Thursday, May 23, 2013

Endofibrosis stenosis diagnosis

That's a lot of sis's

Just one month ago I wouldn't have had any clue of their meaning. However, now I do because it's been a few weeks since medical professionals have put those names to the issues I have been having on the bike, especially in the last year. Bare with me as this is all stuff I learned just in the last few weeks but what this means is I have narrowing (stenosis) in my left iliac artery, likely caused by endofibrosis. Endofibrosis is basically a build up on the outside of the artery. It builds up protect itself from the constant un-natural kinking that the iliac goes through when cycling. Particularly cycling in aggressive aero positions. This build up is good for protecting my artery, but bad for the blood headed to my poor left leg. The more build up, the more the artery is restricted from expanding to meet the blood flow needs of hungry muscles. This thing is actually fairly common in bike racers, yet somehow it flies under the radar. Someone threw out a figure that 20% of pro tour level cycling have or had this condition. I don't know that it's true, but now that I have had to do the research and pay attention, there is a decent sized list of domestic racers I race with or used to race with that have had the condition. Some of you may have heard of it as the "dead leg syndrome".

Now it seems there is some grey area. Determining how long this has been going on is one of those areas. I suspect it has been going on for a while. I recall back in 2008 people starting to see a noticable difference in the size of my legs. I didn't think much of it cause I was still doing ok on the bike. Also, it was a little hard for me to pinpoint the symptoms I think because the condition in my left leg has been degrading gradually over time and my body just came to recognize this as my limit. It took a while for the condition to get bad enough for me to notice what wasn't hurting. Last fall I felt like I just couldn't push the pedals. Something felt missing and when I really tuned in it felt is if there was something off balance. That's as far as I could nail things down at that time. Then this spring getting out for the first bit of hard riding with only fitness from indoor riding, things were very noticeable. It was as close as I have been to real "dead leg". I can only describe the feeling as suffocation. My left hip/groin area felt numb and tight and my left thigh would just burn. My left leg would be absolutely pinned and my right would be maybe at tempo. I'd have no choice but to slow down. But thing is, it felt normal. The body adapts to the conditions I guess, only I was just going slower and slower and slower as the condition worsened over the years. Now I can connect the dots and see back through the years and many un explained symptoms seem to be lining up with this. The size difference between legs is likely in part due to the lower leg just not getting blood. My lower back problems are focused on the right side (the side that works with the left leg) and that muscle is over sized and over worked from trying to make up for what the leg isn't doing. My left foot that goes numb is likely not because my shoe is strapped too tight as I usually determine. And there's the funny numb feeling in my left hip area that I have had for years and years.

Quantifying deficit is another grey area. I did an ABI test, which is where they measure blood pressure in all limbs at rest and exertion. This was significantly off. I wish I could remember the numbers. I then had an MRA that showed a pretty dim and narrow flow of blood down to my left leg as compared to a nice bright and thick flow down my right.

Naming the causes is a real big grey area it seems. In my case the concern is how much worse will it get if I were to never touch a bicycle again and remain naturally on foot for the rest of my days? How much worse if I take up RAAM? It is the acute kinking of the artery that causes this, but it seems some people are more prone to the problems than others. Some people can spend their whole lives riding in absurd time trial postions and be totally fine, while other people do a couple years of triathlon and the condition progresses to the point the walking up the stairs is a problem and then go back in for the other leg too.

For me the biggest grey area is with the solutions. This is not a health risk for me and surgery is the fix. I can be average joe just fine. I can even go on racing with the limitation that I currently have just fine. I managed ok last fall and during a period last summer even with the condition. Of course nobody can tell me if it will get worse and when. I could have surgery and return to my abilities from 6-7 years ago that are, at the worst, well beyond the best I have managed at any point in the last couple years. That would be nice. Or, I could have the surgery and, like many folks I talk to, return at about 75-80%. I attribute that to the body needing time to balance back out. Things adapt around this condition and they have to adapt back out of it. Or, I could have the surgery and also, like a few folks I've read about, have a re-occurrence of the condition and have surgery again. Of course, the worst case scenario, with any surgery, for anything, is major health risks from being cut open. These seem minimal in these days of modern medicine, but none-the-less a concern. People have died from all kinds of surgery, but many, many people die from crashing cars and I don't seem to mind hopping in the car to get to a bike race.

My thinking on the whole thing now is mostly concerned with post-cycling. I would really, really like to get back to previous levels on the bike and race the rest of my career, achieve my goals and all that. However, when I'm done with all that I would like to be a recreational athlete. Probably a runner. I can go out and enjoy running through the woods no matter how fast or slow I'm going, but I would like to be able to do so without a major hindrance. Especially a hindrance on one side only. I'm sure I will want to compete on some level also.

I have not been able to make a clear decision yet, but as you can probably see from the above text, subconsciously I have definitely been leaning toward having the treatment done. In the mean time I need to find the motivation to stay on the bike because I will be racing this fall either way and I am capable of doing ok even with the condition as long as I can keep it out of my head. I have been riding and racing the MTB a bit and I think that is the route I will go for the next few months. At least on the MTB I can have fun and make up in the techy stuff a little of what my legs won't do.

I wish I had better news, but hey at least it got me to write again.


  1. I can go out and enjoy running through the woods no matter how fast or slow I'm going, but I would like to be able to do so without a major hindrance.


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