Iliac Artery Endofibrosis

Navvyy

Hi folks. I'm not looking for medical advice. I have a diagnosis after 4 frustrating years and am meeting my surgeon on Monday to decide whether I want him to operate or not. He will reconstruct the damaged iliacs (both legs) with veins from my legs - lovely

I'm hoping to hear from anyone who has had this done. Could you return to cycling? Were you "as before" or severely limited? Would you get the operation again? Did it reoccur?

For context I'm a 45 year old plodder - not a 30 year old elite who might have very different expectations! But I'd love to be able to bike and run again without pain. I want to be a 65 year who can do sportives and enjoy my biking with my friends.

Hope someone can help with their views and thank you for reading.

crosstownk

You're 40 year old 'plodder' as you put it. What level of activity do you currently do - or to put it another way, how much are you limited by the problem?

I have a similar issue (similar age too). It came on gradually but it manifested as a pain in my right leg. After a few months I went to my GP who referred me to a vascular surgeon. An CT confirmed an issue with my right external iliac. I asked about surgery but the surgeon was not having it as he considered it too risky.

He also told me that if I did gentle exercise I'd eventually be able to walk 2km without any bother - this p1ssed me off, naturally. Anyway, he also said that the more exercise I did the more the other arteries would expand and collateral supply would be increased (not restored).

So I did exactly that, I cycled and cycled and it was painful at times but after a few months I was back in the hills - Sally Gap, Wicklow Gap, etc. I'm lot slower than before and somewhat painful and uncomfortable at times but the more I did the better I became at managing it. I don't really pay attention to it anymore but I'd be lying if I said that it doesn't bother me at all.

In short, it won't ever go away and it will always have me slower than before but I can still cycle the same roads without the need for surgery.

That's my 2 cents and while both our issues relate to the same artery, they may be entirely different.

My advice would be to take the advice of your surgeon and don't rush into anything. Get a second opinion if you think it will help.

Best of luck. Feel free to ask/PM me any questions.

TheDocMan

Had this and had surgery for it at 44years old. Surgeon had no reservation about my age. Once I got back cycling after 4 months there was immediate relief. Never regret getting it done and anybody i know who had it feels the same. Im interested though that you need bilateral repair. 90% occurs for some reason on R side.Welcome to PM me for further information/ discussion.