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Readers Respond: Were You Diagnosed With Iliac Artery Endofibrosis?

Responses: 25

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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. Share Your Story

External Iliac Artery occlusion stent

In my early 30's I completed 2 NYC and 1 Boston marathons. I also regularly did 40 mile bike rides though I did not race. I was hit by a taxi in 1998 while riding - no serious injuries but lots of bruising and sore ribs. Soon thereafter my right leg started feeling "dead" and numb when I tried to run. I could not climb stairs without pain. Eventually someone checked the pulses in my ankles and determined that there was almost none on my right side. An angiogram revealed a significant occlusion of my right external iliac artery and I got a stent in 1999. It was good for almost 10 years. I was able to exercise normally, though by then mostly on the stationary bike. Then, in 2008 my symptoms came back - a "wooden" leg while walking and pain climbing stairs. I got angioplasty and another stent. All was good for 5 years. In July of 2013 my symptoms returned - the stents were severely clotted and blood flow restricted. I am now on blood thinners and not sure what is next.
—Guest ann m

Three options, or four?

As a top level amateur cyclist, 45 years old, I'd had some problems associated with old running injuries and over-use. Nothing that I couldn't tolerate or 'ride through'. But in the winter of 2012 I noticed that my right foot was colder than usual, and this continued through into the spring, and then the summer 30 degree centigrade (hot) weather didn't even stop this frozen feeling. My hip had been feeling 'slow' and I had a lot of deep tissue massage on glutes, hip flexor, ITB, calf, with little effect. My muscles in the right leg felt fatigued. Then, the day after a fantastic race, my leg hurt when I climbed the stairs. Not like any normal post race fatigue. I tried to race the next day and pulled up very suddenly after literally limping on the bike....intermittent claudication. Saw a surgeon yesterday. Option 1: do nothing, 2. Angioplasty, 3. Patch graft and then I told him about minimally invasive laparoscopic release. Research well. Choose better.
—mikebike.68

Femoral artery endofibrosis

Hi all... I'm a 40yo Cat 2 cyclist who had symptoms for three years before surgery. Unlike most people, my issue was with my femoral artery, not iliac (same artery, just further down). My condition was caused by severe kinking of the artery. I was operated on in September, 2012 by Dr. DeVirgilio at UCLA/Harbor (the nicest physician I have ever known) to remove the "extra" length of my femoral artery. I was off the bike for two months, but returned to training and racing in four months. However, it's now 6 months later and my symptoms have returned and seem to be getting worse. It'll take another few months of fighting my insurance company to get a repeat CTA, but the likely culprit is that the artery has rekinked or there's significant scar tissue in the artery following the surgery. I'm off the bike again and running a bit to maintain some fitness, but it sucks. I will update here when/if things get clearer. Best of luck to all...
—Guest Steve

surgery in less than 2 weeks

ex pro triathlete, elite runner. got to the point where I couldn't run for 5 minutes (at a crawling pace) without extreme pain. Took over 2 years (even with a self diagnosis) to get a doc to listen and treat. decreased abi (0.45) and abnormal CT only after activity. going for vein patch surgery in less than 2 weeks. very excited, however a little worried about the recovery. don't want to rush it.
—Guest chrissy

endofibrosis

hola otra vez, finalmente los resultados de mis pruebas (angiotac) determinaron que tenia un pseudoaneurisma en la union del by pass de dacron con la arteria femoral.( se habia desheco un punto) por lo que puede ser que una embolia en el gemelo me ha obstruido una arteria en el gemelo, esto se puede ver en la prueba. me he operado y todo ha salido bien, aunque sigo con el gemelo tocado. cuando ando se me cansa y estoy llendo a andar todos los dias a la espera de que mejore el riego en un futuro. un saludo y contactar conmigo en mi emali. mazitas@hotmail.com
—Guest mazitas@hotmail.com

recent endofibrosectomy

age group triathlete. started late in life - mid 40s. claudication symptoms started in 2008. went through the normal mill of test - muscular, skeletal, etc. had physio for 6 months, but they got fed up with me. family doc suggested an osteopath, who almost immediately identified pulse in left toes and went on to do abi test, showing 10% lower bp in left leg. how easy was it for the doc to do that test, compared to months of other humming and hawing. should be a standard test for lower leg pain occuring without trauma. anyway, piqued the surgeon's interest with some google research on endofibrosis. as far as i know, never been seen in that hospital, and new to the surgeon too. he did and endofibrosectomy of my left eia in july 2012. it's 6 weeks since the op and i have done a couple light jogs of 3km each. modest discomfort, but otherwise feels good. my surgeon researched and concluded that angioplasty would be temporary fix, and stent potentially dangerous in mobile area
—Guest joolz

operado con protesis dacron hace 10 años

hola, soy i un exciclista de 36 años de edad, hace 10 años sufri la obstruccion de la arteria iliaca, estuve seis meses con dolores al caminar o hacer deporte por lo que me someti a una angioplastia y me implantaron un stent que se tapo a los 2 meses mientras corria. finalmente me opere y me pusieron injerto de dacron que me ha permitido hacer deporte durante 10 años. aunque he tenido problemas ya que he perdido riego en el pie y gemelo de la pierna en varias ocasiones mientras realizaba alguna actividad deportiva. los medicos no saben porque me ha ocurrido y me gustaria saber si a alguien le a pasado. actualmente me molesta el gemelo al andar desde hace 15 dias y me estan realizando pruebas. si estais interesados en como me va este es mi correo. mazitas@hotmail.com desde España.
—Guest david

EIAE in British Columbia

I have been an age group triathlete and competitive cyclist for over 10 years. I began experiencing symptoms of right leg claudication (at the time it felt like painful cramping in my gluts, quads and calves). Worked with a physio for months as I was prepping for IMC, and between the 2 of us we diagnosed it as vascular related. I was lucky to see a vascular surgeon who was familiar with EIAE and had previously done repairs (she's now retired). I had the surgery in 2007 and opted for a bovine graft. The surgery and recovery are brutal. But at least I'm riding and training again. Still seems to be good but based on others experiences, I'm expecting to have to have it re-repaired at some point. I was 37 when I had the surgery and am 42 now. One point to take into consideration if you are thinking of the surgery is that the scar tissue in the abdomen can cause issues as well. Good luck to those thinking about it!
—Guest _Liz_

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

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Were You Diagnosed With Iliac Artery Endofibrosis?

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