused by an anatomically long artery which eventually further gets blocked by scar tissue building up inside the artery. However, I've never been very good on the bike and do it for fitness and to stave off old age, so I do not have nearly the miles that everyone else here has :) I rode 5,000 miles in 2011 and then steadily decreased since then (last year due to my basement flooding, so I was pouring a new slab and tiling, etc instead of riding). Don't get me wrong; I'm dead serious about fitness and very goal oriented, I've just never been that fast. Took me 6 years to finally break 20 mph avg on a short 10 mile slightly hilly TT course.

I started noticing problems in 2007 shortly after I was diagnosed with Celiac disease (I thought that's what it was, and I'd only been riding a few years at that point). Ironically, I fell in love with TTs that year (after trying CX, crits, and road races) and went for a bike fit. I didn't know it would be a problem to be aero in all my rides (group, solo, training, races) so I just left it in TT position all the time. This is the best side shot I can find (lots of photos from the front or angled a bit front to side!). This is how I've been riding since 2007 (I do stock only):

http://lh3.googleusercontent.com/..._5807.jpg?imgmax=800

(I miss that TT and sure hope I can do it again next year!!!)
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Hi

Make sure they also undertake ultrasounds with the ABI's. I'm sure they will.

Cheers
K
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Hey Heidi, Do you remember how many sessions you had with a MAT practitioner? Or are you working with one all the time? It looks like I'm going to have to go out of state to see one. I'm planning on heading to Dallas soon to see a friend so I thought I'd try to make an appointment with someone.
 
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
Unfortunately, it is kind of a long term process, and an expensive one as well since it's not covered by insurance. Did you look at the MAT website? If you'd like, I can ask my guy if he knows of someone in your area.
 
Re: Illiac Artery Endofibrosis - Do I have it? [HeidiC] [ In reply to ]
 
Yeah I contacted the website. No one in my area. I'm heading to Dallas tomorrow. So, I'm going to meet with someone Thursday and Saturday. Maybe Friday too. He said he thinks someone from Little Rock may be in the middle of their certification. That could be a good thing! But I'm also trying to pay off all the medical bills ... not add to them! Granted, I also want to be able to run well again! Thanks for your help :-)
 
Re: Illiac Artery Endofibrosis - Do I have it? [eme620] [ In reply to ]
 
Good luck, I hope it's helpful for you. I know I was pretty much a huge tangle of muscle imbalances. Like I said, it's pretty expensive, but it made a huge difference for me.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Hi Kenpet - I finally have a diagnosis (just). I have 'Common Iliac Artery Endofibrosis'

I'm not sure If i'm a normal human :-) When we did the ABI it returned a 'normal' reading. This was after a solid ride on the stationary trainer and symptoms were alive and kicking. I had one cuff on the right arm and then two on each ankle. Doppler Ultrasound showed nothing on the external Iliac artery. After this test, I didn't have vascular problem, and that was certain. I just collapsed on the bed....thinking its all in my head, im just going to give up sport.

The Doc popped back in to the room and asked for the Common Iliac to be Ultrasound, which seem to be quite a distance from the external iliac scan location. After not many words said by all, I had no idea what was going on. I just felt embarrassed to have wasted their time with with months of searching. The ABI had turned up normal and I knew the ABI was the most definitive test to identify Vascular problems. I felt stupid.

A post- test chat with the Dr and he said the Doppler Ultrasound actually picked up a Peak Systolic Velocity (PSV) in Common iliac of 450+. Apparently a rather high reading (compared to normal) and an indication of arterial blocking. We found the problem but I wasn't convinced, and either was the Dr, as the ABI was 'normal'.

After 24 hours of everyone thinking (Sports Doc, Vascular Doc and Me).....It was confirmed as Endofibrosis of Common Iliac. Both the 'dot' picked up in the angiogram, The PSV of the artery and the symptoms were enough to confirm / convince.

Where to from here...surgery to fix. But lots of questions to ask before making a decision:-)

Have you decided when and where you will have surgery e.g In Melbourne ?
Last edited by: Flick30: Sep 13, 15 21:06
 
Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Hi

I dont know much about Common Iliac Endofibrosis and in particular how ABI's can be normal particularly if the artery is indeed blocked.

Given that this is the diagonosis have you consulted with Dr Bell as too what procedures are required/recommended to recitify the artery.

Was it only in one leg or both.?

Does the common iliac bend when in the riding position.?

Has the artery wall been compromised or is it in good condition.?

Sorry lots of questions.....which I'm sure you will be researching. Good luck.

I haven't decided as yet........but still weighing up my options.

 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Have any of you who have suffered from this condition ever had arterial blood clots in the legs as a result?
 
Re: Illiac Artery Endofibrosis - I've got it. [Pebble] [ In reply to ]
 
I can't speak for the others on this thread, but no, I have not.
 
Re: Illiac Artery Endofibrosis - I've got it. [Pebble] [ In reply to ]
 
Pebble wrote:
Have any of you who have suffered from this condition ever had arterial blood clots in the legs as a result?

I had a venous blood clot (DVT/PE), which is a different thing. They say it's unrelated, but I'm not sure I'm buying that. I presume you've had an arterial blood clot? If so, I'm sorry. That can be a really bad situation.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Yep 2nd batch of arterial clots, this time in the left leg, reading back there are a number of posts that give me confidence.
 
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
 
I second Dr Cherry

Swifty

 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
My name is Tammy and I think I might have talked to you before I had surgery with dr cherry. Are you a bike fitter? I live near Chicago? If I did talk to you over the phone could you please email me. I have a question about bike it.

tammyclifka@sbcglobal.net
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
After having gone through a butt load of testing, it appears I have more than one issue going on. Fortunately no cardiac involvement. MD and therapist are at odds, but definitely some physical issue with my left foot and with my right hip. I also seem to have a variation of EIAE. I do not have scarring, but have a kink in the junction of the exterior iliac and femoral arteries on both sides. In a bent position the kink causes about a 50% constriction of the vessels on the right and really no constriction on the left. The options are surgery to shorten the external iliac or patch the distal external iliac and proximal common femoral artery. I haven't followed up yet to learn if it's an either/or, or if he won't know until he goes in which is necessary.

For now I've had to give up the road bike and am just doing 28 miles/wk on a fat bike, plus running 2 miles a time or two a week. I'm trying to treat the ankle and hip, as both are pretty painful. However, due to insurance issues I need to get any surgery done this year, so I'll be following up next week. My problem will be having to find some way to get to/from Rochester, MN (as Dr Bower is who my insurance is authorizing me to treat with) and being able to take care of my house and stuff while I heal as I don't have anyone to help out with that stuff.

Anyway, should know more next week and plan to have some type of surgery before the end of the year (and then complete rehab; I've lost muscle on the left and can't curl a few toes on my right foot, to name a few repercussions of the foot and hip issues).
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Anyone ever had a CT show a tortuous artery and a kink when in the cycling position with no artery wall thickening/scarring visible, but then when they do surgery they find you had scarring? Just curious if that happens, and how often. Surgery is tentatively scheduled for 12/23 (trying to avoid having to pay large deductibles and out of pocket maximums over two insurance plan years). Surgeon is kind of 50%/50% as to whether releasing the artery (and shortening it, I think) will help since I only have it in my right side and there's no wall thickening (that's my power side!). He would only feel confident if it was on both sides. Personally, I'm grateful it's just one side :) I always feel the "lactic acid" thing in both thighs with any effort, so I guess I'll see!
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Hi Lynne--Sorry I missed your previous post. I'm glad you've been able to get at least a tentative diagnosis, but so sorry you have so much going on! I don't think that's really unusual with these blood flow issues -- hard for muscles/joints/tendons to respond correctly when they aren't getting appropriate blood and/or when you're compensating for those issues. I don't have personal experience with no visible scarring (mine was very visible on the CT!), but I know that mine was much worse than the doctor was expecting from the CT. I think all the diagnostic tools, while pretty miraculous, are only able to give an indication of what's going on and not the full picture, so it seems as if it would be completely possible that they would find something more or additional once they can actually see it up close and personal. Is the surgeon you're going with the one who was recommended by Dr. Cherry?
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
No problem! This is a pretty old thread now :) Yes, this is the surgeon who was recommended by Dr. Cherry. I'll be interested to see what it looks like when surgery is done. He was trying to dissuade me and I understand why (he keeps pointing out that it should only impact me in cycling and that I'm not a high level athlete), but given that I sleep in a fetal position and tend to sit with my legs curled up, it would be nice if I had circulation sleeping and sitting, too :)

I started pedaling inward toward the top tube maybe 5 yrs ago or so, and started hitting my knee on the top tube this year. Massage therapist and fitters told me the inside of my thigh is really tight but no matter how much I tried I couldn't stop doing it. I was considering adding blocks to force me to use the outside of my quads more. Guessing that's probably how some of the stuff that needs PT evolved (compensating).

I wish the surgeon would at least tell me how long I need to be off work, etc. He keeps focusing on the stuff that needs PT, and that this is basically only necessary "if you want to keep cycling". Um, yeah-even if I can't race and defend the 2013 TT series win that I worked 4 yrs to get, it sure would be nice to be able to do the cycling vacations that had become the highlight of my life the past 10 yrs!

Anyway, guess I'll find out in December if he doesn't change his mind :)
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I've read a lot of post on here and what bothers me the most is how people keep saying that the problem won't fix itself. That is a flat out lie. Obviously you have to trust your specialist opinion over anyone on a public forum and self proclaimed student dr.s good grief. From what you are saying tho, is that your only compressing the artery while cycling so the simple answer is to STOP cycling, hello!?? However I know how obessive cycling could be so a positional adjustment might be the key to continuing without any symptoms regular check ins with your specialist to make sure things aren't getting worse. By what you are saying I would also say to take breaks while riding and stand up straight while on the break. I think you'll be just fine. I'm proof that the problem fixes itself. I completely blocked my iliac artery and while it blocked shot clots behind my knee but the body makes bypass arteries to compensate I had a bypass at the iliac and at all three major arteries at the knee. I could go back as is and still push well over 4 watts per kilo and be competitive enough as is, surgery would make me much much better, but as aggressive as I ride I prolly need a graph and all the risks every 5 or so years a stint every other ride or run the risk of ruining my "fixed itself bypass" at some point, so I decide not to ride row or run. Right now my Abi at rest in my leg is .79 which isn't bad but isn't normal my team of techs nurses and surgeon are confident I will get that number back around 1.0 as the body continues to heal itself as it as been. I know this thread is kind of old so what did you decide to do and where are you at today??? Hope everything worked out for you!!! On top of all that God makes the decision on what happens so I trust his will is to only continue to fix my leg:)
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
This problem will not "fix itself" and is very specific to each individual's anatomy. Most folks do not discover this problem until the iliac artery has been damaged. There are many medical studies that show the problem does not repair itself.

Interesting to note that you have only registered to post today and this is your first post.

I would be curious as to who your doctor is that told you this would fix itself. Not to be sarcastic - but if your body made a new artery to bypass your existing iliac artery, I would say you are a medical miracle and recommend that you donate your body for study after you die
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
And what is your expertise? I'm going to trust the x-Rays the three vascular surgeons (who I will admit are a bit baffled by what my body is doing) the ultrasound tech and all staff and family who have been supporting me in this ordeal or a guy on a forum calling himself the mad cyclist. But thanks I guess, it is bit of a miracle from God I will admit. But as for it being my first post, yes I have been doing some internet research (which is bad) about my issue and was reading through the post and wanted to let the orignial poster know that there was legitimacy to what his dr was thinking which is a no duh, he is the surgeon! Thanks again
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
I trust your claims just as much as you trust mine . . .

If you have actually been consulting Dr. Google, you will find that medical research does not support your claims.

Again, I would love to know where you are being treated and the names of your vascular surgeons treating you. I am also curious about their experience with this condition.
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
You pretty much just told me to trust Dr. google, over my 3 renowned Vascular Surgeons ...... that's the stupidest thing I have ever heard of.... I'm done replying to your comments.
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Well, I guess God just doesn't love me as much as he loves you. I gave up cycling and running and grew all sorts of collateral arteries. And, yet, I ended up with both iliac arteries blocked, exercise ABIs below .3, and barely able to walk. Resting ABI is rarely the issue; itís the exercise ABI thatís important, assuming you would like to do even some basic exercise (say, walk) -- even at my worst, my resting ABIs were the same as yours. All that spaghetti-like crap in the picture below is collateral blood flow, the "fixed itself bypass" you refer to. Didn't solve the problem.

The only reason I'm responding to this is because I know this thread turns up high in Google searches on iliac artery endofibrosis and I'd like others who read this to be well-informed. But like themadcyclist, I'd love to know the names of your vascular surgeons and their experience with this condition.


 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Simple request - please identify your 3 "renowned" vascular surgeons who have told you this,
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Awe man, sucks for you... I'm assuming you're older... I have since your first reply... My collateral is just one big artery, does t look anything close to that. Hopefully you keep pushing through the pain and those noodles will turn into strong healthy adiquite compensating ones. Good luck buddy. I will pray for you because God does love you every bit as much as he loves me.
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Johnavelo9 wrote:
I've read a lot of post on here and what bothers me the most is how people keep saying that the problem won't fix itself. That is a flat out lie. Obviously you have to trust your specialist opinion over anyone on a public forum and self proclaimed student dr.s good grief. From what you are saying tho, is that your only compressing the artery while cycling so the simple answer is to STOP cycling, hello!?? However I know how obessive cycling could be so a positional adjustment might be the key to continuing without any symptoms regular check ins with your specialist to make sure things aren't getting worse. By what you are saying I would also say to take breaks while riding and stand up straight while on the break. I think you'll be just fine. I'm proof that the problem fixes itself. I completely blocked my iliac artery and while it blocked shot clots behind my knee but the body makes bypass arteries to compensate I had a bypass at the iliac and at all three major arteries at the knee. I could go back as is and still push well over 4 watts per kilo and be competitive enough as is, surgery would make me much much better, but as aggressive as I ride I prolly need a graph and all the risks every 5 or so years a stint every other ride or run the risk of ruining my "fixed itself bypass" at some point, so I decide not to ride row or run. Right now my Abi at rest in my leg is .79 which isn't bad but isn't normal my team of techs nurses and surgeon are confident I will get that number back around 1.0 as the body continues to heal itself as it as been. I know this thread is kind of old so what did you decide to do and where are you at today??? Hope everything worked out for you!!! On top of all that God makes the decision on what happens so I trust his will is to only continue to fix my leg:)

As others have already responded, this issue does NOT fix itself. Sure, stop cycling or running and you don't have the symptoms or problems because the problem is not at rest but when active. This is the same flaw when you say your ABI is normal at rest. My ABI was normal at rest before surgery too - but it was far from normal during and after exercise, which is the issue. The issue is not at rest. Saying that IAE will fix itself it the flat out lie. When you are completely "fixed" (without any surgical intervention) and have a normal ABI during and after cycling/running then you can say you are "fixed", but you even admit you aren't "fixed" now... so how again has your IAE fixed itself?
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Johnavelo9 wrote:
Awe man, sucks for you... I'm assuming you're older... I have since your first reply... My collateral is just one big artery, does t look anything close to that. Hopefully you keep pushing through the pain and those noodles will turn into strong healthy adiquite compensating ones. Good luck buddy. I will pray for you because God does love you every bit as much as he loves me.

Yes, I'm older now, but was 28 when this problem started. It took me out of competing as a professional -- when I was 29. Age isn't the issue. The issue is that it does not fix itself. It took me 25 years to get diagnosed. In that 25 years, it got considerably worse, in spite of all the collateral blood flow that developed, until I could barely walk around the block. Like little red said, let us know when it's fixed itself enough that your post-exercise ABIs, not resting ABIs, are in the 1.0 range. Good luck!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Little red, I'm not falling for that. Yeah you can say that and fancy yourself right but the truth is, is that if my abi was .56 and is .79 and continues to get better then to me, that's fixing itself. When I'm at 1 I'll let you know. Just because surgery is a quick solution I'm not buying into it the life of the graft is maybe 10 years then you have to go in for another I'm not doing that surgery 4 times in my life. I have full mobility in it and should only get better, I'm more active then most people I know and 4.36 watts per kilo was always the best I could do, if I had surgery would I improve those numbers , answer is yes but I'm not a pro where my income depends on it. I'm happy with what I'm able to do. I'm happy not being part of the cycling community anymore as well, you guys are truly just a bunch of downers. Sorry but not sorry.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
All of you are old angry road cyclist, you didn't have to say it, it shows in your posts.
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Nope, I'm not a downer at all nor am I old. I had surgery for my IAE and have had zero problems since. Since surgery I've completed 6 Ironmans, 2 trail 50K ultra marathons, and tons of various distance triathlons, road and trail running races, and cycling races. I'm quite happy being able to do what I love with no limitations.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Grats!!
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
HeidiC wrote:
Well, I guess God just doesn't love me as much as he loves you. I gave up cycling and running and grew all sorts of collateral arteries. And, yet, I ended up with both iliac arteries blocked, exercise ABIs below .3, and barely able to walk. Resting ABI is rarely the issue; itís the exercise ABI thatís important, assuming you would like to do even some basic exercise (say, walk) -- even at my worst, my resting ABIs were the same as yours. All that spaghetti-like crap in the picture below is collateral blood flow, the "fixed itself bypass" you refer to. Didn't solve the problem.

The only reason I'm responding to this is because I know this thread turns up high in Google searches on iliac artery endofibrosis and I'd like others who read this to be well-informed. But like themadcyclist, I'd love to know the names of your vascular surgeons and their experience with this condition.


Nice post Heidi. Agree that this forum pulls in "internet researchers" for this condition. Bumping it up a bit ;-)
I'll let the Dr. Googlers read between the lines with the opinions on here ...

____________________________________
Fatigue is biochemical, not biomechanical.
- Andrew Coggan, PhD
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Ok, we are all dumb and angry cyclists who remorse not being able to recover from this on our own.
Now can you please tell us the names of your doctors so that we may also recover like you did?


Duathlete by choice?
http://parigari.blogspot.ca/
http://www.3sixty5cycling.com/ Ask me for a $50 discount on 3SIXTY5 Wheels!
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
I don't know what your intentions really are, so, no.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
I've been following this for a few years as I believed this is the problem I have. 8 years ago the docs did an angiogram of my calf and decided nothing could be done. This past summer my quad gave out and I quit running and cycling.

An ultra sound of the whole leg and ab showed a big blockage. The technician kept poking and prodding until she found it. My vascular surgeon has booked me for an angioplasty on Monday. He's going in through the groin and putting a stent in.

Based on all the posts here this doesn't feel like the right answer. I thought the ultrasound technician found the blockage higher up in the ab and not the groin.

My question - has anyone has success with this with a simple stent through the groin (he's going up into the right side and looping to the blockage on the left)? I think focusing on the calf 8 years ago was my fault - I drew their attention to that area so I'm going to let him go in and do the procedure but I'm thinking a rebuild it probably what's required.

This has been an extremely good reference for me as there wasn't much info on the net. I quoted it to my doctor but as you can imagine that didn't go over well!

Wanda
 
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
 
No, from what I was told a stent will not be a long term fix for an athlete. I would recommend finding a vascular surgeon who is familiar with this condition in athletes. I don't know where you are located, but Dr. Cherry at UVA is who I went too and has been the leading doc for this condition amount athletes for a very long time.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
And not to burst your bubble but you are old, (saw your tweeter:/) sorry. I'm 30 and that's getting a bit old for the body to heal itself, but it's all good. I'm glad surgery is going great for you and gave you the ability to do what you love!!!
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
DUDE - you really have no idea what you are talking about.

Some of the athletes Dr. Cherry has worked with who have been diagnosed with this condition are MUCH younger than you are.
They did not magically grow bypass arteries but needed surgery to correct the problem to restore adequate blood flow to their working muscles.

If your claims are correct, it would do you NO HARM to identify the doctors who have helped you address your condition.
Indeed, if your heart is in the right place, you should identify who you worked with as it would help others dealing with this condition because any one who happens on this thread like you did now has an actual medical doctor and can now seek actual medical advice from that doctor.

Right now, you just seem to be the typical internet troll with unsubstantiated claims who won't disclose any research to support his claims or the doctors who treated him.

And yes, I have a very short fuse for people who offer incorrect, unsubstantiated medical advice.
 
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
 
Wanda - I second everything Little Red has said.

Find a vascular surgeon who has dealt with athletes who have this condition. If you are not near Charlottesville, VA (where Dr. Cherry is located), I would still recommend calling him - he will help you find a vascular surgeon in your area who can best advise you on how to correctly manage and diagnose your condition.

Your intuition is spot on - Stents are not a great idea for the groin area for an active person because of the risk of breaking, slipping, and further scarring of the arterial wall. There are some case studies where stents have failed in athletes as they are really not designed for an active individual.
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
 All that I was trying to do was give the original poster another prospective. read what I posted. if he stopped cycling and there was no blockage in an angiogram then it means that in a prone position the artery was fine as long as he wasn't doing 100rpms for over two hours a day, there is no doubt that he would be fine... furthermore, I said another option would be to change his position to take some of the pressure off the artery if he wanted to continue cycling. further furthermore like I said even for myself I would be a better cyclist if I did do the surgery but there are a lot of risks that come with the surgery. on top of that it would only have about a 10 year life depending on what the doctor saw I'm sure it varies but like any prosthetic and in that area durability will always be in question, life of the graph, bleeding risks, all of that, its not worth it to me. my dr did say he does expect to see me in the future 30-40 years down the line but ill take my mobility now and when im 70 decide if I want the surgery or not. I'm glad your on a short fuse, that's typical, I don't know what your true intents are, it sounds like you just want to call and harass the surgeons, so no way am I going to disclose their information to you knuckle heads! everyone is tough behind a keyboard, see how short your fuse is in person, buddy:/ I will no longer post anything to anybody who just wants to argue. I said my piece to the original poster and it was drowned out by a bunch of Dr Googles, if he chooses to use it or doesn't will be up to him:)
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
Yes, that's what I thought. But I'm in Canada - free heath care and all but ... I'm going to let him do the stent and then advocate for the right solutions if it fails. Again, with the exception of the latest poster, this has been the most informative conversation. I will encourage my doc to talk to Dr Cherry. So appreciative of all who have posted

Wanda
 
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
 
As others have said, they don't usually stent in the iliac artery in athletes because of the high rate of failure. Dr. Cherry responds very quickly to email; I imagine even more quickly if it comes from a fellow vascular surgeon. Try to convince your surgeon to email him, or email yourself. His email address isn't on his UVA webpage any more, but I think it's kjc5kh@virginia.edu. If that doesn't work, his UVA webpage is here.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Interesting that this topic just became refreshed as just this past week read the entire 8 pages. I am pretty sure that my issue is related. I contacted Dr Cherry, and he referred me to a surgeon that he works with in my area, Colorado, who has repaired many of these and has a detailed diagnostic approach. My concern is that my issue never goes away. My legs always hurt, and it gets significantly worse when cycling. I was told this is not typical. It has been going on 6 years now. Pain never goes away. If I sit too long my legs are worse, laying supine makes me worse, driving in a car makes me worse, hunched over my bike considerably worse, sitting more upright on the bike is not as bad as on my drops.

I am in the process of getting an appt with this local surgeon, but was able to communicate through email as I work for the same company, and he described the testing procedure for me. I am hoping this will finally give me some answers, though not sure I would undergo surgery until I learn more about the outcomes.
 
Re: Illiac Artery Endofibrosis - I've got it. [biker2035] [ In reply to ]
 
Sorry you are dealing with this. Your issue does sound different since you say you still have pain when not exercising. At least in my case, as soon as I stopped running or cycling the pain/tightness/numbness/constriction feelings would go away and I never had any symptoms at rest. Honestly, if you do find out you have IAE I would recommend the surgery. Just be sure it's done by an experienced surgeon with this condition in athletes, which it sounds like are doing to see. I had the surgery in 2009 and have been able to completely resume training and racing with none of the IAE symptoms again. I have zero regrets other than I wish I was diagnosed much earlier in the start of my symptoms and wish I could've had the surgery sooner. It gave me my life back in terms of being able to do the things I love to do. Sure, I could have given up running, cycling, and triathlon and been just fine without the surgery (as in this is not a life threatening condition), but for me that would not have been a very good quality of life. Good luck and I hope you are able to get a correct diagnosis and able to get your issue resolved!
 
Re: Illiac Artery Endofibrosis - I've got it. [biker2035] [ In reply to ]
 
In line with what little red said above, if you end up having IAE, think carefully about the surgery. There are definitely risks, but like I said a few times above, mine continued to deteriorate pretty significantly even without running or riding. It seems to me that it can't be good to have such limited blood flow to your lower extremities, even if you don't want to work out; poor peripheral blood flow is a huge issue for diabetics, so I'm not sure why it would be different for non-diabetics. I just put a major gouge in my leg mountain biking which got infected and turned into a huge deal -- what if something like that happened and I had limited blood flow to my leg?? Of course, without the surgery, I wouldn't have been on the mtn bike in the first place. :) But, anyway, something to think about while you're weighing risks/benefits.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Heidi and everyone else:

First of all thanks for sharing all this information. I've been following this thread for a while but staying quiet because my diagnosis wasn't sure.

It's amazing how serious this issue is, and yet it goes by undetected for an average of 5+ years! And also that when you google for opinions/experiences...This is one of the first pages that shows up.

Anyway...my story is similar. I started feeling weakness in my legs 3-4 years ago along with recovery and fatigue issues. For a long time...I played the same game: maybe I m training too much, maybe my bike fit isn't right, etc. Well...my first ABI test came in at 0.55 in the affected leg, and once a standard test was done...it came to 0.29. At rest everything is good with an ABI of 1.05ish.

Ultrasound revealed a 4-5cm portion of the EIA that has hardened up and wont expand during exercise....so....bingo.

My main question to all of you is just if you know of any doctors/surgeons that you recommend on the eastern Canada side. My doctor here calls me a mystery because I don't show symptoms while cycling...it happens mainly while running. During cycling...I can sort of warm up and make the symptoms go away, or easily deal with them unless Im already fatigued from a heavy training load (such as at the end of a 2-3 week build).

Also...apart from Heidi...whose symptoms kept getting worse without surgery even after you stopped exercising?
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
Blitz,
You may not be asking me and don't have to take into consideration what I'm about to say, so if that is the case you can stop reading this now.
when I initially went in I was only able to walk about 100 yards before I was dragging my foot. when I was on the table doing an angiogram My Dr. recognized that my iliac was pretty much 100% blocked but while consulting with 6 or so other surgeons decided that what was best for me was to stop everything send me home and put me on blood thinners with the idea that because of my age and health and the size of the compensating artery that I would eventually be fine. but still didn't understand that if I compensated so well why I could only walk but 100 yards, so he shot more dye in and saw that I had all three arteries blocked behind my knee and that is why I had almost no mobility. tried to remove them, couldn't, and opted for surgery "fix it all in one shot" I didn't want to have surgery and he didn't want to force me and told me the other option would be to go in threw my foot to free up the main artery behind my knee to give me mobility and go from there, or do a major surgery to free up all the arteries in my lower leg only, which caries less risk. I told him no, just the one is fine, so over the weekend he had consulted a very renowned surgeon who was going to assist him in the surgery and who was urging to do it and another surgeon who was urging to just clear out the clots (still by major surgery). because of this, he decided he was going to go in on the same side that the blockage was on so that he could clear all the lower arteries, he told me there was higher risk because of it but was confident he could do it because I was super lean. I believe it was his first time ever attempting such a thing, usually they go in through the opposite side but where my artery splits is very V shaped as opposed to a more U shape. anyways, he did it flawlessly clearing all arteries behind the knee.
here's where the surgeons were divided, the main one there believed that if I wanted full mobility with no imbalances surgery was my best option the other believed that because I had a "extremely well compensating collateral" the blood flow to my leg would be so extreme that I wouldn't be able to bare the pain that it would cause. so, something would also have to be done about that. Coupled with my attitude about not having surgery my primary surgeon said that we (the other surgeon and I) convinced him that removal of the clots was best for me, and also long term this meant maybe one surgery when I'm 65-70 rather than a new graph every 10 or so years. He was also very adamant about no cycling, rowing, grappling, palates things of the nature no matter what I chose, stenting it was never an option because he said (no matter if you fancy yourself athletic or not) its a very mobile area and without any exercise and just walking would give it a 1-2 year life. stents are for either much higher up or around the heart. flexing metal stents, period, shouldn't happen.
To the Point:
My concern with you is that with any type of ultrasound or angiograph, what may look like 3-4cm might be more like 7-12cm once they open you up and see where and how the artery actually moves in that groin buttocks area and the longer you've been cycling the more likely its been stretched and narrowed and the longer the prosthetic will have to be (maybe not but maybe so) the less life it'll have and need to be replaced. but I have only been getting better since getting out of the hospital and we are all confident it'll get better as long as I stay active. its really up to you if you want to continue to cycle. I swim now and can swim all day without any issues. like you I never felt it on the bike except for Vo2 days and race day when the race was hard. I remember once when a racer who took 2nd told me "how was that so easy for you" I told him " it wasn't! my left leg felt like it was going to explode". and I think it was running that kicked around the clots because the day before this all happened I went on a 5 mile run and hadn't ran in like a year so for a few days I thought it was just a bad crap from the run.

hope everything goes well for you and if you do have surgery good on you hope it allows you to do everything activity wise that you seek to do! I have a family that because of cycling 5-6 days a week 2-5 hours a day, I have put on the back burner for longer than I ever should have so now I focus on them! good luck to you!
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
Having issues cycling versus running may depend on exactly where the issue is in the artery and what the issue is. I had surgery for both my femoral and iliac artery and my issue was that the inguinal ligament compressed the artery during exercise and this caused a stretch in the artery that resulted in the damage in both areas. They released my inguinal ligament too so the compression is no longer a concern. Some people have this issue because their artery is too long and kinks. It isn't always the same thing. Also, I had symptoms both running and cycling but they were actually worse while running - but the symptoms were different with each. I wrote down the symptoms I had while cycling and the symptoms I had while running to give to my doctor to help figure out what was going on. With cycling I could still manage to ride, although not at nearly the same level, even though my leg would feel weak, but I would get some relief when coasting or getting sucked along in the draft on a group ride. With running it was like I had a blood pressure cuff around my calf and quad and I would just have to completely stop. When it got really bad right before my diagnosis my foot would go numb when I ran. Anyway, my point is that while it might be unusual I don't think it's unheard of for the issue to be worse running.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Thanks for your thoughts. I will ask my doctor about multiple compressions and the possibility of a ligament/muscle trampling the artery.
Last edited by: blitzkrieg: Feb 6, 16 21:57
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
So you're saying that the surgery you had....the surgeon went through the foot up to your knee to remove the clots there?

As I understand, there are no clots with EIA. Simply hardening of the artery. In your case, once the knee clots were removed, you were able to recover from the EIA hardening in your own by just riding tempo level ( I.e. as long as it didn't hurt bad)??
Last edited by: blitzkrieg: Feb 6, 16 22:00
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
My EIA is blocked but has been compensated for so that has gone untouched, while it was occluding it shot multiple clots down my leg. No, he thought if he were going to do an angioplasty he would most likely come up my foot and it would be a straight shot since he couldn't go through my right side up and over. But he would have only been able to unblock one artery that way so he entered in through the left side to do an angioplasty on the left side to get all the clots out. He said the only reason he attempted it was because I was very lean and it was virtually a straight shot, luckily it went great, a lot of it was because he is a great surgeon! Hope that helps. And yes, on the bike it takes an over threshold effort (vo2) for around 5-6 minutes to get the same effects that about a mile of hard paced running would do to deprive my leg of blood. But I don't ride anymore because I don't want to risk any further damage.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I've had this condition and very successful surgical repair. I blogged about it, here's the surgery post: http://www.cortthesport.com/...c-artery-repair.html

I've had several people contact me about the condition so decided to start a Facebook page about it if anyone has questions or wishes to discuss:

https://www.facebook.com/groups/463852263810595/


Please join!!


Many of us suffered for years without a diagnosis. It can end enjoyment of running, cycling, and other sports.

Cort the Sport | http://www.CortTheSport.com
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
Lets get rid of the elephant in the room - if you are healthy enough for sex - then all the rest is trivial in the scheme of life.
 
Re: Illiac Artery Endofibrosis - I've got it. [ou8acracker2] [ In reply to ]
 
Precisely
 
Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
 
how did the surgery go.

have you fully recovered.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
HeidiC wrote:
As others have said, they don't usually stent in the iliac artery in athletes because of the high rate of failure. Dr. Cherry responds very quickly to email; I imagine even more quickly if it comes from a fellow vascular surgeon. Try to convince your surgeon to email him, or email yourself. His email address isn't on his UVA webpage any more, but I think it's kjc5kh@virginia.edu. If that doesn't work, his UVA webpage is here.

Update: surgeon did an angioplasty - no stent. He found it surprisingly easy to get through the blockage, no disease.

The follow up ultra sound showed good blood pressure in my legs but the technician found a flap or bump. She and the radiologist figured this was the cause of the "sludge" build up. The surgeon said to leave it as is and to call him if the symptoms come back.

He reported that in a year or two a self-absorbing stent will be available which would suit an active person better than the current stent, which he thought would do more harm for an active person.

Hard to conclude if it worked as 7 months of inactivity has taken a toll! But I can feel the difference.

So no major surgery for now.

Thanks for all the info.

Wanda
 
Re: Illiac Artery Endofibrosis - Do I have it? [kenpet] [ In reply to ]
 
The surgery went as planned. I had the first surgery Aug 14 to repair a narrowing in my left illiac artery. I was in the hospital for 4 days after surgery. The worst part was reactions (Itching) to pain medicine and getting out of bed the first time. I went home to Chicago and 7 weeks later flew back to Cherry for a follow up. All looked good and I was given the clear to start pushing the intensity of training. I bounced back pretty well but then at a race I felt some strange things in my right leg and my gut told me that it was the same thing and I hadn't noticed it due to the severity in the left. Cherry looked through films and confirmed that I had severe kinking in the left iliac artery. I was CRUSHED mentally but decided to go back to VA and let him fix it before the end of the year because we had reached our max out of pocket. Back we went Dec 3rd. Recovery has been slower the second time simply because two open surgeries close together compounds. Now however I am coming off two very successful weeks of training. I've seen some FTP watts and fast 800s with no symptoms. I have electric shock feelings sometimes and weird sensations in my inguinal ligament on the left (he released them both) but Cherry is happy with my recovery. He even let me see a vascular doctor here for follow up. I will see him next fall for a year follow up. I think he likes to follow at a year to keep data. I CAN NOT speak highly enough about him, his staff, the UVA hospital...If you have this problem go to the best. He clearly knows what he is doing, he has a bedside manner that I believe is unseen among most surgeons and I honestly felt totally at ease in his care. I'm taking this year to have a little fun with competition and let my body guide me more than my coach or the numbers on my watch but I feel very strong and so extremely happy when I step out the front door for a run with no pain, it's awesome.
 
Re: Illiac Artery Endofibrosis - I've got it. [davetallo] [ In reply to ]
 
Hey

Just following up on your post after some time here...did you manage to find a surgeon in the GTA area for this? I also went to a vascular surgeon at Toronto General...and he also had the same opinion.

In fact, I get most of my claudication while running...I can sort of manage it whenever it comes on while cycling. My surgeon actually told me to keep running (to avoid making this problem worse by just becoming sedantary) and give up cycling instead.

Let me know. Thanks!


Duathlete by choice?
http://parigari.blogspot.ca/
http://www.3sixty5cycling.com/ Ask me for a $50 discount on 3SIXTY5 Wheels!
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Heidi, was that laying straight or was that in the bent/aero position? If it was in the areo position can you tell me how they did the scan? They didn't know how to do mine so I basically kneeled on the bed and they put a foam pillow under my arms so I could sort of copy my position in the drops (since I ride stock).

Also curious about other folks who had the ABI done; in my case I got off the trainer, took off my shoes and socks, laid down on the bed and then they put the cuffs on my ankles and took the after exercise ABI. Is that how it was done for you guys?

I went through PT but every time I get back on a bike (trainer, fat bike, cyclocross bike, etc) and do any kind of effort (less than 30 seconds of effort) it aggravates and I'm right back where I was at.

Someone suggested just giving up the bikes. I tried that and am unable to run, which is very frustrating considering my artery is supposed to be patent when my leg is straight. However, the tests when it was straight were with normal blood flow. If there is scarring or hardening (which is not showing up on the CT scan), wouldn't the added demand from running create the same issue to a lessor degree even when my leg is straight?

Decided to get a second opinion on the surgery and am working on an appointment with Dr. Cherry (getting him the records). I just feel with a surgery this invasive that a second opinion is important. I'm also curious as to whether or not I might be catching it early (as no scarring shows up) and maybe it would be less invasive because of that.

Let me know how you all had your ABI tests done, and if you had a CT in the aero position, how did they do that? Thanks!
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
I didn't have a CT in the aero position. Mine had been blocked so long that it was obvious just lying flat. It sounds like your ABI was done similarly to mine, assuming they used the cuff and Doppler to pick up the sound. Did they take you up to a high level of exertion before they took the post-exercise measurement? That's critical, and it's also critical that they take it very quickly after you finish. If there was a delay, your pressure could normalize pretty quickly.

Running was always far worse for me than cycling, for whatever reason. My calves would completely cramp up and my legs would feel like tree stumps. I could ride some (albeit slowly) after the onset of my endofibrosis, but I could not run at all.

You're making the right decision to consult with/see Dr. Cherry. That's really the best thing you can do. He is the U.S. expert on this. Good luck!
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
I couldn't really get max exertion-was having trouble catching my breath (had been having unrelated lung issues with bronchitis/pneumonia early 2015 and then bronchitis again November-the ABI was in July). I'm not sure what qualifies as "quick" :) It definitely took at least a couple of minutes to get off the bike, shoes/socks off, up on bed and cuffs on! It actually wasn't bad-it dropped but only to .79 or something like that (going from memory). But was in both ankles and I only have kinking in my right. Bower never explained why I would have decreased blood pressure after exercise in both ankles if only the right is kinked.

Yes, exactly-I can't run because my calves are so tight no matter how much I stretch and my calves & feet cramp all the time. It is super frustrating & sometimes I get so pissed when they cramp just trying to wear 3" blocky heels for work (which is pretty infrequent now because my calves are too tight). I'm also getting hamstring cramps now & then, but nothing consistent and not while running/riding.

Well, maybe I am catching it early and maybe there are some less invasive procedures (like just releasing the artery without shortening it to see if that opens it enough to run? Don't know if it absolutely has to be shortened if I'm willing to give up the bike for running).

Ok, thanks for the info.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Hi Lynne

My ABI and Ultrasound testing were undertaken at the medical diagnostic centre in Brisbane.
I took my windtrainer and bike in.
10 minutes warm up.
10 minutes hard effort. Significant pain.
Ultrasounding was undertaken during the hard effort ( not easily)
After effort lay on bed.
ABI's and ultrasounding was carried out with legs in straight position for 10 minutes. Both Legs.

My ABI's as tested were 0.35 left and 0.38 right. It took around 10 minutes post exercise for the ABI's to even.
EIAE both legs confirmed.
I was surprised because I always thought it was only my left leg as the pain was never as intense on the right side.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Completely forgot to post; had planned to get a 2nd opinion with Dr. Cherry in VA because it just didn't make sense to me to do a significant surgery if there was no chance of improvement on my left side. Ended up not have to go there because Dr. Cherry was able to tell me from the imaging that I don't have classic EIAE. Instead artery on both sides is being severely compressed by the inguinal ligaments. Explained why my left foot feels cold/numb and like I can't control it on a ride or run and also why both thighs feel "light headed". Meeting with Dr. Sullivan on 4/27 to discuss procedure and definitely want to get on the surgery schedule asap. Seems this should be much less invasive and maybe quicker recovery. Feeling very lucky if I'm understanding everything correctly.

Haven't been online much past couple weeks as I tore my meniscus (and have some other damage/issue in the knee) trying to run instead of riding. Fortunately non-operative and it sounds like it shouldn't compromise ability to have the inguinal ligament release. Body and mind have aged a decade since I stopped being able to hit it hard a year or two ago!
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
Eileen, I'm also in the Sacramento area and I had my ABIs (post-exercise: .72 left, .22 right) and CT angiogram done at UC Davis. It's 2 months before the UC Davis surgeon can even meet with me to discuss the scans, and since I'd prefer to have the surgery done by someone with experience, I asked my doctor to refer me to Dr Lee at Standord, but I haven't heard back yet.
Your post, particularly your ab complications, make me concerned about Dr Lee. What was your opinion of him? Did he seem knowledgable and experienced with this type of surgery? Is there more to the abdominal complication than how he performed the surgery?

Has anyone else gone to Dr Jason Lee and is willing to share their experience?
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
I hesitate to say anything because I have no personal experience with Dr. Lee, but the doctor who did my surgery re-did a surgery that Dr. Lee had done in which Dr. Lee hadn't gone far enough past the diseased part of the artery. But my surgeon also referred someone to Dr. Lee who needed to have a full-on bypass (which didn't work, btw, but probably for reasons unrelated to the surgery), and I would hope he wouldn't have made the referral if he had doubts about Dr. Lee's ability. So that's a little bit of a non-answer.
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
Definitely don't waste your time with UC Davis. I had the head of vascular surgery at Davis review my CT angiogram, tell me it was normal (it wasn't), and then tell me he doesn't operate on healthy people. I understand why he said what he did, but it devastated me at the time, because I thought I had no other options, no hope of specifically diagnosing what was wrong, and no hope of getting it fixed. When I found out about Dr. Lee, I was overjoyed, because he gave me hope.

My opinion of Dr. Lee has to be split into Dr. Lee and the Stanford Vascular Clinic. I like Dr. Lee. No, he doesn't have great bedside manner, but he's a surgeon; they're not known as terribly sensitive people. Yes, I did develop a short-term complication (I had a terrible allergic reaction to the stuff they used to disinfect the area pre-surgery and to the steri-strips he used to help close the incision, which caused a lot of blistering and indescribably bad itching) and a long-term complication (the abdominal bulge caused by denervation of my abdominal muscles), but the short-term complication couldn't have been anticipated, and the long-term complication can be avoided if you ask him to do a single longitudinal incision rather than the transverse one he did on me. He is experienced in doing these types of surgeries, and he is a very competent surgeon. He was also quite comfortable consulting about my case with some French colleagues who had seen and worked on more cases then he had at the time he did my surgery, which impressed me.

The Stanford Vascular Clinic is HORRIBLE, or at least it was in 2011, 2012, and 2013. The people who staff it are rude, they cancel appointments at the last minute (which is a costly problem if you do what I did and book a room in Palo Alto the night before given the early morning appointments they insisted on sticking me with), they fail to effectively communicate with Dr. Lee (not once, not twice, but three times, I was asked to come down for ABI tests and given incorrect instructions on whether to bring a bike -- I'd either bring one when I didn't need to or not bring one when I did need to; one time they scheduled me for an appointment on a day they had no one working to perform the ABI test, and another time they scheduled me for an appointment on a day Dr. Lee wasn't scheduled to be there), and they were completely nonresponsive and unhelpful when I asked for help identifying the substances to which I'd been exposed in the operating room, so I could work with an allergist in Sacramento to try and figure out what had caused the horrible allergic reaction. I would advise you to avoid Stanford, not because of Dr. Lee, but because of them. I've had other surgeries since my vascular one (yes, lucky me), and been blown away by the difference between the courteous and professional service I've been given elsewhere, compared to the horrible treatment I repeatedly received at Stanford.

That said, the last time I dealt with the Vascular Clinic was 2013, when I finally gave up. You could always call down there and try to make an appointment with Dr. Lee. If your call is returned within 48 hours and the people you speak to are courteous, they may have cleaned up their act.
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
Thank you Heidi and Eileen.
I have an appointment to do a bike test and see Dr Lee in 2 weeks (he wants me to redo it there even though I did it at UCD). They seemed prompt and organized, so hopefully that means the vascular center has improved. If not, I'll consider trying to go to Dr Cherry in Virginia instead.
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
Dr Cherry's the bomb. Had it both sides. He fixed them both at the same time and am now running and riding faster that ever. Had surgery last July and back at triathlon fully recovered within 6 months. I wouldn't go to anyone but him.
 
Re: Illiac Artery Endofibrosis - I've got it. [Rhonda] [ In reply to ]
 
Hi Rhonda

Great to here it all went well for you. Did you travel from interstate to see Dr Cherry. How long was your hospital stay.
I am seriously thinking of travelling to the US to see Dr Cherry.
Had my first ride for over two years on the weekend. Hurt like hell all the way but really enjoyed being out again on a bike.
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
hello
I was really happy to read through the thread and discover other people who have been through the same problem I have. I had the surgery on my left external iliac 4 weeks ago and am looking for advice on how to best return to the bike. My surgeon warned me it takes at least 3-4 weeks for the endothelium to heal, so no exercise at all for that time. After that I should "take it easy" for 3 months.
I have been working with my physio to keep my back and legs in decent shape, and my coach gave me a progressive bike schedule. it starts with 20 minutes every second day and gradually builds over 2 months, all easy, no hills or sprints. Has anyone else had any return to biking advice?
 
Re: Illiac Artery Endofibrosis - I've got it. [eileenb] [ In reply to ]
 
I would give it more than 3-4 weeks to heal. I did A LOT of walking for the first few weeks and then was in the pool maybe 3-4 weeks post surgery (with a buoy and easy). I think it was around 8 weeks until I was back on the bike. You definitely want to be cautious with your return to the bike.



https://twitter.com/mungub
http://benmunguia.blogspot.com
 
Re: Illiac Artery Endofibrosis - I've got it. [eileenb] [ In reply to ]
 
I agree to more than 4 weeks. My doc said trainer only at 6 weeks and add light jogging and going outside on the bike at about 8 weeks. Still all VERY EZ though. About 3 months out I felt good. About 6 months out I returned to everything with no limitations. Don't rush it.
 
Re: Illiac Artery Endofibrosis - I've got it. [70.34me] [ In reply to ]
 
Bumping this up to see if anyone has had successful experience in talking/surgery with this condition in the GTA area. Any hope out there for me?


Duathlete by choice?
http://parigari.blogspot.ca/
http://www.3sixty5cycling.com/ Ask me for a $50 discount on 3SIXTY5 Wheels!
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
I'm not in that area but have had the surgery. Feel free to ask/pm me in questions you have. Hang in there. I feel for you.



https://twitter.com/mungub
http://benmunguia.blogspot.com
 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
(Sorry I can't figure out how to post without replying to someone!)

I know this thread has gotten very old, but hoping to get some feedback on post surgery experience.

I had surgery 10/25. I was very early stage, so no scarring, arteries were beautifully intact (for which I am immensely grateful). However, the inguinal ligaments on both left and right were quite tight which effectively caused the same problem that a kink would cause in that it partially obstructed blood flow bilaterally when bent forward as you would on the bike, to sort of simplify it.

All well and good-I had surgery to release the ligaments on both sides (fortunately able to do it in one surgery), and surgery went very well.

The question I have is about the subsequent scarring. The scar from entry on both sides is still very prominent and thick 8 weeks later, but not painful. However, the area where the ligament was released a bit more toward the center of my body and deeper also has thick scars that I can feel. To keep this somewhat short, the scars are causing pinching pain while riding and aching for quite a while after the workout. I knew going in that scars can be a complication, and I am ok with that. But am wondering if other folks had thick scars and also if they were causing pain as you began to train again?

It may be that no one can answer this as obviously I didn't have a graft so the recovery was much shorter and less complex, so I'm starting training again pretty quickly. Although it's only been a two weeks since I was released to train, I was able to do rides two days in a row this week with climbing (using a smart trainer in Zwift, so it simulates the climbs very realistically) and was still able to go up the stairs from the basement even the second day, which was not the case at all before the surgery. The only reason I didn't do a third day with climbing was because my knee had some issues (tore the meniscus in March, had surgery to repair it in July and it's not fully healed until the end of January), not because I couldn't make my legs move and not because they were burning. Based on heart rate, even with a lack of fitness they were both good workouts, but maybe since I've been sort of couch bound since March I'm not fit enough to know if the pre-surgery problems have resolved with the release. Little afraid to get my hopes up too high!

Anyway, hoping maybe someone has some experience with painful scars and possible it resolves the further you are out from the surgery? Maybe this is just something everyone has when you have surgery in that area and are hopping on a bike. Thanks.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
I remember feeling like I was going to bust the incision site open if I stretched too much. The scar is a funny thing and it definitely leaves some phantom pain for the first several months. I was afraid to stretch out, thinking it would rip the scar. Don't worry. It will get better, and I think it's normal to feel some pain around that area.

Take it easy. Seriously. Go way slower and be way more cautious than you think. It's not worth messing up.



https://twitter.com/mungub
http://benmunguia.blogspot.com
 
Re: Illiac Artery Endofibrosis - I've got it. [mungub50] [ In reply to ]
 
Ah. I figured the 6 weeks of no activity was for the scar to 100% heal. I know to use pain as a guide, but I also know that there are some things that are just going to hurt and you aren't going to make it worse if you push through. Just can't decide if the scars are one of those things you learn to live with. Thanks.
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
You will want to be sure you don't develope a lot of scar tissue in that area. Do a lot of massage, ART, etc. to soften the scar and break up/prevent scar tissue from forming. It might be uncomfortable initially, but you really want to keep the tissue mobile. By 8 weeks post surgery you should fine to at least be starting with some gentle cross friction massage.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
I was able to do that with my knee, but we started within a week of that surgery so I thought it was too late. I will definitely do that now! The only issue I see is that I can't get to the scars inside, just the scars from the entry which are in a slightly different location (more toward my heart whereas the scars inside are more toward my groin. I feel them when they ache and I can press down and feel the hardened areas). No clue how you deal with internal scars you can't massage. (I'd ask all of this of the surgeon, but I just had one follow up not long after surgery and you don't make follow ups to figure out how to progress on training!). Also, with this surgery there was no PT at all (I had months and months of PT for the knee).
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
hannahw - Did you have your surgery with Dr. lee at Stanford? I am seeing him next month for an ABI test. I wondered how your surgery and recovery went and what your opinion is of dr. lee. Thanks for any feedback.
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
Hi Michele, I'll give you a brief overview of my whole experience with Dr Lee and Stanford. Overall, I'd do the surgery again, but somewhere else with someone else.
Office: The office was pretty disorganized and frustrating. Someone else said this earlier, and I hoped that the office would have improved, but they haven't. Stuff like not telling me whether I need my bike (you don't for the ABI--they want you to use the stationary bike), changing my appointment time so that I needed to get a hotel in order to make it, giving me inaccurate post-surgery recovery information, not calling me to schedule an appointment they were supposed to, changing the time of my surgery the day before, and not bothering to tell me that Dr Lee wasn't around the day of my appointment. I was literally in tears of frustration at my most recent visit. At my first visit, Dr Lee seemed informed, competent, and reassuring, which is why I had the surgery with him.
ABI test: They're going to put you on a stationary bike and increment the resistance a 1/4 turn every 3 minutes. If you're like me and your symptoms peak when you do high-intensity efforts, this is ineffective, because you can't reach that peak with such a slow ramp. I talked them into letting me ramp it to full intensity once I started feeling leg sluggishness.
Surgery & Hospital: The anesthesiologists and nurses in the hospital were excellent. Surgery could have been better explained to me in advance. You will wake up with a catheter and will not be able to leave the bed until the next day--neither of these things were told to me in advance. The day after your surgery, start asking to leave immediately--it took them 4+ hours to round up the approvals for me to leave.
Recovery: Recovery was actually way better than my expectations, but I am 27 now and was 26 then. The only prescription pain meds I took was what they gave me in the hospital, and then it was just minimal over the counter stuff after that. I took a week off work and it took about that long to be able to walk around easily, but I still got tired quickly. After 6 or 7 weeks, I started cycling again (per Dr Lee's approval). It didn't work to let pain be my guide at that point, because I couldn't feel any pain from the surgery. So I just ramped up slowly.
Relapse and Angioplasty: After 4 or 5 more weeks, I started having symptoms again. I went back for an ABI and CT scan at the end of December. My ABI was .3-something in my right leg again, and when Dr Lee called me (because he missed my appointment), he said that my CT scan showed a much smaller narrowed segment below where the previous portion was, and under my inguinal ligament. He recommended a balloon angioplasty, which he said was appropriate because this narrowed section was shorter than the last one, there would be too much scar tissue for open surgery again this soon, and it was a super-minimal "15-minute" surgery that would likely provide relief for me. I scheduled the surgery for a week later, which was literally before they could send me a copy of my CT scan. After I had the angioplasty (*not* a 15-minute surgery or even close), I got my CT scan report and read that the main conclusion was that I had a new arterial dissection (tear in the wall). Dr Lee never mentioned the dissection--he made it sound like more of the endofibrosis. It also is of similar length as before, not significantly shorter like he said. Ultimately I felt like he either lied to me, or was seriously forgetful about my case when communicating. I'm very upset with the angioplasty for my dissection, because I would not have agreed to that as a treatment. I requested a full copy of my medical files and now I'm looking into getting a second opinion somewhere else.

I'd be happy to tell you anything more, or give you my email if you want to communicate privately. Don't give up! There is a solution out there to get your leg fixed up =)
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
I have no direct experience with Dr. Lee, but I know the surgeon who did mine corrected an endofibrosis surgery that Dr. Lee did and which failed a couple of years later. I'm not sure that can be blamed on Dr. Lee, but this person felt his second surgical experience was a vast improvement over his first.
 
Re: Illiac Artery Endofibrosis - I've got it. [hannahw] [ In reply to ]
 
Hi Hannah- thanks so much for the through explanation.I'm sorry to hear about the complication. A tear in the wall of the dissection sounds like it is serious. Will you need the procedure re-done?I was hoping that Stanford might be more organized by now. Setting the initial appointment seemed pretty seemless, but I guess that is no indication of the more important processes to come. I will keep my appointment to get a confirmation of IAE or not, but your post makes me re-think Dr. Lee. I've already gotten the run around by my orthos, so I may look around for other doctors experienced with IAE on the West Coast. I'm in the SF Bay Area, sounds like you might be close by here. Will you go back to UCD for the second opinion? I don't know how many of these surgeries a dr has to do per year to become compentent though. My email is michele@mm-estateplanning.com - i looked for your email address in your profile but didn't see one.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Heidi- Thanks for that input on Dr. Lee. I will go back in this thread to get the name of your surgeon. I also emailed Dr. Cherry to see if he had any recommendations. Thank you so much!
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
My surgeon, Christian de Virgilio, has unfortunately stopped doing these surgeries. He's the Director of the General Surgery Residency for Harbor-UCLA, which keeps him pretty busy, and Harbor-UCLA isn't really set up to take private pay patients (it's an L.A. County hospital; mostly MediCal). When he stopped, he referred me for follow-up to David Rigberg at UCLA. I've only seen him once, but he seemed to have a good handle on the iliac artery endofibrosis stuff and seems to be well-respected by his peers. I can't really speak to his surgical skills though. I would see who Dr. Cherry refers you to. Let us know what he says, although I have a feeling it might be Dr. Lee.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Heidi - Taking Dr. Lee out of the equation, Dr. Cherry recommended your doctor, de Virgilio, for the west coast. He hadn't heard of Dr. Rigberg, which doesn't mean that Dr. Rigberg is not every bit as compentent as Dr. de Virgilio. Not being enthused with what I'm reading about Dr. Lee's outcomes, I scheduled surgery with Dr. Cherry in VA on April 6th even though I'm in CA.
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
Going to Dr. Cherry seems like a great idea. I have a hunch your lack of enthusiasm for Dr. Lee is well-founded. It's definitely a bummer that Dr. de Virgilio had to stop doing private insurance work. Dr. Cherry referred me to him (Dr. de Virgilio had interned under him at Mayo Clinic); Dr. de is really a great surgeon and also a great guy. But, given his absence, Dr. Cherry is the way to go. Good luck! Let us know how it goes.

BTW, did you have your ABI?
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
My ABI with Dr. Lee is March 14th. Dr Cherry asked me questions before saying that it sounded like IAE and set the surgery date based upon that. It's been a 2 month wait for that 14th ABI date, so I'm keeping it as a confirm before I travel. But wow, what a difference in procedures!
 
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
 
Hi Wanda.

I was just wondering if you ever located any surgeons in Canada that use Dr. Cherry's technique.

S.B.R.
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
And, Michele, I was wondering how things turned out for you. Hope it went well!
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Hi HeidiC - I had the surgery by Dr Cherry on April 6th. I had endofibrosis in the common iliac as well as the external all the way to the femoral artery. I had two incisions to replace those arteries, probably about 10-12" in total cuts. I'm 6 weeks post op and followed up with Dr Lee at Stanford last week to avoid the logistics of the cross country plane flight. I was surprised that the EIAE was so pervasive. Dr Cherry's angio showed EIAE in the other leg as well, but hoping to delay that surgery as much as possible. I hope you are doing well from not only the EIAE but your other injuries from the car impact.
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
My symptoms that I couldn't control my left leg/weakness/impending cramp started 5 years ago with running and have worsened to the point where I can't run anymore. I transitioned to mountain biking & XC skiing, but am starting to experience some symptoms with biking now. I also feel them with walking and my leg will sometimes tingle at rest. Finally, after 5 years, a CT scan earlier this month revealed IAE (actually on both sides, though I only have symptoms with left leg). I was elated after all the wasted time and money on chasing a diagnosis. My Dr wanted an ABI as a follow up test because my 2 priors had been normal, but with those I didn't exercise until the symptoms were intolerable. I did that today and the US ABI was normal (I believe 1.4 post exercise and 1.17 at rest). Now the Dr says my IAE was an incidental finding and NOT the cause of my symptoms because the thickening isn't impeding blood flow. I am devestated. Now he's making me do an US for venous insufficiency (of which I have no symptoms of) and an echocardiogram. I just find it too coincidental that I experience nearly all the symptoms that everyone here has, a CT scan SHOWS the condition (the Dr even showed me on the imaging how you can tell the thickening), but my stupid ABI is normal and now sending the Dr off that path. I obviously don't want a surgery that won't correct my symptoms but every other test under the sun has been normal! Has anyone experienced anything similar? Suggestions? I am thinking I'll send my records to Dr. Cherry once I have them for another opinion (not sure if waiting for my subsequent tests would be useful).
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
Mel Hauschildt has recently had surgery for an iliac artery kink. Been giving her issues for a couple of years.
She initially thought it was just cramp but it really was no blood flow to quad

Andrew Garwood
http://www.2xu.com
http://www.newtonrunning.com
http://www.ascendsport.com.au
 
Re: Illiac Artery Endofibrosis - I've got it. [MicheleM] [ In reply to ]
 
Thanks for the update, MIchele, and sorry about my delay in responding. I'm glad you were able to get to Dr. Cherry for your surgery. I hope your recovery goes well and that your leg is back to full function soon -- and also that you are able to delay surgery on the other leg. I find it so interesting that some of us have this in both legs and some only one. It make me wonder if there are different etiologies. Well, I'm sure there are, but I wish the medical community knew more about it. Thanks for the well wishes!!
 
Re: Illiac Artery Endofibrosis - I've got it. [hollyanne99] [ In reply to ]
 
I'm sorry you are having such a hard time getting a diagnosis. Are you seeing a doctor who is familiar with this condition? How was your ABI done? Were you on a bike, or at least a treadmill, for the exercise portion of the ABI? The protocol they use for ABI determination in the diagnosis of peripheral artery disease is much different than what should be used in athletes with symptoms of IAE. The standard ABI is not sensitive enough to pick up issues in well-trained athletes because the exercise portion isn't rigorous enough. I would shoot Dr. Cherry an email (email address is somewhere above) with whatever records you have, or even without any records, and get his opinion. He may also be able to give you a referral to someone in your area who is knowledgeable about IAE.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Thanks for the response, Heidi. My ABI did have me run as fast & as far as I could, to get my symptoms as bad as I could tolerate, so it was done correctly. My symptoms are worst with running. I did call Dr. Cherry's office and will be sending my info to him for review. Knowing he's the expert and would know if it's possible to have the condition with ABIs reading normal gives me some sort of relief that it's not over yet. I also want him to see the imaging. He will know of those he repaired, who it worked for, and potentially if I look similar or not. If he says it is not the cause of my symptoms, I suppose I will have to accept and believe that and continue searching for an answer elsewhere.
 
Re: Illiac Artery Endofibrosis - I've got it. [hollyanne99] [ In reply to ]
 
I've had a few people contact me asking about my status.

Tests confirmed that my inguinal ligaments bilaterally were causing compression on the femoral arteries, leading to reduced circulation (reduced by 30% on one side and 40% on the other, I believe). I underwent bilateral ligament release in October of last year. It was confirmed during surgery that I was essentially pre-IAE as the ligaments on both sides were tight with very little space between the ligament and the artery (if I understand correctly, the higher the need for increased circulation, the more the femoral artery expands and the more the ligament compresses and restricts circulation during exercise). I did NOT have any scarring and did not need any grafting on either artery (and it impacted circulation closer to the hip as it was above the iliac junction-I think).

I had tried to substitute running for biking in 2016, thinking to maybe avoid surgery and change sports. I was provided arch support inserts that were too extreme and in March of 2016 on the inaugural run I suffered a meniscus tear. Several months later about a 1" chunk of cartilage broke free and imbedded in the back of my knee and showed up on follow up MRI. Surgery in July of 2016 to remove the cartilage and trim the meniscus revealed a large tear that had also detached on one side, instead of the small tear that was anticipated. It did not appear on the scan as it had folded over on itself. The surgeon performed a repair which is essentially the same type of recovery as a knee replacement.

As of this date I have been unable to recover from the arthritis in my knee (surgeon believes the repair was successful, but that the cartilage broke free at the time of the tear due to existing arthritis; cartilage tissue cannot regenerate or be replaced or repaired). Without going on and on, my knee is quite painful with weight bearing activity.

I went ahead with the release in October as the surgeon thought I would fully recover from the tear and cartilage damage. Until recently pain in my knee prevented me from trying to train other than spinning on a trainer with little to no resistance. In March of this year I had a steroid injection which temporarily relieved pain, swelling and a fluid pocket.

Unfortunately a week and a half ago my symptoms returned exactly as they were prior to the ligament release, with the additional problem that the steroid injection only lasted about a month or so.

I'm devastated as my activity level is sedentary now. I'm extremely depressed and not dealing well with the situation. I figured I should post so folks don't contact me as it tends to make it more difficult for me to deal with. Thanks for your understanding.