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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.

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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.

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."


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.

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.


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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 ]

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

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