ROADMAPS AND NEW PLACES The last few weeks have been life altering in many ways. Some of you have spoken with me in person and know what I am facing, some of you don’t. The amount of personal messages, texts and emails have been overwhelmingly positive and really helped to lift my spirits. I admittedly have been really struggling with the news. In the last couple of weeks there have been tears….and a lot of them. I have had a lot of people ask what is happening to me and I apologize to those of you whom I haven’t been able to answer yet. It’s been really difficult and I find myself at times simply breaking down emotionally as I struggle to understand what is going to happen to me. Up until recently I used work as a distractor but now that work is done there isn’t a distractor. And the moments of emotional idleness and a wandering medical mind have already started asking the “what if?” questions. I have moments of complete shock where I just can’t believe this is happening to me, and yet here I am, sitting in a hospital bed waiting to be released from my preoperative testing after having gone through one hell of an invasive procedure and now facing an even bigger challenge on Monday. The way I cope is in seeking refuge in the comfort of a wonderful boyfriend who has already endured so much this year. He is caring, and patient, and instinctively knows he has to leave the room when I have to pee in a bedpan. Yes, I made him leave which he was I think almost too happy to oblige. I also find comfort in writing about what is happening to me. If you don’t like details then please stop reading now. The reason I choose to share my story is that I really do need support as I go through these next few weeks and even more so, what is happening to me, can happen to others in our sport and I have made an active decision to help educate people about this disease to perhaps shed light on what is an extremely rare diagnosis amongst athletes. I have been diagnosed with a condition called External Iliac Arteriopathy or EIA. In a nutshell what happens in this condition is the artery that supplies your gluteus (aka junk in the trunk muscles), thigh, leg and foot muscles has scarred both from the inside and the outside. It produces a variety of symptoms and in it’s most severe form can lead to arterial clotting, tissue death, disability and high risk for amputation. The condition is also extremely painful in it’s severe form. The diagnosis is also thought to be exceptionally rare. It typically affects around three percent of all cyclists and endurance athletes. This is likely an underestimate after speaking with my vascular surgeon as the difficulty of diagnosing it probably leads to it being frequently missed. I do consider myself lucky in this respect. Of the handful of people written about in the literature it usually takes two or more years for people to get it correctly diagnosed. I diagnosed myself in less than 6 months. And yes, I diagnosed myself. That’s another reason why my specialty is amazing: primary care sports medicine physicians spend a lot of time studying the ailments that affect athletes and do so in great detail over the years of our training which sets us apart. EIA presents with symptoms that seem benign at first and almost bothersome. Pesky cramping, tightness in various muscles, spasms, or maybe a rough workout here and there but then it can progress. There are several factors that contribute to the disease but no one cause has been pinpointed. It is thought that when our hips are in repetitive extreme angles of flexion as in cycling that the artery can get kinked and then fibrosis and scarring sets up shop. The scarring does not permit expansion of the artery, which is necessary to support increased exertion, and if severe enough it does not support even simple metabolic demands of the living tissue. It literally suffocates the entire leg. In my case the fibrosis inside the vessel is so severe that I was informed today I have only 20-30% of blood flow remaining to my leg. It has created episodes of intense pain at rest and sitting and times where the weakness will makes simple things like lifting your leg to get into your car an issue. My ability to run more than a mile or to bike has been stripped from me as my leg becomes powerless and cramps severely less than ten minutes into a workout. Other contributing factors in EIA include overdeveloped inguinal ligaments and larger psoas muscle structure both of which tether the artery in an unfavorable way and necessitate further surgical intervention. So my next question after I diagnosed it was…..how do you fix it? Well, this is where there are no roadmaps to follow. There are vague messages sent when people tell you “we can ‘try’ to do this or this”. As a physician I can read between the lines. There are simply not enough cases to reliably determine what type of surgery consistently delivers the best results for people who have EIA. There is no roadmap to follow or patient care algorithm to reference. This is where a new path is being created, and I am well into this next chapter in my journey. Monday is going to be a hard day for me and I ask for your prayers. I will be heading to the operating room under the care of a surgeon whom is one of two experts in the nation familiar with the issue. The current plan is to cut out a large length of the artery in hopes of removing the scarred segment and replacing it with a graft material. My surgeon will also have to free the remaining artery from its attachments to the psoas muscle and sever my inguinal ligament to free up any compression on the artery. I am expected to have to stay in the hospital for most of the week before I will be released to go home. I am afraid. Pure and simple. There is a sense of helplessness I feel that is almost paralyzing and is a feeling that seems foreign to my repertoire of personality traits. Monday will be a big undertaking and I again ask for your prayers and support. Please keep Dan and I in mind as we try to make our way through these challenging circumstances. I have a lot of hopes and dreams and I think in some way this challenge was placed in my life to help me once again redefine myself and give me strength to achieve what I see on the horizon. I didn’t choose EIA but as I said earlier in the week EIA chose the wrong woman. Period.……..and Billy Collier you still can’t have my race wheels.
Posted on: Sat, 06 Dec 2014 03:23:23 +0000
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