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Re: Illiac Artery Endofibrosis - I've got it. [Flick30] [ In reply to ]
 
Hi

I dont know much about Common Iliac Endofibrosis and in particular how ABI's can be normal particularly if the artery is indeed blocked.

Given that this is the diagonosis have you consulted with Dr Bell as too what procedures are required/recommended to recitify the artery.

Was it only in one leg or both.?

Does the common iliac bend when in the riding position.?

Has the artery wall been compromised or is it in good condition.?

Sorry lots of questions.....which I'm sure you will be researching. Good luck.

I haven't decided as yet........but still weighing up my options.

 
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
 
Have any of you who have suffered from this condition ever had arterial blood clots in the legs as a result?
 
Re: Illiac Artery Endofibrosis - I've got it. [Pebble] [ In reply to ]
 
I can't speak for the others on this thread, but no, I have not.
 
Re: Illiac Artery Endofibrosis - I've got it. [Pebble] [ In reply to ]
 
Pebble wrote:
Have any of you who have suffered from this condition ever had arterial blood clots in the legs as a result?

I had a venous blood clot (DVT/PE), which is a different thing. They say it's unrelated, but I'm not sure I'm buying that. I presume you've had an arterial blood clot? If so, I'm sorry. That can be a really bad situation.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Yep 2nd batch of arterial clots, this time in the left leg, reading back there are a number of posts that give me confidence.
 
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
 
I second Dr Cherry

Swifty

 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
My name is Tammy and I think I might have talked to you before I had surgery with dr cherry. Are you a bike fitter? I live near Chicago? If I did talk to you over the phone could you please email me. I have a question about bike it.

tammyclifka@sbcglobal.net
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
After having gone through a butt load of testing, it appears I have more than one issue going on. Fortunately no cardiac involvement. MD and therapist are at odds, but definitely some physical issue with my left foot and with my right hip. I also seem to have a variation of EIAE. I do not have scarring, but have a kink in the junction of the exterior iliac and femoral arteries on both sides. In a bent position the kink causes about a 50% constriction of the vessels on the right and really no constriction on the left. The options are surgery to shorten the external iliac or patch the distal external iliac and proximal common femoral artery. I haven't followed up yet to learn if it's an either/or, or if he won't know until he goes in which is necessary.

For now I've had to give up the road bike and am just doing 28 miles/wk on a fat bike, plus running 2 miles a time or two a week. I'm trying to treat the ankle and hip, as both are pretty painful. However, due to insurance issues I need to get any surgery done this year, so I'll be following up next week. My problem will be having to find some way to get to/from Rochester, MN (as Dr Bower is who my insurance is authorizing me to treat with) and being able to take care of my house and stuff while I heal as I don't have anyone to help out with that stuff.

Anyway, should know more next week and plan to have some type of surgery before the end of the year (and then complete rehab; I've lost muscle on the left and can't curl a few toes on my right foot, to name a few repercussions of the foot and hip issues).
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Anyone ever had a CT show a tortuous artery and a kink when in the cycling position with no artery wall thickening/scarring visible, but then when they do surgery they find you had scarring? Just curious if that happens, and how often. Surgery is tentatively scheduled for 12/23 (trying to avoid having to pay large deductibles and out of pocket maximums over two insurance plan years). Surgeon is kind of 50%/50% as to whether releasing the artery (and shortening it, I think) will help since I only have it in my right side and there's no wall thickening (that's my power side!). He would only feel confident if it was on both sides. Personally, I'm grateful it's just one side :) I always feel the "lactic acid" thing in both thighs with any effort, so I guess I'll see!
 
Re: Illiac Artery Endofibrosis - I've got it. [lynne955] [ In reply to ]
 
Hi Lynne--Sorry I missed your previous post. I'm glad you've been able to get at least a tentative diagnosis, but so sorry you have so much going on! I don't think that's really unusual with these blood flow issues -- hard for muscles/joints/tendons to respond correctly when they aren't getting appropriate blood and/or when you're compensating for those issues. I don't have personal experience with no visible scarring (mine was very visible on the CT!), but I know that mine was much worse than the doctor was expecting from the CT. I think all the diagnostic tools, while pretty miraculous, are only able to give an indication of what's going on and not the full picture, so it seems as if it would be completely possible that they would find something more or additional once they can actually see it up close and personal. Is the surgeon you're going with the one who was recommended by Dr. Cherry?
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
No problem! This is a pretty old thread now :) Yes, this is the surgeon who was recommended by Dr. Cherry. I'll be interested to see what it looks like when surgery is done. He was trying to dissuade me and I understand why (he keeps pointing out that it should only impact me in cycling and that I'm not a high level athlete), but given that I sleep in a fetal position and tend to sit with my legs curled up, it would be nice if I had circulation sleeping and sitting, too :)

I started pedaling inward toward the top tube maybe 5 yrs ago or so, and started hitting my knee on the top tube this year. Massage therapist and fitters told me the inside of my thigh is really tight but no matter how much I tried I couldn't stop doing it. I was considering adding blocks to force me to use the outside of my quads more. Guessing that's probably how some of the stuff that needs PT evolved (compensating).

I wish the surgeon would at least tell me how long I need to be off work, etc. He keeps focusing on the stuff that needs PT, and that this is basically only necessary "if you want to keep cycling". Um, yeah-even if I can't race and defend the 2013 TT series win that I worked 4 yrs to get, it sure would be nice to be able to do the cycling vacations that had become the highlight of my life the past 10 yrs!

Anyway, guess I'll find out in December if he doesn't change his mind :)
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I've read a lot of post on here and what bothers me the most is how people keep saying that the problem won't fix itself. That is a flat out lie. Obviously you have to trust your specialist opinion over anyone on a public forum and self proclaimed student dr.s good grief. From what you are saying tho, is that your only compressing the artery while cycling so the simple answer is to STOP cycling, hello!?? However I know how obessive cycling could be so a positional adjustment might be the key to continuing without any symptoms regular check ins with your specialist to make sure things aren't getting worse. By what you are saying I would also say to take breaks while riding and stand up straight while on the break. I think you'll be just fine. I'm proof that the problem fixes itself. I completely blocked my iliac artery and while it blocked shot clots behind my knee but the body makes bypass arteries to compensate I had a bypass at the iliac and at all three major arteries at the knee. I could go back as is and still push well over 4 watts per kilo and be competitive enough as is, surgery would make me much much better, but as aggressive as I ride I prolly need a graph and all the risks every 5 or so years a stint every other ride or run the risk of ruining my "fixed itself bypass" at some point, so I decide not to ride row or run. Right now my Abi at rest in my leg is .79 which isn't bad but isn't normal my team of techs nurses and surgeon are confident I will get that number back around 1.0 as the body continues to heal itself as it as been. I know this thread is kind of old so what did you decide to do and where are you at today??? Hope everything worked out for you!!! On top of all that God makes the decision on what happens so I trust his will is to only continue to fix my leg:)
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
This problem will not "fix itself" and is very specific to each individual's anatomy. Most folks do not discover this problem until the iliac artery has been damaged. There are many medical studies that show the problem does not repair itself.

Interesting to note that you have only registered to post today and this is your first post.

I would be curious as to who your doctor is that told you this would fix itself. Not to be sarcastic - but if your body made a new artery to bypass your existing iliac artery, I would say you are a medical miracle and recommend that you donate your body for study after you die
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
And what is your expertise? I'm going to trust the x-Rays the three vascular surgeons (who I will admit are a bit baffled by what my body is doing) the ultrasound tech and all staff and family who have been supporting me in this ordeal or a guy on a forum calling himself the mad cyclist. But thanks I guess, it is bit of a miracle from God I will admit. But as for it being my first post, yes I have been doing some internet research (which is bad) about my issue and was reading through the post and wanted to let the orignial poster know that there was legitimacy to what his dr was thinking which is a no duh, he is the surgeon! Thanks again
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
I trust your claims just as much as you trust mine . . .

If you have actually been consulting Dr. Google, you will find that medical research does not support your claims.

Again, I would love to know where you are being treated and the names of your vascular surgeons treating you. I am also curious about their experience with this condition.
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
You pretty much just told me to trust Dr. google, over my 3 renowned Vascular Surgeons ...... that's the stupidest thing I have ever heard of.... I'm done replying to your comments.
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Well, I guess God just doesn't love me as much as he loves you. I gave up cycling and running and grew all sorts of collateral arteries. And, yet, I ended up with both iliac arteries blocked, exercise ABIs below .3, and barely able to walk. Resting ABI is rarely the issue; itís the exercise ABI thatís important, assuming you would like to do even some basic exercise (say, walk) -- even at my worst, my resting ABIs were the same as yours. All that spaghetti-like crap in the picture below is collateral blood flow, the "fixed itself bypass" you refer to. Didn't solve the problem.

The only reason I'm responding to this is because I know this thread turns up high in Google searches on iliac artery endofibrosis and I'd like others who read this to be well-informed. But like themadcyclist, I'd love to know the names of your vascular surgeons and their experience with this condition.


 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Simple request - please identify your 3 "renowned" vascular surgeons who have told you this,
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Awe man, sucks for you... I'm assuming you're older... I have since your first reply... My collateral is just one big artery, does t look anything close to that. Hopefully you keep pushing through the pain and those noodles will turn into strong healthy adiquite compensating ones. Good luck buddy. I will pray for you because God does love you every bit as much as he loves me.
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Johnavelo9 wrote:
I've read a lot of post on here and what bothers me the most is how people keep saying that the problem won't fix itself. That is a flat out lie. Obviously you have to trust your specialist opinion over anyone on a public forum and self proclaimed student dr.s good grief. From what you are saying tho, is that your only compressing the artery while cycling so the simple answer is to STOP cycling, hello!?? However I know how obessive cycling could be so a positional adjustment might be the key to continuing without any symptoms regular check ins with your specialist to make sure things aren't getting worse. By what you are saying I would also say to take breaks while riding and stand up straight while on the break. I think you'll be just fine. I'm proof that the problem fixes itself. I completely blocked my iliac artery and while it blocked shot clots behind my knee but the body makes bypass arteries to compensate I had a bypass at the iliac and at all three major arteries at the knee. I could go back as is and still push well over 4 watts per kilo and be competitive enough as is, surgery would make me much much better, but as aggressive as I ride I prolly need a graph and all the risks every 5 or so years a stint every other ride or run the risk of ruining my "fixed itself bypass" at some point, so I decide not to ride row or run. Right now my Abi at rest in my leg is .79 which isn't bad but isn't normal my team of techs nurses and surgeon are confident I will get that number back around 1.0 as the body continues to heal itself as it as been. I know this thread is kind of old so what did you decide to do and where are you at today??? Hope everything worked out for you!!! On top of all that God makes the decision on what happens so I trust his will is to only continue to fix my leg:)

As others have already responded, this issue does NOT fix itself. Sure, stop cycling or running and you don't have the symptoms or problems because the problem is not at rest but when active. This is the same flaw when you say your ABI is normal at rest. My ABI was normal at rest before surgery too - but it was far from normal during and after exercise, which is the issue. The issue is not at rest. Saying that IAE will fix itself it the flat out lie. When you are completely "fixed" (without any surgical intervention) and have a normal ABI during and after cycling/running then you can say you are "fixed", but you even admit you aren't "fixed" now... so how again has your IAE fixed itself?
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Johnavelo9 wrote:
Awe man, sucks for you... I'm assuming you're older... I have since your first reply... My collateral is just one big artery, does t look anything close to that. Hopefully you keep pushing through the pain and those noodles will turn into strong healthy adiquite compensating ones. Good luck buddy. I will pray for you because God does love you every bit as much as he loves me.

Yes, I'm older now, but was 28 when this problem started. It took me out of competing as a professional -- when I was 29. Age isn't the issue. The issue is that it does not fix itself. It took me 25 years to get diagnosed. In that 25 years, it got considerably worse, in spite of all the collateral blood flow that developed, until I could barely walk around the block. Like little red said, let us know when it's fixed itself enough that your post-exercise ABIs, not resting ABIs, are in the 1.0 range. Good luck!
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Little red, I'm not falling for that. Yeah you can say that and fancy yourself right but the truth is, is that if my abi was .56 and is .79 and continues to get better then to me, that's fixing itself. When I'm at 1 I'll let you know. Just because surgery is a quick solution I'm not buying into it the life of the graft is maybe 10 years then you have to go in for another I'm not doing that surgery 4 times in my life. I have full mobility in it and should only get better, I'm more active then most people I know and 4.36 watts per kilo was always the best I could do, if I had surgery would I improve those numbers , answer is yes but I'm not a pro where my income depends on it. I'm happy with what I'm able to do. I'm happy not being part of the cycling community anymore as well, you guys are truly just a bunch of downers. Sorry but not sorry.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
All of you are old angry road cyclist, you didn't have to say it, it shows in your posts.
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Nope, I'm not a downer at all nor am I old. I had surgery for my IAE and have had zero problems since. Since surgery I've completed 6 Ironmans, 2 trail 50K ultra marathons, and tons of various distance triathlons, road and trail running races, and cycling races. I'm quite happy being able to do what I love with no limitations.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Grats!!
 

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