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Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
I have surgery scheduled for Jan 12th with Dr Cherry in Virginia on my Common Iliac artery. Would you PM me? I have a few questions for you. Thanks. I would have PM'd you but since i just joined I am apparently on probation and not allowed. Thanks in advance. -pj
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
I don't know what pm means. I would love to talk to u. My email is jflorance2@yahoo.com. Send me an email. I will then send u my phone #if u would like to talk.
In Reply To:
Re: Illiac Artery Endofibrosis - I've got it. [jflorance] [ In reply to ]
Thanks. Emailed you.
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
PM sent, good luck you picked the right Doc..... flew the day after each time. Won one of the toughest climbing stages at the Tour of the Gila a year post surgery :)
Re: Illiac Artery Endofibrosis - I've got it. [Beachboy] [ In reply to ]
Thanks. I got your PM but it appears that I am still on probation with slowtwitch, and not allowed to send/reply to private messages. Did you really fly home 2 days post-op?
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
Yes, in and out....just give yourself lots of time, walk slow and think about how nice it's going to be riding without numb legs :)
Re: Illiac Artery Endofibrosis - I've got it. [PJR_ATX] [ In reply to ]
I had Iliac artery endofibrosis and I am a runner. I did bike but not competitive. I had the surgery may 2014. I was wondering how you were doing. I still have some symptoms on and off.
Re: Illiac Artery Endofibrosis - I've got it. [tammy] [ In reply to ]
Hello All

Its kenpet again from 2013. For those who have had surgery could you please advise if you consider it was the right decision. What problems do you have post operation....if any.

Thanks ( still considering the surgery )
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
Right was the right decision, wouldn't change a thing other then having it sooner.
Re: Illiac Artery Endofibrosis - I've got it. [kenpet] [ In reply to ]
I had the surgery in May and flew by myself to have Dr. Cherry in VA do the surgery. I feel he is the best and I made the right decision. I am now running competitive again. As soon as I found out I had the surgery. I am 43 years old and so happy now that I am able to compete again. If you would like to talk to me over the phone email me and I will send you my phone # tammyclifka@sbcglobal.net

Re: Illiac Artery Endofibrosis - I've got it. [Eileen] [ In reply to ]
I can't believe it's taken me so long to stumble onto this topic within this forum. I've lived with Endofibrosis of the left external illiac artery for 3 years after suffering symptoms for around 7 years while competing in running and triathlon events, including 3 ironman races.

My symptoms started in my mid 20s when I was training for triathlons. Some thing was 'off' in my left leg, I could never push as hard, muscle fatigue would set in before I could reach sub maximal HR...I settled in to being a back of the pack plodder who always had a 'funny left leg' which sports docs put down to biomechanical imbalances, resulting in tens and thousands of $ in physio bills and endless frustration.

Mostly my running was what suffered, which I now know as calf claudication...and in the last few years of my running life I amended my runs to doing 5mins shuffle, 1min walks. I even complete my 3 marathons during my Ironmans in this manner. Being stubborn as hell...I never gave up.

I gave up triathlon in 2005 but continued to train as exercise is what keeps me happy. I still continued to see various health professionals, none even thought to test my blood vessels, after all I was young, female and fit and healthy....not arterial disease risk.

In early 2012 I went for a ski trip and on my return did a mountain bike ride. Straight after the ride something was not right, I couldn't walk at all. My left leg just dragged behind me.
Investigations begun and initial Doppler ultrasounds in Perth Australia showed no issues. It took a specialist sonographer within a private vascular surgeons clinic to find it...and when he did he almost fell over as he saw that my collateral vessels (other smaller arteries) around the external illiac, had grown so massive that he could barely recognise them. So my stubborn overtraining behaviour had saved my leg....because I kept exercising through pain...the collaterals meant the leg was getting enough blood to be 'healthy'...as long as I was willing never to run again....
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
My story continued...

Diagnosed finally at age 33, surgery was explained to me, that they would need to do a full bypass ....if I wanted....using my own vein....but apon measuring my vein diameters, they are too small.
Surgeons advise ' get used to a sedentary lifestyle' cause we are not going to risk a synthetic vessel in someone so young etc etc...similar to some of your experiences...the issue may come back, you might die on the table....example of the cyclist who died and all that...

So they said come back in 6 months after you have tried to live with it.

The reason they say that is because collateral vessels need time to develop, and they will with patience, meaning your daily pain levels will improve and you will also develop new patterns of movement.

So....I taught myself to walk again, swim again (at first with legs tied together), eventually gently spin on the bike.

3 years on I'm able to do hiking with nordic poles, ride my bike (but not hard and not up big hills), swim, do gym work, some yoga, I can still snow ski (muscle pain still comes on early).... But there is not enough blood flow to enable running. I miss running like a cut off limb...I really do. I still feel like crying when people pass me running. Something taken for granted...

The daily pain gets me down....walking up the road, cramping, pain, slowness, not being able to keep up with others . And what about the mental health issues...feeling like an incomplete person, living with daily pain and disability. From the outset people see me as a healthy fit person, I'm even studying to be a fitness instructor so I can share my story with others, esp allied health professionals.

I've felt so alone....being told to 'live with it' but not finding any real information about other people with the same problem. It's such a relief to finally know I'm not alone. Your stories have given me hope

I know I'm 1.5 years late...but thank you
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
I COMPLETELY understand where you're coming from. But, honestly, if you're really miserable after trying to give it a go "as is," I think you should seek a surgeon who will operate using an artificial graft. I had my surgery in my late 40s, so, granted, older than you, but I'm still fully expecting to have to have the artificial patch replaced at some point. But I have my life back. No, I'm not 100%, but reading your posts brought me instantly back to the way I used to feel -- so completely frustrated and helpless to do anything to fix the problem/wanting desperately to exercise but unable to without that crippling tightness. Plenty of us on the forum who have had the surgery have had artificial patches rather than our own veins. Yes, there are risks, and no, the surgery might not work, but it sounds like you're being told, "live with it/you have no options," when, in fact, you do have options; just not from the surgeon with whom you initially spoke.
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
I agree with Eileen. You need to try to find a surgeon who really understands this condition with cyclists and athletes. The majority of vascular surgeons are clueless about this condition in athletes. I would've sought out a second opinion immediately after any doctor advised me to get used to a sedentary lifestyle. If it were me, I would do the bypass with an artificial graft. My surgeon used artificial grafts on my iliac and femoral artery and I've been back running, cycling, and racing a lot (including 5 ironmans) since my surgery. Yes, a South African cyclist died after this surgery. It was suspected that he did too much activity too soon after the surgery and developed internal bleeding. Of course this can be a risk, but there are risks with any surgery. This is not a surgery to mess around with during the recovery period or try to rush things after surgery. You need to rest to give the fully give the graft time to heal so you don't have any tears. I personally know 5 people who have had surgery (including myself) and all are alive and well. :) I would not accept "living with it". Seek out another surgeon... travel to a surgeon if you have to. I had to drive 9 hours to see a surgeon who specialized in this in cyclists and it was worth it!
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
Thanks for the speedy and supportive replies!

I did forget to say I was referred from the 'nervous surgeon' to a colleague of his who had had more experience in this kind of surgery and could paint me a full picture of what would happen on the table and step by step options depending on what they found. The issue with this new guy was that he was completely the opposite personality and kept saying 'whatever you like I will do it for you'. That doesn't work for me either ...they are the experts ...whatever I like doesn't fill me with confidence.

I'm due to go back this year (unfortunately lack of $ is holding me back from too many consults) to get more information and also medical clearance to do some jobs (I'm seeking a new career). When I see the surgeon I'll ask to be referred to someone who can give me real life patient examples...

My other concern with this kind of surgery is the 'other' effects of major surgery on the body. I have a friend who has had multiple various surgeries and complains of chronic pain, nerve pain, tissues not fusing properly and various other things that affect her quality of life so much that she wishes she'd never gone there.

How did you find the healing of the abdominal muscles? Any remaining weakness or issues? The idea of such major surgery petrifies me, plus the recovery (I'm very bad at not resting). Just afraid if doing more harm than good....as I am kind of 'ok' compared to the society we live in that doesn't understand why people want to do endurance sport ;)

Cheers guys.
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
Ok now I feel like a 'goose' as I've found the more recent pages on this topic (I only read 2013 a few days ago). I'm still so amazed how many of you have experienced this, are living this and have had lives turned around by the surgery.

2 questions I haven't seen covered:

1- for those with a synthetic vessel bypass, do you need to take anti rejection drugs for life?
2- anyone know any surgeons in Australia who work like Dr Cherry?
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
I have a synthetic graft and no anti-rejection medication is needed. Unfortunately, I only know of doctors in the US who work with athletes with this condition, but I'll bet if you really look into the cycling community in Australia you could find of some doctors. This isn't as uncommon as people think among cyclists. If I remember correctly, Stuart O'Grady had surgery for this during his pro years but I don't know where he had his surgery.
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
The healing was not that bad. Yes, I couldn't use my abdominal muscles at first since they had to move them during surgery to get to the artery. But gradually over time that subsided, and was definitely not a long term issue. If I remember correctly I was back running and cycling within about 6 weeks and in the pool as soon as the incision healed.
Re: Illiac Artery Endofibrosis - I've got it. [little red] [ In reply to ]
Impressive....you certainly give me hope that this is not the end.

Who knows, I may become a 'born again' runner in my 40's. Look out world, what can I accomplish with 2 good legs :)

I'll certainly be making a very long questions list for the review I'm planning with my diagnosing surgeon.

Thank you so much for sharing your experience with me.

Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
Good luck and stay persistent!!!!
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
My collateral vessels had 25+ years to develop to compensate for my blocked iliac arteries -- and develop they did. I have an amazing array of collateral arterial growth. But even with that, it wasn't sufficient to adequately carry blood to my legs. My daily pain levels definitely got worse as the years went on; eventually it go so bad that I could barely walk. You can let your doctor know that collateral growth is not an adequate solution. Really, though, you need to see someone who specializes in this type of condition. I'm reasonably sure I have a presentation at home by an Australian surgeon who specializes in iliac artery endofibrosis. I'm at work right now and won't be home for another 11 hours or so, but I'll try to find it when I get home and post his name. Australian pro triathlete Belinda Granger had this surgery; I believe in Australia.

I had two synthetic (Dacron) grafts, one for each leg. No anti-rejection drugs ever. Any kind of surgery is a blow to your system, but the recovery was not as bad as one would think. Even with having my abdominals split open for the surgery, I was walking the dogs within a couple of weeks and riding on the road within a couple of months.
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
Thanks HeidiC. That article or link to it would be great. I think I went into my shell this last few years after they seriously 'scared me into submission'. Not once did I meet a doctor who was vaguely supportive and said 'I would like to try and help you'. The most positive I had was 'ill do it if you want me to but these are the risks and I won't know what I have til I open you up'.

I'm basically 'sht scared' to do anything. I've had other health issues in life and don't want to add to the problem. Yes lacking confidence big time. But the flip side is that being active makes me happy so isn't that most important?

Thanks again.

Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
"The majority of vascular surgeons are clueless about this condition in athletes"

I call Dr Cherry and get a referral.....Start there! Don't spin your wheels.......
Re: Illiac Artery Endofibrosis - I've got it. [Melchski] [ In reply to ]
Agreed, you should probably shoot an email to Dr. Cherry, as he likely knows the Australian vascular surgeons who are doing this surgery. I couldn't find the article I was looking for; I'll look further this weekend. I did find this one by a vascular surgeon in Sydney: http://journals.lww.com/...ndofibrosis.143.aspx.
Re: Illiac Artery Endofibrosis - I've got it. [HeidiC] [ In reply to ]
I've also just stumbled on this (it's very hard to find anything on the internet). I'm purely a cyclist and have also had quad issues for years that's recently progressed to a numb foot. I first noticed the problem around 2009 trying to do a short steep climb, and it's to the point now that I can't do any cycling on an incline, and the problem lasts for days after a ride. I won a stock time trial series in 2013, averaging a bit over 20 mph (short course, 10.8 miles with a few rollers). This year on the same course that's been shortened to 10 miles I am now down to 17.7 mph (from 18.8 in May-so it's getting worse quickly now).

I'd characterize it as the exact same feeling as you get when you are squatting for a while to look at a bottom shelf and stand up quickly, but I feel it in my quads. In the days after the ride I am not able to move my legs a few seconds after coming up one flight of stairs from the basement to the main level of the house. It feels basically like all of the blood suddenly drained out of my legs a few seconds after I ascend and I just can't move-like my legs are going to pass out?? Is that anything at all similar to what other people have experienced?? I've also had a problem with my left ankle for a few years, but maybe that's unrelated. I figured it might be compensation and that I'm no longer able to do a smooth controlled pedal stroke.

I've had so many tests, and they are all negative (blood work, rheumatologist). It makes me feel crazy and that I should be able to ride through it if I really wanted to. But I'm trying so hard! I've tried taking time off, interval training, long rides to ease into the season, more protein, changing diet....nothing ever works. I'm pretty depressed because cycling is really important to me (I cannot even keep up on team coffee rides anymore). I have been riding in a very aggressive position since at least 2009 on all rides; group rides, solo, TT training, etc. I used to flip the stem the first year, but haven't since then-I ride aggressively positioned 100% of the time (mostly because I was getting slower and slower and it helped me keep up on rides).

Is there any chance that I might have illiac artery endofibrosis even though I only ride 2,500-3,000 miles a year, generally (although I did hit 5,000 miles in 2010, generally it's closer to 3,000)? I am trying so hard!! Either I need to go on meds as a mental case, or it's something like this that wouldn't show up on normal lab tests. All the doctors I've seen compare me to the general sedentary American and don't take me seriously. They think my riding is sort of over the top, even though I'm at the low end compared to any one of my teammates or friends.

If it might be endofibrosis and only shows up when I'm cycling, how do I find a vascular surgeon who will take me seriously and knows how to do the testing? I live in Minnesota and could get to Mayo. If I could find out what's wrong and get back to even where I was just a few years ago, I'd be able to ride with my friends and socialize again. It would mean so much to me!

Thanks-I sure hope this thread isn't too old.

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