Readers Respond: Were You Diagnosed With Iliac Artery Endofibrosis?

Responses: 8

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. Share Your Story

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