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Readers Respond: Were You Diagnosed With Iliac Artery Endofibrosis?

Responses: 17

By

Updated June 22, 2010

Iliac artery endofibrosis, or arteriopathy, is an uncommon condition that most often occurs in cyclists. While rare, there is a growing body of research on this unusual condition and several treatment methods are commonly recommended. When I went through my own diagnosis and treatment, I wanted to learn more from the athletes who had been through this and surgeons who have treated the condition.

Have you had experience with endofibrosis? What treatment did you opt for? How are you doing today? Share your story, tips and advice with other readers and help spread the word about this rare and frustrating condition.

Cyclist turned triathlete

I was Cat 2 cyclist that experienced right thigh cramping and weakness at high intensity efforts which progressed to symptoms casually pedally down the bike path. After many Doctors/specialists I was able to direct my care and had an ABI and CT scan concluding occluding of my external iliac artery. Through lots of research I decided to go to Dr Cherry in VA who performed a patch synthetic patch repair 11/08. I developed similar symptoms 5/09 and found kinking of the femoral artery when hip was flexed past 90 degrees and had another graft repair 12/09. In 6/10 I developed calf pain in the same leg and had an arterial blood clot. Recently (2012) I am unable to do the extreme efforts but have completed 2 Ironmans with little symptoms(some foot numbness). Don't give up and seek an experienced specialist.
—Guest Sandy

frustrated 22 year old

I am a 22 year old top amateur cyclist. After about six months of watching my RPE go up (particularly in my left leg) while my power numbers went down, I started researching online and came across this website. After 3 months of nagging, I finally got the ABI tests I wanted and to all my Doc's surprise, I had a drop in pressure in my right vs my left. Riding slow isn't fun for me, for me cycling and sports is about pushing yourself to new heights, and tooling around slow doesn't do anything for me. There seems to be more negative experiences in regards to surgery than positive, what are your experiences? I'm very interested to talk to anyone who has anything to say. Todd
—Guest Todd

Mystery cause of Claudication

After a lifetime of high level sport (but neither cycling or riding) I developed symptoms of dull pain and limping, whenever I tried to do aerobic exercise with load or (it seemed) impact. My leg just stopped working. I was 40 years old. After almost exactly 10 years of referrals to neurosurgeons, muscular skeletal consultants and countless hours of physio, chiro, osteo and everything in between, I was finally referred yet another neuro surgeon who diagnosed claudication - almost always caused by vascular disease. He said he'd 'bet his house' that I didn't have vascular disease, but it appeared after a vascular CT scan that was the problem. After an angioplasty and stent to right iliac artery, I'm fixed, aged 51 BUT everyone's agreed that Endofibrosis is the most likely cause, although no-one can explain why. I hope this account prevents someone else going through 10 years of hell.
—Guest JB

second iliac artery surgery

I was about ten weeks out from competing in my second Ironman event when my leg went " wooden" during a 22 mile run. My local sports medicine doctors were of no help, so I went to the Ahdrews Sports Medicine Center in Birmingham, Alabama. Within two days, I was operated on by Dr. David Whitley for total occlusion of my right external iliac artery. I had a PTHE graft to bypass the occlusion and all went well. Two weeks ago or about 5 months post-op I was out running a ten mile run when my leg started feeling wooden again. One week later I was operated on again. This time they cut the graft in half to remove the new clot. They removed the old clotted artery and cut my Inguinal ligament to give the repaired graft a strighter path through my leg. Dr. Whitley and the Dr. Cherry that "Guest Pam" talked about consulted on my surgery protocal. I would like to here from anyone out there that has had the same problems. My email is tzuelke@msn.com
—Guest tim

Bilateral IAE

I had left iliac artery occlusion and had it repaired with a patch, the symptoms came back about 4 months later. I ended up having a synthetic graft on Feb 2011. Seems to be doing good. Then I had same symptoms on the right side, had graft on July 2011. After 6 weeks of nothing, my symptoms were as bad or worse. Had an angiogram to see what the problem was. The graft was too long and at 90 degree bend the blood flow was compromised. So I have just under gone my last surgery:). To correct the length of the graft. Touch base with me if you want to know how I am doing ( Pmaxwell1@cfl.rr.com). I will take 6 weeks off of cycling and running, but will be able to swim once the incision is healed and able to walk in a few days. I have a 1/2 ironman at the beginning of May2012, so that will determine what is happening. I am very confident that the right side will be as good as the left side. I did a lot of research with many physicians. I ended up with a Dr. Kenneth Cherry at the University of Virginia. Please contact
—Guest Pam

NHS uk

Exertional pain in one leg - can't walk or cycle uphill - have been passed around the NHS in UK for 6 years with no diagnosis (other than non-specific 'muscle imbalance' for which 'core stability' exercises didn't work). Only now am I being sent for vascular testing during/after exertion - except that the NHS has no idea which test to give me...) There are tight and/or hypertonic quads, adductors, hamstrings, iliopsoas, piriformis and a pelvic rotation/FLLD and a sciatic nerve compression (foot buzzing/numbness) - all in the painful leg - which becomes weak and in near-state of collapse during exertion. Does external iliac endofibrosis cause all that? I am fearful of being sent off on another 'red herring' loop-the-loop by the NHS. Can muscle ischemia - due to hypertonic muscle spasms - also cause a diminished pulse during/after exertion? If anybody could tell me, I'd be grateful.
—Guest mac

EIAE - Considering surgery - need advice

I have just bn diagnosed with EIAE in right leg when I run fast or up hills leg cramps up severely. Can't race anymore have had this for 5-6years as doctors thought it was sciatica. Really want to get it fixed surgically, but am a little scared as have heard the surgery has mixed results. Has anyone had the surgery? And was it worth it?
—Guest Jo Burkett

Greer

I was diagnosed with External Iliac Artery Endofibrosis finally after 6 years of searching for the solution down the wrong path with various specialsists. I eventually got put onto a vasuclar surgeon who recognised my problem. I am an elite triathlete and cylist and have been doing top level competition for 12 years. This problem started 6 years ago and i have been training with pain in the quadriceps during high intensity sessions when running or cycling. I will be having an operation soon. I would like to be in touch with athletes who have this condition just so as to get support and more of an understanding about it. Greer
—Guest Greer

Complete Occlusion of EIA

I was an amateur competitive cyclist for years. Recurrent weakness and pain in my right leg during training would resolve itself between training rides, and only remanifest during intense workouts. The problem failed to resolve itself after a race, and after an initial diagnosis of nerve compression at L4/5, a CT scan revealed complete occlusion of the right EIA. A synthetic graft reoccluded while cycling at a high intensity 4 months post-op, and a second repair reoccluded 10 months post-op while cross-country skiing. Both reocclusions seem to correlate activity intensity.
—Guest Rick

Endofibrosis

I am a 48 year old female triathlete. I struggled with left calf pain running and to a lesser extent left quad pain cycling and swimming for 4 years. My ABI was 0.18. I had a patch angioplasty 8 months ago and am now cycling better than ever and running symptom free. My surgeon has reassured me risk of dilatation is not that high based on their experience with repairing traumatic injuries to the iliofemoral system.
—Guest Jane

Recreational exerciser

I was diagnosed in 2001 and underwent a iliac arterial graft (made out of dacron). My symptoms were leg cramps during my runs. I always seemed to push through the pain (I just thought I was dehydrated or something). About half way through my run, it would feel better. This went on for several months until all of sudden it started to be very painful. After about 5 steps of running, I was literally stopped dead in my tracks and could hardly walk. This brought me to my doctor, who immediately referred me to a vacular surgeon at Mayo Clinic in Rochester, MN. I had ran a marathon in 2000 and was biking more than I ever had the summer when I started having problems. But I am in no way a professional athlete. I hate races! Anyway, I have had my graft for 8 years now and still run and bike. I notice some numbness in my foot when I do a longer run or bike ride. I was told I would have to have my graft replaced some day. I'm curious to know what to expect in the future.
—Guest Linda

endofibrosis of external iliac artery

I was a triathlete for 14 years. Final three years my right calf {running}, thigh {cycling} and groin {swimming]would cramp up. I researched and found the info on endofibrosis of the iliac artery, which was later diagnosed. I had an arterial bypass which took Seven hours, using two veins from my leg. the op was Jan 2008. I am now 45 (2009). I was told by my consultant not to ride a bike again, as narrowing of the left femoral artery was also found in the groin. Cycling could cause this to go the same way. I now run four/five times a week. My pace has slowed considerably as the artery rebuild has a reduced flow in comparison to the original before fibrosis. It is of a smaller diameter as my veins were small. Every time I run my right calf burns until it is warmed up. I could not run before op. My longest run is 1hour 45. Before op I ran 5.30min miles I now struggle to run 7.30min miles . I am hoping this will improve with perseverance(time will tell).
—Guest paul

Angioplasy lasted 3 years

I have been cycling since 1989 and was diagnosed with the same problem in my right leg in 2003. (Im 51,a woman)I almost stop cycling before I was diagnosed by Tim Noaks in Cape Town. After my first angioplasy it was like a miracle. I had painless cyclig for 3 years and then the problem started again.I had the same procedure done with the same amazing results. It lasted for another 3 years. Now I was told by the doctor that there is something inside the artery and this time it can't be corrected by means of an angioplasy (they have to operate) I was told by another doctor to stop cycling because of the risk of the operation.
—Guest Franci

Long term risk for surgery

I am a 44 year old cyclist who has suffered symptoms of EIAE in the left leg since 2005. I work in the paramedical field and thus had to self diagnose through a combination of clinical symptoms and investigative studies. Local doctors had not heard of the condition. I can cycle at a slow training pace (18-20 MPH) but suffer left leg pain and dysfunction at a pace replicating race conditions. I love competing in cycle races and was very upset when this was curtailed because of my problem. I had to decide between continuing to cycle slowly (very frustrating) or surgery (saphenous vein patch). I spoke with a number of vascular surgeons about the procedure and two professional triathletes who have had the surgery (1 success/1 failure). My mind was made up following advice from Dr Goof Schep (Netherlands). He warned about the potential for long term dilation at the operative site and strongly advised against surgery. So, at this stage it's a case of better the devil u know. Gil
—Gil64

Iliac Artery Angioplasy short lived

Hi, I am a semi-competitive cyclist in Johannesburg, South Africa. About 4 years ago I experienced the typical "numbing" and lack of power in my left leg, when cycling at high heart rates and effort. This presented itself more as a fatigue in the leg than a sharp pain. I seemed I was no longer responding to training, and feeling of over training then under training became a typical cycle. I consulted a Vascular surgeon who specialized in this sort of thing and agreed to a procedure of "stretching" the artery by means of an "angioplasy balloon". I underwent the procedure under local aneasthetic, the recovery was a short 2 weeks, followed by a 2 week period of very light spinning. The result was like night and day and I had 3 year period of pain free cycling. Over the last 6 months, however, the feelings of weakness and pain are returning. I am considering having a stent put in but am a little nervous as the death of Ryan Cox, our local hero, is on everyones mind.
—Guest Digby

Treated at Stanford

My right EIA had an ABI of .28 which is quite occluded. I had a vein patch in April of 2008 and the right leg seems to be doing well so far. I saw Dr. Jason Lee at Stanford's Vascular Clinic in Palo Alto, CA.
—Guest Liz

The experience of a triathlete

My experience started on 10 October 2006 when racing at the European duathlon championships I felt my left leg go 'wooden'. It passed, and I finished the race. But, the frequency and severity of the 'wooden' feelings increased. At first, only running, only at speed or up hill, but over time, all running, some cycling and occasionally swimming. I saw numerous sports doctors, physios, osteopaths to no good effect. The main diagnosis was poor core stability but the treatment manifestly didn't work as the condition got worse. Eventually, over two years after the initial problem, and after reading about external iliac endofibrosis on the internet, I was diagnosed. The entire length of my external iliac artery is blocked, quite unusual for an amateur triathlete. I am now waiting for surgery (I will have an artifical bypass). My advice: don't give up, if your problem is getting worse, don't keep seeing different physios, insist on a referral and tests to rule out vascular problems.
—Guest Francesca
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