Illiac Arterial Endofibrosis
Ok team- throwing this out there for ANY information you have.
I have been to more doctors than I can count trying to figure out what is going on with my legs- I recently was sent to a vascular surgeon who did an ABI test- which showed a significant drop in my ankle and arm post exercise. Along with my symptoms they have diagnosed me with illiac arterial endofibrosis. I guess it is very rare and the docs around here don't know much. I am in a holding pattern on what to do and how to fix it still. Anyone here know anything??
I have been to more doctors than I can count trying to figure out what is going on with my legs- I recently was sent to a vascular surgeon who did an ABI test- which showed a significant drop in my ankle and arm post exercise. Along with my symptoms they have diagnosed me with illiac arterial endofibrosis. I guess it is very rare and the docs around here don't know much. I am in a holding pattern on what to do and how to fix it still. Anyone here know anything??
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4830654/
After many health providers, I was ultimately referred to Vascular surgeon (I'm in Toronto, so unless you're in Canada, the referral is useless) who ran me through the variety of tests, including the ABI, and confirmed that there was indeed a kink in the Illiac artery. He refused, however, to actually cut. In his view, the surgery was just too serious to undertake to achieve improved triathlon performance.
I'm going to ballpark this at 6-7 years ago. Althgough it has persisted, frankly, it hasn't hindered (I think) too much - I've been to Kona 4 times since then and continue to develop run speed and power, through my late 40s (although the gains are now marginal!).
That said, it's frustrating, and my own experiences showed that I was unable to really get past 8-10 minutes or so of LT or FT work before the "wooden leg" sensation set in, and I would need to stand down for a few minutes. As such, I have, over time, adapted the work intervals and recovery intervals in my "get faster" sessions to mitigate this, and still get the required work done and achieve the desired adaptations. I hope.
Things that really should not have made a difference, but do:
-running tall, not bending at the waist
-running mostly on flats, not hills
-being hydrated
-working with a bike fitter who understands this malady
-hip flexor stretches
-correct bike fit, hip angles in road bar drops and in aero position
Key resources you'll want to hit are
-the "Illiac Endofibrosis - I've got it" thread on Slowtwitch
-Google article about Josh Cox (hote - not a happy ending, but this isn't a direct result of IAE)
-Google up IAE, Dr Rose, I think in North Carolina. I think he's the go-to in the US.
Questions?
Anyways- Questions- YES!!! A TON!!!
So here is my concern- I have been able to continue to train- but hills are a big problem for me- and so is any type of power- so this has really effected my training-is there something you did so it doesn't effect your training?? Also- what differences have you made in your bike fit?? The bike seems to bother it more- or anything in that bent position.....
I have had 3 professional bike fittings since 2013- and 2 of them with Todd at TT bike fit in RI---smart guy. So my position is synced up appropriately but now with my condition- not sure how it should change??
So I have heard of Dr. Cherry and actually another athlete in Connecticut- who through different connections I found out had this- she actually flew down to see him and had him do the surgery. She is now recovering well and has been "fixed" for now. The docs I am working with don't have much expereince with it- and openly admit to that- they are not sure what to do next and have a team of docs discussing the case. They would like to do an angiogram or plasti? Where they take pics of your arteries...did you have that done?>
I know this is a lot of questions but I am lost and would appreciate anything you could share/answer! THANK YOU !!! I APPRECIATE THIS MORE THAN YOU KNOW!!!!!!
Perhaps there will be some good information for you there.
I've thought this is something I have as my left leg nearly always feels "tired" or like it is doing the majority of the work. I have not seen a vascular surgeon for a diagnosis as the test is non existent here in Rochester, NY.
I have to friends here in Rochester who had the surgery by Dr Cherry. One is still struggling (1+ year or so post surgery) to run again at the level she was, and the other is doing ok. She still isn't sure she is 100% back. From what friend #2 says, it is rare.
I hope this helps.
Beth