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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [HeidiC] [ In reply to ]
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HeidiC-thanks for your valuabel input to this forum and the other forum about IAE. Can I ask, what sort of imbalances did you experience? I have an appointment with Dr. Jason Lee at Stanford next month to get an ABI test. I had R side transverse and lower ab weakness for years that I struggled to correct and could not. I have a trainer at the gym who is amazed at how imbalanced I am. I think the psoas on the R side tried to compensate and contributed to IAE. This is all my theory until I get the ABI test since when I first stopped cycling, I happened to have buldges and ruptures in my back and one ortho says my problems are still my back, and two other orthos say my back is fine. All 6 cortisone/nerve blocks to the disc did not help. A muscle therapist says it's all in my head. I started to cycle on flat land since I totally lose all power on climbs (even though I was a climber). My normalized power on rides are going down on the R side no matter what I do even though my "back is fine" and "it's all in my head". I feel like the coordination in my R leg is decreasing. All my symptoms are what were discussed in the other forum exactly. I just wondered if you could expand on your imbalances and how they are progressed after surgery to now.
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [MicheleM] [ In reply to ]
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Hi Michele: Yes, transverse abdominis, internal and external obliques, and some of my spinal muscles have been significant issues for me for years. I've also had issues in my hips and legs, with muscles picking up the slack for other muscles which were weaker or not firing at all. But keep in mind that my blood flow was restricted/missing for 25+ years, so the problems were extreme and the compensations pretty well set in. Interesting about orthos attributing your issues to your back. I may have said this already in one of these threads, but I did rupture a disc a few years after the leg problems started. The ruptured disc caused nerve issues and more acute leg dysfunction (foot drop, etc), which was corrected with a discectomy. When my legs never got fully better, we assumed it was still a residual back/nerve issue but, as it turned out, it wasn't at all; it was the endofibrosis. Your ABI test will be critical to figuring out which way to go. And certainly don't let anyone tell you it's all in your head. I spent 25+ years thinking I was a total head case, when in fact my symptoms were related to a real physical issue -- which doesn't necessarily rule out me being a head case :-).

With respect to ongoing progress in addressing my muscle imbalances, I was hit by a car on my bike a couple of years ago -- not horrible, but enough to mess up my knee and shoulder -- which has limited my forward progress since then. I've had both knee and shoulder surgery so I just can't comment on how the imbalances have worked themselves out more recently. Pretty much, I'm a mess, but it does not seem to be related to the blood flow issues. Prior to the run-in with the car, I was making good progress and finally starting to feel balanced and strong.
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [HeidiC] [ In reply to ]
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Thanks again Heidi for you additions to this thread and the other. My leg problems started years before my rupture as well. The docs said my back should have been better in Oct so I thought it was merely waiting the time out for the disc to heal. I requested an MRI just so I would know whether I was going crazy, and in Dec I still had a "high intensity zone" on my MRI. I would also need a discectomy to take out that high intensity zone but I'm not sure that's the problem since two nerve blocks into that disc area in Jan at the same time did nothing (as did the 4 other shots). My power has been dropping since then, so the waiting is not working. I have imbalances with the R glute med and glute min overuse tendinitis and L (nonaffected side) QL compensation that I cannot seem to balance out more. I will look into your MAT suggestion. I'm sorry to hear about the accident - hate to hear about that especially after you've gone through so much. Hopefully the resolution to your knee/shoulder will be many times faster and more straightforward than the IAE was!
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [little red] [ In reply to ]
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I also have external iliac endofibrosis on the right side. I’m having surgery with Dr. Cherry this month...he says I will most likely need a bypass due to extensive fibrosis.

Did your surgery go well? Any pointers for recovery and transitioning back into training?
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [HeidiC] [ In reply to ]
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Hey Heidi, read your post here as well as the Iliac Artery Endofibrosis - I got it thread. It appears that's locked down now. Can no longer post/reply. Thought I would seek out help on this thread. I have the condition based on everyone's comments. My local doctors in Texas are not being helpful with diagnosis. Saw my CT scan today and doctor informed he didn't know how to help out. Called Dr. Cherry's office realizing this is my only hope only to find out Dr. Cherry has retired. Aghast...our US expert doctor has retired. Surely he taught other doctors or other doctors have come to knowledge of this condition.

Any suggestions for a doctor familiar with IAE?

Thanks!
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [TishTheFish] [ In reply to ]
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TishTheFish wrote:
Hey Heidi, read your post here as well as the Iliac Artery Endofibrosis - I got it thread. It appears that's locked down now. Can no longer post/reply. Thought I would seek out help on this thread. I have the condition based on everyone's comments. My local doctors in Texas are not being helpful with diagnosis. Saw my CT scan today and doctor informed he didn't know how to help out. Called Dr. Cherry's office realizing this is my only hope only to find out Dr. Cherry has retired. Aghast...our US expert doctor has retired. Surely he taught other doctors or other doctors have come to knowledge of this condition.

Any suggestions for a doctor familiar with IAE?

Thanks!

this thread and another are probably the two best on the topic on this forum.

Dan Empfield
aka Slowman
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [little red] [ In reply to ]
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I agree. I have been is surgery twice. I know am an owner of a gortex bypass through the iliac artery and three stints, and a numb calf. I wish I had stopped cycling after my first surgery.
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [TishTheFish] [ In reply to ]
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There was/is a doctor in California - I believe Dr. Jason Lee at Stanford. He trained under Dr. Cherry and was another “go-to” surgeon for IAE. You may need to do an internet search and reach out to his office. Also, you need to have an ABI (Ankle Brachial Index) test, not a CT. This test will measure the blood pressure at your ankle at rest and then after running on a treadmill or cycling. If you have IAE your blood pressure will be markedly lower after running or cycling. Any vascular surgeon should have access to a lab to do this test. The issue may be that with typical vascular patients just walking or doing a test step is enough exercise to to elicit symptoms so you need to be sure to find one with a lab that has a treadmill or you will need to bring in your bike and trainer.
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [Tward] [ In reply to ]
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Same leg or different legs? Do you cycle now?

I had my left leg operated on a few years ago and my right leg has now been symptomatic for the past 6 months or so off and on. I’m debating if I want to get it operated on or not. Dr Cherry did my left leg and since he retired I haven’t heard, or found, a Doc with experience and success like Dr. Cherry.

https://twitter.com/mungub
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [TishTheFish] [ In reply to ]
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TishTheFish wrote:
Hey Heidi, read your post here as well as the Iliac Artery Endofibrosis - I got it thread. It appears that's locked down now. Can no longer post/reply. Thought I would seek out help on this thread. I have the condition based on everyone's comments. My local doctors in Texas are not being helpful with diagnosis. Saw my CT scan today and doctor informed he didn't know how to help out. Called Dr. Cherry's office realizing this is my only hope only to find out Dr. Cherry has retired. Aghast...our US expert doctor has retired. Surely he taught other doctors or other doctors have come to knowledge of this condition.

Any suggestions for a doctor familiar with IAE?

Thanks!


Sorry, I didn't see this post. Wow, I'm seriously bummed that Dr. Cherry retired. The surgeon who did my iliac artery bypasses (Christian DeVirgilio in Los Angeles) also retired and I was counting on Dr. Cherry if I needed a ten year touch-up. Dr. DeVirgilio referred me to David Rigberg at UCLA for follow-up on mine. I can't vouch for Dr. Rigberg's surgical skill, though; I've only seen him once and that was just to review post-surgery function. He seems like a good guy and knows about IAE, which is more than most. He's also a well-respected vascular surgeon in the L.A. area and I trust Dr. DeVirgilio would only refer me to someone he trusted. I would probably go to Dr. Rigberg if I needed an additional surgery, given Dr. Cherry's retirement. As for Dr. Lee at Stanford, I've heard very mixed things. I'd recommend looking at the other thread Slowman linked for some of the comments from people who've had surgery with Dr. Lee. I know Dr. DeVirgilio did a re-do for someone who had surgery with Dr. Lee.

Let me know if there's anything I can do to help.
Last edited by: HeidiC: Oct 27, 18 18:08
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Re: Preventing Iliac Artery Endofibrosis - Cycling Overuse Injuries [Tward] [ In reply to ]
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Tward wrote:
I agree. I have been is surgery twice. I know am an owner of a gortex bypass through the iliac artery and three stints, and a numb calf. I wish I had stopped cycling after my first surgery.

Are you still riding? My understanding is that stents are a really bad idea for EIA because they get crushed under the pressure placed on them by cycling or other forms of exercise, which can then make the problem worse. Many surgeons treat EIA as they would peripheral artery disease and they aren't the same. So sorry you've had these issues.
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