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:
My V02 Max is 50. I’ll never be able to go out and crush peoples souls even when I’m at 100%.
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.
Even after the surgery, there’s no assurance that the problem won’t come back.
I’m 41 and my days of racing would be numbered anyway.
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).
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.
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.
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.
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!
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.
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!
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.
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.
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.
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…
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!
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.
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?
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?
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 don’t 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 don’t 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
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.
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.
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.