I’m looking for anyone who knows of a vascular surgeon familiar with this condition, or any cyclists who have had this problem. I had to quit racing/riding due to my left thigh ischemia, at the time(1989) it was an unrecognized condition, with the exception of Chevalier, who had treated seven pro cyclist in france. Since then many other cyclists have been diagnosed/treated but I need help finding a Dr. in the U.S. that can handle this. I’m in So cal. Does anyone know any other riders who have been treated? T.R.
Have you been put on Pletal (or Trental) as well? Any vascular surgeon could theoretically “handle” this since the external iliac artery (I’ll assume) is a common area for bypass anyway (albeit in much older smokers, diabetics, etc.!) I would be curious if any of the vascular surgeons are performing endovascular procedures to reduce the fibrous stenosis (i.e. Silverhawk, waterjet, etc.). That would be MUCH less invasive and greatly reduce the risk of complications (which include death from internal bleeding post-surgery). I round with the vascular team at UC 2/month on LE difficult limb salvage cases, and I’ll ask the 3 main academics there (all trained back east at Harvard/Mass General/Yale).
Good Luck!
I thought any vascular surgeon might be able to help and consulted with a Dr. in socal. He had a hard time taking me seriously. Of course all his patients were older with the cause of stenosis being atheromatous, etc. and not from exercise enduced trauma. I don’t think he saw too many 28 year old patients with five percent body fat and a resting heart rate of 36 bpm. My hope is now that the condition is much more recognized I’ll have a little better luck. The Dr. that wrote the first paper on the condition back in 1987 has since treated over three hundred patients, and the majority of them had arterial resection with venous graft. Histological studies have shown not only intimal thickening but medial and adventitial thickening as well (thought to be due to smooth muscle hyperplasia) I am aware there are risks, but not how often they are encountered. I do know that one professional cyclist treated at the clinic in France recently died due to graft failure. (Ryan Cox, team Barloworld) Because of my desire to return to a compettive level I am willing to accept the risks.
While I wouldn’t know who to refer you to, I hope you the best on your recovery and your return to cycling.
Again, I’ll ask directly the several that I know - but I’ll likely get the deer in the headlights look as well.
Didn’t think about the adventitial thickening of the vessel wall in addition to intimal fibrosis - so that would probably rule out an endovascular approach. Likely a saphenous vein graft harvest/bypass only.
Are you connected in any way to the other recent endofibrosis thread, or is this just a coincidence?
As I said I would do in that thread, I asked our vascular surgeon (and former triathlete) about exercise induced arterial endofibrosis. He said he’d never heard of it. I hope that the smart guys Dr. Roof will be asking will be more helpful.
I did not post on the other endofibrosis thread but I found this site by googling the words endofibrosis and cycling. There was an earlier thread from a guy who had surgery recently however he was in europe I believe. I"m hoping someone from the other thread might notice this and be able to help with some sort of contact. Does anyone know who the current u.s. national team doctor is? Thanks, Tom R.
Yes, I wrote the earlier thread. I had surgery nov 3. Enderiarterectomy with vein patch angioplasty, I think it was called. In common language, they scraped away the thickened part of the intima layer and sew the vessel together with a vein patch, thus making it slightly larger in diameter than before. The surgeons hadn´t treated athletes before but plenty of “ordinary” patients who suffered from ischemia. So, I would conclude any blood vessel surgeon could do it. But in my case, he had studied the available literature thoroughly to decide on the best course of action.
So Marcus, hows the leg feeling so far? Hows the pain level after surgery? Do you think it could be done without pain meds? I’m guessing its still too soon to test it your threshold? So did you get whats known as “arterial resection” where they remove a section of the artery and butt the ends together? Seems that most who get this have a redundant or extra length of artery on the affected side which contributes to the kinking. The docs in France that have done a bunch of these usually take a section out as well as the endarterectomy (scraping the fibrous plaque/tissue from the inner wall) A few people I’ve found here in the states that have had the procedure did not have resection but had the artery cut open, scraped then patched. I’ve also heard of some having the inquinal ligament cut or released. Some docs think there is an entrapment contributing to the problem. I’m getting closer to finding a doc, there’s a hospital here on the west coast that has done atleast three cyclists. Thanks for your imput and hope your recovery goes well, T.R.
It feels…GREAT. I have tested it quite to the limits, the doc gave me green light after six weeks and of course I wanted to test it all out as soon as i could. Sometimes I get worried that my left feels more tired, but I think and hope that it´s mostly imagination and the fact that it´s weaker due to not being used for about one year. And yes, my left foot gets cold easier than my right, perhaps due to weaker peripheral circulation. That said, I have not experienced any symptoms - even att maximum effort. Which is, as you may imagine, heaven for me after not being able to exercise at all. I´m just hoping to keep up the good work.
They will perform a bike test, measuring oxygen saturation and ankle blood pressure in april. Nervous of course, but I´m optimistic.
What they did was to scrape off the tissue inside the artery, then release it from the muscle to prevent further kinking. Then they sew it together with a vein patch. The surgeons did not see it necessary in my case to shorten the artery.
I was walking around after a couple of days and really didn´t feel so much pain. I had epidural anesthesia for a couple of days during my stay at the hospital, but I could quit the meds quite soon after going home on day three after surgery. You could compare it to an appendix operation. I started making long walks on day four, and was allowed to do easy cycling and swimming after two weeks.
Good luck to you and all the best. Remembering the horrible pain, I wouldn´t want anyone to suffer from that, at least not an endurance athlete who depends on good blood circulation.
Thats great news, sounds as though your surgery was a success. I know for me it wouln’t take more than ten minutes on the bike to know if there was no longer a problem. Within ten minutes of any work at all my left leg feels full of lactic acid. I’d be so stoked to be able to race/go all out again. Your report is extremely encouraging. If you don’t mind I’d like to check out your pre surgical report of findings and surgical report. Or atleast an occasional report on how your recovery is going. My e-mail is towerfab@hotmail.com Tom R.
digging up this thread for you.
Spoke with 2 vascular surgeons while rounding with the vascular team this evening about this (since everyone was brain humping each other and pimping the poor residents/students/fellows anyway). One had no idea. The other (Yale guy) had some knowledge at least, even recalled some of the European cases, but no personal experience in repair.
Good luck on your search and or repair if you go down that road!
I just happened to see this thread and was just diagnosed with iliac artery endofibrosis last week. I don’t know if you’re still searching for a doctor or not. Are you sure this is what you have? I’m just asking because you need to have some specific tests that only a vascular lab would most likely have to confirm this since there are other things that can have similar symptoms. I had issues for 5 years that doctors failed to take seriously - soreness, tightness, weakness, and absolutely no power in my left leg. It would come on when the pace was really hard in cycling races and anywhere form 3-15 minutes into a run. It got to the point recently where I started to have numbness in my left foot and my toes would get painfully cold that I figured something was really wrong. My ortho narrowed it down to compartment syndrome (test negative), entrapped nerve, or entrapped artery. He referred me to a vascular surgeon here in Atlanta (where I live) who has treated runners with popliteal artery entrapment as well as cyclists with iliac artery endofibrosis. His name is Dr. Peter H’Doubler. It was pretty easy to confirm based on my post treadmill test blood pressure values. I have an arteriogram this coming week to determine the exact location of the issue and will most likely be having surgery shortly after. I know another women who had this issue back in 2001 and also had surgery and was racing pain free in under 3 months. She said the surgeon she saw is now at UVA. His name is Dr. Kenneth Cherry. My ortho did say to only go to the doc he recommended because most vascular surgeons would be pretty clueless about this condition. When I called the vascular surgeon’s office to schedule an appointment and said who was referring me they knew exactly why I was coming in - I thought that was a good sign. I can’t say how the surgery and recovery is since I haven’t had it yet, but I’m so glad to finally know what is wrong and that it can be fixed. If you haven’t found a doc yet in your area I can always ask my vascular surgeon if he knows someone in SoCal who works with athletes and has treated this condition. There absolutely has got to be some docs in CA who can treat you!