Login required to started new threads

Login required to post replies

Prev Next
Exercised Induced Arterial Endofibrosis
Quote | Reply
Here is an email from a friend who raced in Nor Cal for the last few years. I'm posting this in an attempt to find him some medical help as well as alert us to the sign of the problem that affected him recently. Something to definitely pay attention to.


Hello all -

I'm writing both to seek your help and to let you know about a little known cycling injury so that you can know the warning signs if it's happening to you.

As some of you may know, I wound up in the hospital with a pulmonary embolism several weeks ago. My embolism originated from a clot in my leg and ultimately lodged in my lungs. I'm better now, but the experience led the doctors to conduct a number of tests. After ruling out all of the typical causes, the doctors ordered a cat scan with radioactive contrast. The 3D model produced by this test is pretty amazing. You can see all of your veins and arteries. While reviewing this model, we found that my right common illiac artery has what looks like a "dent" or a "kink". This artery is located in the pelvis and supplies blood to the right leg (the left common illiac artery showed no damage). When in a typical cycling posture, the arteries in the pelvis can be subjected to extreme mechanical loads, leading to fibrosis that is visualized as a dent or a kink. An that's my diagnosis, Exercised Induced Arterial Endofibrosis.

Why am I telling you all of this? Quite simply, I'm casting a very wide net in order to find a doctor who might understand more about this condition and how it relates to cyclists. The doctor I've been working with essentially told me to give up cycling or run the risk of loosing a leg in 5 - 10 years. As a fellow cycling enthusiast, I'm sure you can imagine how devastated I was to be told I couldn't ride any more. Well, I started doing some Google searches on the topic. As it turns out, quite a number of cyclists, including some top pro's, have developed this condition and been treated successfully. This makes me think that my doctor just presented me with the simple solution without understanding how important cycling is in my life and thus trying to educate me on all of the options. That's where you come in. If you know of anyone in the medical profession or a cyclist who might have had this problem, please put me in contact with them. I have found a medical report published by a group in France who has conducted operations on over 300 cyclists who have had this condition and I will be reaching out to them as well.

I have so many questions about treatment options, posture adjustments on the bike, stretching and nutrition. The research I've done indicates that the primary cause is the repetitive stress in an aerodynamic position, but what does than mean? Does it mean that if you have a very vertical posture, you're okay. Could the damage caused by a very aggressive time trial position contribute more heavily to the overall damage than a climbing position? The literature eludes to possible other contributing factors without clearly defining their contribution. There are just so many question to ask.

My second reason for writing to you is to share my experience so that you can know the warning signs in case this happens to you. Beginning in 2008 I began experiencing cramps at the end of long races. They would occur when the races got hard on a hill climb. I think the first serious cramps occurred on the second lap at Copperopolis. The cramps were worse on hot days and especially at altitude. At Diamond Valley, an altitude of about 5,600 ft, I got dropped very early in the race and when I sprinted for the finish within my chase group, my legs completely locked. This became a recurring problem at most road races. Now I'm sure you're saying, "well, doesn't everyone get cramps once in a while and surely not everyone has this medical condition." You're right, but if you can't resolve reoccurring cramps through nutrition, hydration, and training, you might want to consider this as a possible source of the problem. Another sign is that your flat land power just isn't very good when compared with your hill climbing power. In my case, I've often wondered why I suck at time trials relative to my hill climbing capabilities. For me, the answer clearly was that I was shutting off more blood flow to my legs.

Stuart O'Grady also had this condition and described his problems in a 2001 article on Cycling news. The thing that amazed me is that 6 of his team mates also developed the condition: http://www.cyclingnews.com/riders/2002/ ... =ogrady021

Velo news also has an article that is pretty informative: http://www.velonews.com/article/13064

The French doctor report on the condition and treatments can be found at: http://www.belsurg.org/...oad/RBSS/feugier.pdf
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [AFM] [ In reply to ]
Quote | Reply
Friendly bump.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [AFM] [ In reply to ]
Quote | Reply
We have a vascular surgeon at our hospital who used to be a triathlete. I'll ask him about this next time I see him.

BTW, don't be afraid of CT contrast material (dye) - it's not radioactive. It's sticky as hell when you get it on your shoes, though.

-----
Over 4.5 years bike crash free.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [AFM] [ In reply to ]
Quote | Reply
Best of luck to the OP's friend. I would recommend that when he sees any surgeons in regards to this that he get more then one opinion and only deal with ones that have performed the surgery on athletes. You really will want to weigh out the risks and benefits. However, not having surgery for EIAE does not meant that you have to quit riding. It just means that your racing will be limited due to the pain that you will experience starting at a certain intensity. However, your experience with a blood clot could indicate that you have another underlying pathology (i.e.- atherosclerosis) that the doctors need to investigate and treat. EIAE is not typically associated with plaques or clots. So, hopefully you will get some better medical advice in follow ups and get on the path to great health.

As far as a doctor to recommend I would say to contact Dr. Cohn at the Vein Center at Savannah Vascular (Georgia) http://www.healthyvein.com/home.htm
He has dealt with a couple cases of cyclists with EIAE and is a cyclist himself so he has a special interest in the topic. Even if you are not in that part of the country I'm sure that he'd love to pass along some information and might know of a good colleague in your area to recommend.
Best of Luck!

Kevin Swanson, DPT, CSCS
February training camps in Southern CA... http://www.swancoaching.com/winterspringcamps.htm
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [AFM] [ In reply to ]
Quote | Reply
Interesting stuff - thanks for posting. Googled it and read some references. Difficult to know what the natural history is if left untreated.

One thing that needs mention is that arterial disease doesn't lead to pulmonary embolus as is implied by your friend's email. Rather, PE is due to clot on the venous side that breaks away and goes to the lungs. OTOH arterial clots, if they occur, travel downstream to the feet where they generally cause severe pain and ischemia.


Coach at KonaCoach Multisport
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [AFM] [ In reply to ]
Quote | Reply
AFM. Your friend seems to believe that the clots were formed by his endofibrosis. Is that certain?

He also correlates his muscle cramps to the condition...Yet the condition only exists on his right side and he indicates that both legs would cramp up.

I had pulmonary embolisms all summer and when it was finally diagnosed they couldn't find a cause, so I'm wondering as to the cause and whether this means I'll have a relapse after my 6 months on warfarin is over.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [jyeager] [ In reply to ]
Quote | Reply
In Reply To:
AFM. Your friend seems to believe that the clots were formed by his endofibrosis. Is that certain?

He also correlates his muscle cramps to the condition...Yet the condition only exists on his right side and he indicates that both legs would cramp up.

I had pulmonary embolisms all summer and when it was finally diagnosed they couldn't find a cause, so I'm wondering as to the cause and whether this means I'll have a relapse after my 6 months on warfarin is over.

Good questions - unfortunately I don't know the answers. I'll PM you with Ramon's email - I'm sure he would be happy to discuss in more detail.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [jyeager] [ In reply to ]
Quote | Reply
Just joined the forum.

The doctor seemed to relate the arterial condition to the clot in the vein, but I too miss the direct connection. Perhaps he made some mental jumps that weren't articulated. So that's on my list of questions for a follow up visit with someone who has more interest in resolving the problem than my current vascular doctor.

The cramping was indeed in both legs, which seems odd since we only saw the fibrosis in the right illiac artery. Perhaps the left cramped because it was overcompensating for the right??? Yet another question to resolve.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
ralarcon, there was recently another thread on this topic. In your research, can you also find out if this affects speedskaters, inline skates and XC skiers, all of who use very similar muscle groups under intense load. Or are these sports "free of this issue" on account of the butt flotating in space and not having the additional contact point with the saddle?

Also, it would be interesting to see if swimming and running help "keep the condition" at bay, vs cycling only....finally riding steep vs slack....my intuition says riding slack with a compressed hip angle and more acute range of motion might have a greater impact on causing this condition?
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
In Reply To:
Just joined the forum.

The doctor seemed to relate the arterial condition to the clot in the vein, but I too miss the direct connection. Perhaps he made some mental jumps that weren't articulated. So that's on my list of questions for a follow up visit with someone who has more interest in resolving the problem than my current vascular doctor.

The cramping was indeed in both legs, which seems odd since we only saw the fibrosis in the right illiac artery. Perhaps the left cramped because it was overcompensating for the right??? Yet another question to resolve.


This will be an interesting discussion and I really want to know how this plays out for you. I am concerned though that you and/or your Doctor may have jumped to an unwarranted conclusion. Your arterial condition could be asymptomatic. You mentioned leg cramping and flat-land performance being sub-par to climbing performance.
There are many other causes of both, especially since you did NOT complain of the primary symptom of your arterial condition...namely numbness or weakness in one leg alone.

If that condition does eventually need treatment (and it may never), then there are treatment options that will let you keep cycling. I really don't think that you should accept your Dr's pronouncement there.

I am wondering if your leg cramps weren't from one of the run-of-the-mill causes...and even your flat land performance vs. your climbing performance could be simply explained by being light. A lighter athlete will have little to no advantage on the flats but will really shine up hills. How much do you weigh?

Can I ask how old you are? What level do you compete at? Give me a recent best performance for a time trial as an example.

One of the factors here is that DVT/PE is VERY rare in youngish athletes who haven't spent 8+ hours on an airplane or had recent surgery or a genetic clotting disorder. It's rare enough that your Dr. will be likely to come to an irrational conclusion regarding the cause.

For instance in my case I presented with PE in the spring and it wasn't diagnosed until the fall. During my 3rd Dr. visit for shortness of breath the Dr. finally ran a full blood panel and found I had no testosterone. For whatever reason I gave out. He prescribed HRT and I felt better in many ways, just not my breathing.
A visit or two later we found the PE. during my hospital stay, the hematologist that was working my case theorized that the HRT caused the clots and still holds to that theory even though I explained that the HRT didn't start until AFTER I had my DVT/PE onset! Basic logic is being disregarded by the Dr. simply because DVT is so rare in cases like mine and yours.


You also need to consider that your arterial condition is so rare that your Dr. (and others) won't be able to know anything about how you can avoid symptoms with bike adjustment and other simple mitigating steps. You'll have to figure this out on your own.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
i think the arterial condition was an incidental finding during the CT Angiogram.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [AFM] [ In reply to ]
Quote | Reply
I was diagnosed with exercise induced arterial endofibrosis in my left external iliac artery in october and had vein patch angioplasty in november. As of now I have picked up training again. Before having surgery, my condition had worsened to the point I could do no more than jogging at 130 bpm before experiencing symptoms.
It was a very sudden onslaught of symptoms - I did a great duathlon race on sep 1 2007, then one week later got a serious cramp in my left leg during a 10K run. After that it gradually became worse.
I live in Finland, so there may not be a point recommending my surgeon. Anyway, I was the first case hed encountered.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
I should have chimed in sooner, but I wanted to find out as much as I could from my doctors and get all the necessary tests done. Here's where things stand now.

The clotting was never it my arteries, only the veins, hence the PE instead of a clot getting stuck in my leg. I'm now convinced that the clotting was related more to hip inflammation from kicking 100 soccer balls at my son's soccer practice, followed by sitting all day at work the next day. Of course, the tight hip muscles and dehydration associated with cycling didn't help, but those were secondary factors. I'm on blood thinners for now, but I think that avoiding inflamation and sitting in a tight hip position will protect me from future PE's once I'm off the blood thinners.

Now on to the iliac artery. I've tried to sort through the artery issue with Dr. Olcott. Actually, Olcott isn't seeing many patients these days. I did meet him, but Dr. Jason T. Lee appears to be being mentored by him while Dr. Olcott focuses on teaching. They did a CT and found some visible damage to my right external iliac artery. It looked to be in early stage though. In order to get a baseline, we followed up with the on-bike stress test. It turned out that the blood pressure in my right ankle is only 77% (ABI = 84) of what it should be after cycling all out for 10 minutes. That was expected. More surprisingly though, my left ankle was only at 57% (ABI = 63). Remember, we didn't see any damage on the left side show up on the CT. So where did we leave it? For now, we opted against surgery because my symptoms only really show up under extreme efforts such as the finishing climb at races. Besides, there's always a risk with surgery and I'm going to try some other approaches first.

The changes include a much more upright position, shorter cranks, no caffeine, more stretching, and good hydration. Hopefully these can arrest further progression of the disease. I don't think those actions will allow be to regain my competitive form though, so I'm resorting to more extreme changes. This one came to me after trying to get back into racing. I was fine on the first lap, but at the finish of the second lap, the cramping started to happen again on the climb. The cramping is primarily in the quads, so it dawned on me, if blood flow to the quads is limited, can I shift the load to other muscles and thus prevent cramping? That has led me to try the mid-sole cleat position. My theory is that by reducing the blood requirements of the calf muscles, which draw from the same supply as the quads, while also shifting more load to the glutes, which draw from a completely different network, I should have a better chance of not cramping. I just started trying this a few weeks ago and haven't really pushed it up until late last week when I finally got to see my bike fitter in order to dial in the position. I tried the E 1/2/3 crit at Menlo Park this Sunday, but was about to get dropped before I flatted. That was tough! I stuck around though and did the 35+ 3/4 race. I was able to stay at the front the entire race with no problems. I've got more adapting to do, but we'll see how things go this week. I plan on doing some 20 minute power tests.

I've read the blog of Joe Freil about the mid-sole cleat position. What do people think about this solution as being a possible way to mitigate the effect of external iliac problems?
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
Very interesting "theory". Don't know if this will help, but worth a try since there are several studies showing midsole cleat positioning appears to be effective with minimal power loss.

Unfortunately, the gastrocnemius is only fed via the small sural arteries. Curious if this will have any effect? I kinda' doubt it though.

____________________________________
Fatigue is biochemical, not biomechanical.
- Andrew Coggan, PhD
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [rroof] [ In reply to ]
Quote | Reply
I could swear their was a US based cycling pro who had this, or something similar a few years ago. Pretty sure he had surgery to correct it. I though it was covered by Velonews.

Styrrell
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [rroof] [ In reply to ]
Quote | Reply
Friel seems to believe that you can actually generate more power. That's not my main motivation, but would of course be a welcome thing.

So far, I do feel like I'm using my glutes more than I used to while seated. While standing, I can really feel the difference in loading depending on how far forward I lean.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
Since your blood supply is cut off specifically by the cycling position (my assumption) would it be beneficial to stand up out of the saddle periodically every minute or two?
I know in a TT or criterium you will typically stay seated the whole time, but as you do this your power output is declining due to decreased blood flow to the legs (apparently both legs are affected based on your last post). Is the blood supply increased significantly when you stand out of the saddle? I assume this is the case since you mentioned feeling better when climbing and intuition tells me your affected arteries open up more when standing.
It would look weird, but how about every lap in your next crit you stand up along the back stretch for 10 revolutions?
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
I think Stuart O'grady had something similar (I was thinking US but AUS is pretty close for an artical 7 years ago).

http://www.velonews.com/article/1904

Styrrell
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [jyeager] [ In reply to ]
Quote | Reply
Standing doesn't necessarily help unless you are coasting. The arteries do open up, but the demand goes up when you stand. Typically, I stand when responding to a surge, so the demands are high then too.

My solution is to have a very upright position while in the saddle. I'm using a 17 degree rise with several spacers. Really, you only need to get low when your nose is in the wind. When you want to corner, you bend your elbows a little more in order to lower your center of gravity.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [smtyrrell99] [ In reply to ]
Quote | Reply
Yes, that's the first article I found on the topic a few months ago.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [rroof] [ In reply to ]
Quote | Reply
I've been lurking on this site for years but finally decided to respond after reading this post. I was a Category 1 racer for about 12 years, and due to this same condition, had my last race in April of 2004. I always had issues in time trials with my left leg and loss of power. The problem soon starting lurking into my racing as well. The last three years racing were progressively worse and I stopped doing TT's all together. Then it got to the point of getting dropped in crits, then road races.. I tried everything, thinking it was sciatica strained muscles, lack of drinking (due to cramping in lower extremities).

When I started training with an SRM it became very obvious there were big problems. My tempo wattage 1.5hr-2hrs at 160-165hr was about 330watts. In short TT's once I got my HR above threshold my wattage would start dropping and then I would have a 20k with a 310 avg wattage. Same thing would happen in races if the climbers got too excited and the bottom of the climb and I would have to go into the red to keep up.

After reading up on Stuart O'Grady and talking to a few guys on the circuit who had been diagnosed, I contacted my vascular surgeon and begin the expensive process of trying to find out what was wrong.

I got the protocol from Stuart O'Grady's website and went in with my trainer and bike. I did a ramp test and did the ankle/brachial index test. A normal ratio is 110% ankle to elbow (brachial) at rest and about 85% at full exertion/failure. Mine leg tested normal my left leg tested at 28%. The doc says "obviously we have a problem". I did an MRA which unfortunately due to years or endurance exercise only showed, at least in the docs eyes, overdeveloped arteries. The tests cannot differienate the thickening (scarring) of the arterial wall which is the ultimate result of the kinking.

According to studies at the time, most of which were in french, the occurance appears in the left leg 97% of the time. The culprit is the external illiac artery. This artery is attached to the psoas muscle. and can get kinked depending on your morphology. Most cases are in tall people like myself 6'3 or small muscular riders like O'grady. But I've known a few guys who have had it and they look like Sastre. So go figure.

I went to specialist all over several of whom were triathletes or cyclists. They all said the same thing. "We are used to seeing diseased arteries and yours look fine. We know there is a problem but we don't want to just rush in there and start cutting." The guy who did understand the problem and was willing to do it was Dr Kenneth Cherry who I believe is still at UVA medical. He used to be head of vascular at Mayo (no slouch). He's done more of these surgeries than anyone else in this country.

The next hurdle was one I didn't overcome. Insurance! My company determined it to be unnecessary. I fought with them for a year and half and tried some different approaches, but have ultimately given up the bike. I lurk on her because I'm still a tech geek and I run a little, plus I'm still a cycling fan.

The reason I'm sharing this story is that I'm happy to be a resource for anyone dealing with the same issue. I spent thousands of dollars to have every test done known to man and spent hours reseraching the issue and would love to be able to help anyone save money or frustration by taking the time to talk with them.

Heath



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp February 25-26, 2020 A2 Wind Tunnel
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [smtyrrell99] [ In reply to ]
Quote | Reply
In Reply To:
I could swear their was a US based cycling pro who had this, or something similar a few years ago. Pretty sure he had surgery to correct it. I though it was covered by Velonews.

Styrrell
Derek Bouchard-Hall. He had the surgury came back and won crit nationals and then the condition re-occurred. He told me to stop cycling that the surgery was painful and not worth it. Dr.Cherry diagnosed him but did not do the surgery. Cherry said that when he had his surgery the doc that did it did not cut the fascia binding the artery to the psoas which is the primary cause of the issue.



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp February 25-26, 2020 A2 Wind Tunnel
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [Ex-cyclist] [ In reply to ]
Quote | Reply
That sounds very similar to my experience. Legs always feel like the limiting factor in TT's. Power is much higher in the more upright climbing position. The cramps usually happen when the climbers start hitting it. I can ride at threshold, but if I go too much over it to respond to surges, I pay the price.

One thing is for sure, more research on prevention and treatment of the condition needs to be done. In talking with my surgeon at Stanford, we was quite clear about the relative lack of studies.

Sorry to hear that insurance didn't help you out. I'm more fortunate in that my plan would pay if I decided to have the operation. However, there's risk with any surgery, so I'd like to try some other strategies first. I've got a few races on my near term calendar, so I'll let you know if the mid-sole cleat position helps out at all. I don't expect the problem will go away, but hopefully, combined with positional changes, I can arrest the progression of the disease and stop the cramping.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [Ex-cyclist] [ In reply to ]
Quote | Reply
I've heard from others that the surgery is painful, but if you don't try to be macho and actually take the pain meds, you'll actually recover quite quickly.

I wonder why Derek's surgeon didn't release the fascia binding the artery to the psoas. Hypothetically, had his surgeon done this and had it kept the condition from recurring, do you think Derek's recommendation would be different?

I wonder how much, if any, benefit you can get from stretching the heck out of the psoas and all the surrounding structures.
Quote Reply
Re: Exercised Induced Arterial Endofibrosis [ralarcon] [ In reply to ]
Quote | Reply
Some stretching may help. It did seem to alleviate some of the the issue occasionally. I can't speak for why the surgeon didn't do this. He probably felt like it wasn't necessary despite an experienced surgeon telling him what to do. Of course that may be the answer there.. He may have "known" better than Dr.Cherry.

I still ride when the mood strikes me and running doesn't seem to bother it as much. However with the scarring on the artery hard efforts make it flair up. I really have to warm up well and be very aware of my start speeds in 5k's for example.

I would recommend a vigorous warmup before doing any crits. I would often sit on the trainer doing efforts for about 45min to an hour and hit the line in a full sweat. It is good to go ahead and flush the capilaries with blood and get them fully opened up. Before it got too bad to race I would just look at my watch, I knew if I got through the first 15min that it would settle down and I would be able to survive.

The surgery is very invasive, as they have to cut through several muscle walls to get to it. You'll be in bed for about 2 week and then walking around pretty well after about 4 then after 6 weeks you can pretty much go back to normal training again.

PM me and I'll give you my e-mail. I'll be happy to shed any light on this that I can.

Heath



Heath Dotson
HD Coaching:Website |Twitter: 140 Characters or Less|Facebook:Follow us on Facebook
AeroCamp February 25-26, 2020 A2 Wind Tunnel
Quote Reply

Prev Next