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


Nice post Heidi. Agree that this forum pulls in "internet researchers" for this condition. Bumping it up a bit ;-)
I'll let the Dr. Googlers read between the lines with the opinions on here ...

____________________________________
Fatigue is biochemical, not biomechanical.
- Andrew Coggan, PhD
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
Ok, we are all dumb and angry cyclists who remorse not being able to recover from this on our own.
Now can you please tell us the names of your doctors so that we may also recover like you did?


Duathlete by choice?
http://parigari.blogspot.ca/
http://www.3sixty5cycling.com/ Ask me for a $50 discount on 3SIXTY5 Wheels!
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
I don't know what your intentions really are, so, no.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
I've been following this for a few years as I believed this is the problem I have. 8 years ago the docs did an angiogram of my calf and decided nothing could be done. This past summer my quad gave out and I quit running and cycling.

An ultra sound of the whole leg and ab showed a big blockage. The technician kept poking and prodding until she found it. My vascular surgeon has booked me for an angioplasty on Monday. He's going in through the groin and putting a stent in.

Based on all the posts here this doesn't feel like the right answer. I thought the ultrasound technician found the blockage higher up in the ab and not the groin.

My question - has anyone has success with this with a simple stent through the groin (he's going up into the right side and looping to the blockage on the left)? I think focusing on the calf 8 years ago was my fault - I drew their attention to that area so I'm going to let him go in and do the procedure but I'm thinking a rebuild it probably what's required.

This has been an extremely good reference for me as there wasn't much info on the net. I quoted it to my doctor but as you can imagine that didn't go over well!

Wanda
 
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
 
No, from what I was told a stent will not be a long term fix for an athlete. I would recommend finding a vascular surgeon who is familiar with this condition in athletes. I don't know where you are located, but Dr. Cherry at UVA is who I went too and has been the leading doc for this condition amount athletes for a very long time.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
And not to burst your bubble but you are old, (saw your tweeter:/) sorry. I'm 30 and that's getting a bit old for the body to heal itself, but it's all good. I'm glad surgery is going great for you and gave you the ability to do what you love!!!
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
DUDE - you really have no idea what you are talking about.

Some of the athletes Dr. Cherry has worked with who have been diagnosed with this condition are MUCH younger than you are.
They did not magically grow bypass arteries but needed surgery to correct the problem to restore adequate blood flow to their working muscles.

If your claims are correct, it would do you NO HARM to identify the doctors who have helped you address your condition.
Indeed, if your heart is in the right place, you should identify who you worked with as it would help others dealing with this condition because any one who happens on this thread like you did now has an actual medical doctor and can now seek actual medical advice from that doctor.

Right now, you just seem to be the typical internet troll with unsubstantiated claims who won't disclose any research to support his claims or the doctors who treated him.

And yes, I have a very short fuse for people who offer incorrect, unsubstantiated medical advice.
 
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
 
Wanda - I second everything Little Red has said.

Find a vascular surgeon who has dealt with athletes who have this condition. If you are not near Charlottesville, VA (where Dr. Cherry is located), I would still recommend calling him - he will help you find a vascular surgeon in your area who can best advise you on how to correctly manage and diagnose your condition.

Your intuition is spot on - Stents are not a great idea for the groin area for an active person because of the risk of breaking, slipping, and further scarring of the arterial wall. There are some case studies where stents have failed in athletes as they are really not designed for an active individual.
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
 All that I was trying to do was give the original poster another prospective. read what I posted. if he stopped cycling and there was no blockage in an angiogram then it means that in a prone position the artery was fine as long as he wasn't doing 100rpms for over two hours a day, there is no doubt that he would be fine... furthermore, I said another option would be to change his position to take some of the pressure off the artery if he wanted to continue cycling. further furthermore like I said even for myself I would be a better cyclist if I did do the surgery but there are a lot of risks that come with the surgery. on top of that it would only have about a 10 year life depending on what the doctor saw I'm sure it varies but like any prosthetic and in that area durability will always be in question, life of the graph, bleeding risks, all of that, its not worth it to me. my dr did say he does expect to see me in the future 30-40 years down the line but ill take my mobility now and when im 70 decide if I want the surgery or not. I'm glad your on a short fuse, that's typical, I don't know what your true intents are, it sounds like you just want to call and harass the surgeons, so no way am I going to disclose their information to you knuckle heads! everyone is tough behind a keyboard, see how short your fuse is in person, buddy:/ I will no longer post anything to anybody who just wants to argue. I said my piece to the original poster and it was drowned out by a bunch of Dr Googles, if he chooses to use it or doesn't will be up to him:)
 
Re: Illiac Artery Endofibrosis - I've got it. [themadcyclist] [ In reply to ]
 
Yes, that's what I thought. But I'm in Canada - free heath care and all but ... I'm going to let him do the stent and then advocate for the right solutions if it fails. Again, with the exception of the latest poster, this has been the most informative conversation. I will encourage my doc to talk to Dr Cherry. So appreciative of all who have posted

Wanda
 
Re: Illiac Artery Endofibrosis - I've got it. [Wanda] [ In reply to ]
 
As others have said, they don't usually stent in the iliac artery in athletes because of the high rate of failure. Dr. Cherry responds very quickly to email; I imagine even more quickly if it comes from a fellow vascular surgeon. Try to convince your surgeon to email him, or email yourself. His email address isn't on his UVA webpage any more, but I think it's kjc5kh@virginia.edu. If that doesn't work, his UVA webpage is here.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Interesting that this topic just became refreshed as just this past week read the entire 8 pages. I am pretty sure that my issue is related. I contacted Dr Cherry, and he referred me to a surgeon that he works with in my area, Colorado, who has repaired many of these and has a detailed diagnostic approach. My concern is that my issue never goes away. My legs always hurt, and it gets significantly worse when cycling. I was told this is not typical. It has been going on 6 years now. Pain never goes away. If I sit too long my legs are worse, laying supine makes me worse, driving in a car makes me worse, hunched over my bike considerably worse, sitting more upright on the bike is not as bad as on my drops.

I am in the process of getting an appt with this local surgeon, but was able to communicate through email as I work for the same company, and he described the testing procedure for me. I am hoping this will finally give me some answers, though not sure I would undergo surgery until I learn more about the outcomes.
 
Re: Illiac Artery Endofibrosis - I've got it. [biker2035] [ In reply to ]
 
Sorry you are dealing with this. Your issue does sound different since you say you still have pain when not exercising. At least in my case, as soon as I stopped running or cycling the pain/tightness/numbness/constriction feelings would go away and I never had any symptoms at rest. Honestly, if you do find out you have IAE I would recommend the surgery. Just be sure it's done by an experienced surgeon with this condition in athletes, which it sounds like are doing to see. I had the surgery in 2009 and have been able to completely resume training and racing with none of the IAE symptoms again. I have zero regrets other than I wish I was diagnosed much earlier in the start of my symptoms and wish I could've had the surgery sooner. It gave me my life back in terms of being able to do the things I love to do. Sure, I could have given up running, cycling, and triathlon and been just fine without the surgery (as in this is not a life threatening condition), but for me that would not have been a very good quality of life. Good luck and I hope you are able to get a correct diagnosis and able to get your issue resolved!
 
Re: Illiac Artery Endofibrosis - I've got it. [biker2035] [ In reply to ]
 
In line with what little red said above, if you end up having IAE, think carefully about the surgery. There are definitely risks, but like I said a few times above, mine continued to deteriorate pretty significantly even without running or riding. It seems to me that it can't be good to have such limited blood flow to your lower extremities, even if you don't want to work out; poor peripheral blood flow is a huge issue for diabetics, so I'm not sure why it would be different for non-diabetics. I just put a major gouge in my leg mountain biking which got infected and turned into a huge deal -- what if something like that happened and I had limited blood flow to my leg?? Of course, without the surgery, I wouldn't have been on the mtn bike in the first place. :) But, anyway, something to think about while you're weighing risks/benefits.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
Heidi and everyone else:

First of all thanks for sharing all this information. I've been following this thread for a while but staying quiet because my diagnosis wasn't sure.

It's amazing how serious this issue is, and yet it goes by undetected for an average of 5+ years! And also that when you google for opinions/experiences...This is one of the first pages that shows up.

Anyway...my story is similar. I started feeling weakness in my legs 3-4 years ago along with recovery and fatigue issues. For a long time...I played the same game: maybe I m training too much, maybe my bike fit isn't right, etc. Well...my first ABI test came in at 0.55 in the affected leg, and once a standard test was done...it came to 0.29. At rest everything is good with an ABI of 1.05ish.

Ultrasound revealed a 4-5cm portion of the EIA that has hardened up and wont expand during exercise....so....bingo.

My main question to all of you is just if you know of any doctors/surgeons that you recommend on the eastern Canada side. My doctor here calls me a mystery because I don't show symptoms while cycling...it happens mainly while running. During cycling...I can sort of warm up and make the symptoms go away, or easily deal with them unless Im already fatigued from a heavy training load (such as at the end of a 2-3 week build).

Also...apart from Heidi...whose symptoms kept getting worse without surgery even after you stopped exercising?
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
Blitz,
You may not be asking me and don't have to take into consideration what I'm about to say, so if that is the case you can stop reading this now.
when I initially went in I was only able to walk about 100 yards before I was dragging my foot. when I was on the table doing an angiogram My Dr. recognized that my iliac was pretty much 100% blocked but while consulting with 6 or so other surgeons decided that what was best for me was to stop everything send me home and put me on blood thinners with the idea that because of my age and health and the size of the compensating artery that I would eventually be fine. but still didn't understand that if I compensated so well why I could only walk but 100 yards, so he shot more dye in and saw that I had all three arteries blocked behind my knee and that is why I had almost no mobility. tried to remove them, couldn't, and opted for surgery "fix it all in one shot" I didn't want to have surgery and he didn't want to force me and told me the other option would be to go in threw my foot to free up the main artery behind my knee to give me mobility and go from there, or do a major surgery to free up all the arteries in my lower leg only, which caries less risk. I told him no, just the one is fine, so over the weekend he had consulted a very renowned surgeon who was going to assist him in the surgery and who was urging to do it and another surgeon who was urging to just clear out the clots (still by major surgery). because of this, he decided he was going to go in on the same side that the blockage was on so that he could clear all the lower arteries, he told me there was higher risk because of it but was confident he could do it because I was super lean. I believe it was his first time ever attempting such a thing, usually they go in through the opposite side but where my artery splits is very V shaped as opposed to a more U shape. anyways, he did it flawlessly clearing all arteries behind the knee.
here's where the surgeons were divided, the main one there believed that if I wanted full mobility with no imbalances surgery was my best option the other believed that because I had a "extremely well compensating collateral" the blood flow to my leg would be so extreme that I wouldn't be able to bare the pain that it would cause. so, something would also have to be done about that. Coupled with my attitude about not having surgery my primary surgeon said that we (the other surgeon and I) convinced him that removal of the clots was best for me, and also long term this meant maybe one surgery when I'm 65-70 rather than a new graph every 10 or so years. He was also very adamant about no cycling, rowing, grappling, palates things of the nature no matter what I chose, stenting it was never an option because he said (no matter if you fancy yourself athletic or not) its a very mobile area and without any exercise and just walking would give it a 1-2 year life. stents are for either much higher up or around the heart. flexing metal stents, period, shouldn't happen.
To the Point:
My concern with you is that with any type of ultrasound or angiograph, what may look like 3-4cm might be more like 7-12cm once they open you up and see where and how the artery actually moves in that groin buttocks area and the longer you've been cycling the more likely its been stretched and narrowed and the longer the prosthetic will have to be (maybe not but maybe so) the less life it'll have and need to be replaced. but I have only been getting better since getting out of the hospital and we are all confident it'll get better as long as I stay active. its really up to you if you want to continue to cycle. I swim now and can swim all day without any issues. like you I never felt it on the bike except for Vo2 days and race day when the race was hard. I remember once when a racer who took 2nd told me "how was that so easy for you" I told him " it wasn't! my left leg felt like it was going to explode". and I think it was running that kicked around the clots because the day before this all happened I went on a 5 mile run and hadn't ran in like a year so for a few days I thought it was just a bad crap from the run.

hope everything goes well for you and if you do have surgery good on you hope it allows you to do everything activity wise that you seek to do! I have a family that because of cycling 5-6 days a week 2-5 hours a day, I have put on the back burner for longer than I ever should have so now I focus on them! good luck to you!
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
Having issues cycling versus running may depend on exactly where the issue is in the artery and what the issue is. I had surgery for both my femoral and iliac artery and my issue was that the inguinal ligament compressed the artery during exercise and this caused a stretch in the artery that resulted in the damage in both areas. They released my inguinal ligament too so the compression is no longer a concern. Some people have this issue because their artery is too long and kinks. It isn't always the same thing. Also, I had symptoms both running and cycling but they were actually worse while running - but the symptoms were different with each. I wrote down the symptoms I had while cycling and the symptoms I had while running to give to my doctor to help figure out what was going on. With cycling I could still manage to ride, although not at nearly the same level, even though my leg would feel weak, but I would get some relief when coasting or getting sucked along in the draft on a group ride. With running it was like I had a blood pressure cuff around my calf and quad and I would just have to completely stop. When it got really bad right before my diagnosis my foot would go numb when I ran. Anyway, my point is that while it might be unusual I don't think it's unheard of for the issue to be worse running.
 
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
 
Thanks for your thoughts. I will ask my doctor about multiple compressions and the possibility of a ligament/muscle trampling the artery.
Last edited by: blitzkrieg: Feb 6, 16 21:57
 
Re: Illiac Artery Endofibrosis - I've got it. [Johnavelo9] [ In reply to ]
 
So you're saying that the surgery you had....the surgeon went through the foot up to your knee to remove the clots there?

As I understand, there are no clots with EIA. Simply hardening of the artery. In your case, once the knee clots were removed, you were able to recover from the EIA hardening in your own by just riding tempo level ( I.e. as long as it didn't hurt bad)??
Last edited by: blitzkrieg: Feb 6, 16 22:00
 
Re: Illiac Artery Endofibrosis - I've got it. [blitzkrieg] [ In reply to ]
 
My EIA is blocked but has been compensated for so that has gone untouched, while it was occluding it shot multiple clots down my leg. No, he thought if he were going to do an angioplasty he would most likely come up my foot and it would be a straight shot since he couldn't go through my right side up and over. But he would have only been able to unblock one artery that way so he entered in through the left side to do an angioplasty on the left side to get all the clots out. He said the only reason he attempted it was because I was very lean and it was virtually a straight shot, luckily it went great, a lot of it was because he is a great surgeon! Hope that helps. And yes, on the bike it takes an over threshold effort (vo2) for around 5-6 minutes to get the same effects that about a mile of hard paced running would do to deprive my leg of blood. But I don't ride anymore because I don't want to risk any further damage.
 
Re: Illiac Artery Endofibrosis - I've got it. [spessx] [ In reply to ]
 
I've had this condition and very successful surgical repair. I blogged about it, here's the surgery post: http://www.cortthesport.com/...c-artery-repair.html

I've had several people contact me about the condition so decided to start a Facebook page about it if anyone has questions or wishes to discuss:

https://www.facebook.com/groups/463852263810595/


Please join!!


Many of us suffered for years without a diagnosis. It can end enjoyment of running, cycling, and other sports.

Cort the Sport | http://www.CortTheSport.com
 
Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
 
Lets get rid of the elephant in the room - if you are healthy enough for sex - then all the rest is trivial in the scheme of life.
 
Re: Illiac Artery Endofibrosis - I've got it. [ou8acracker2] [ In reply to ]
 
Precisely
 
Re: Illiac Artery Endofibrosis - Do I have it? [Mmiller] [ In reply to ]
 
how did the surgery go.

have you fully recovered.
 
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
 
HeidiC wrote:
As others have said, they don't usually stent in the iliac artery in athletes because of the high rate of failure. Dr. Cherry responds very quickly to email; I imagine even more quickly if it comes from a fellow vascular surgeon. Try to convince your surgeon to email him, or email yourself. His email address isn't on his UVA webpage any more, but I think it's kjc5kh@virginia.edu. If that doesn't work, his UVA webpage is here.

Update: surgeon did an angioplasty - no stent. He found it surprisingly easy to get through the blockage, no disease.

The follow up ultra sound showed good blood pressure in my legs but the technician found a flap or bump. She and the radiologist figured this was the cause of the "sludge" build up. The surgeon said to leave it as is and to call him if the symptoms come back.

He reported that in a year or two a self-absorbing stent will be available which would suit an active person better than the current stent, which he thought would do more harm for an active person.

Hard to conclude if it worked as 7 months of inactivity has taken a toll! But I can feel the difference.

So no major surgery for now.

Thanks for all the info.

Wanda
 

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