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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.

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.

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.....


"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.

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 haven’t 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 doesn’t 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

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