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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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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.
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.
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.
Cycling coach, Elite racer on Wooster Bikewerks p/b Wootown Bagels
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.
The decision is difficult and is always on my mind.
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.
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.
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!
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.
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.
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.
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.