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Illiac Artery Endofibrosis - I've got it.
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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
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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.

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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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!
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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.
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Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
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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! :)
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Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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.
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Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
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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.
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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...

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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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!
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Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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?
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Re: Illiac Artery Endofibrosis - I've got it. [Mannick] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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?
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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.
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Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
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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.
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Re: Illiac Artery Endofibrosis - I've got it. [pmingo] [ In reply to ]
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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!
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Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
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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!
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Re: Illiac Artery Endofibrosis - I've got it. [pmingo] [ In reply to ]
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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
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Re: Illiac Artery Endofibrosis - I've got it. [Ex-cyclist] [ In reply to ]
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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.
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