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Alone, the Walk is Longer

Posted Apr 09 2009 7:17pm
So I went to a new neurosurgeon last Wednesday. He wasn't dismissive but seemed to tire easily when listening to me discuss my symptoms at any length. I was somewhat disappointed in his lack of empathy or even expression but I guess he didn't become a NS to hold my hand. Anyway, he performed an exam and certainly agreed that I have notable balance issues. Everything was going alright until he used the phrase "high end of normal" in reference to my cerebellar tonsils being herniated 5-6mm. This makes me a little nervous because all of the Chiari experts agree; the "5mm rule" was created arbitrarily for screening purposes!! AH! There is no correlation between the size of the herniation and the severity of symptoms! But, as I said, he was not dismissive. At this point, that's certainly an improvement and I'll take it. He ordered a Cine MRI to study how the cerebrospinal fluid (CSF) is moving. So the good news? He didn't tell me to see a shrink and he wants to perform a test that could potentially give me some answers. The bad news? He doesn't have a base of Chiari knowledge that I am confident in. He also said that if the Cine MRI results are normal that I am, in his terms, "back at square one."

So... How do I feel about this? Not sure. Happy? Not exactly. Sad? Only that I have to go through this in the first place. Angry? Yea, I have a little bit of that going on. I'm angry that he can look at me, so desperate for relief, and tell me that for now he just wants me to "deal" with the symptoms and in response to not being able to drive or work told me "that it is a judgment call [on my part] whether or not to perform these tasks." I guess that will just have to be a satisfactory answer for my boss when work is getting harder each day, and I show up later all the time. But I guess the feeling that really has me caught up is fear. I'm terrified that this Cine MRI will reveal nothing abnormal and I really will be "back to square one." I don't think I can handle that. My greatest comfort in all of this is knowing that I am lucky enough to have found a diagnosis. If the Chiari isn't causing my symptoms then that great comfort is gone once again. I'm terrified that I will again have to bare the burden of questioning my sanity and trying to convince doctor after doctor that I am in serious trouble. I'm also terrified by the possible alternatives; Multiple Sclerosis? Undetected tumor? Maybe a Schwannoma? Or maybe it's some other mysterious and elusive condition that no one will find and I'll be like this for the rest of my life. The most terrifying scenario I can imagine is my health continuing to deteriorate until I cannot work, drive, or really function and the pain, nausea, and discomfort get so intense that life becomes intolerable.

Needless to say, I've been having a bad week. I just need some solid answers. I need that comfort. I feel that support is serious lacking in my life. Matt, as always, is right beside me but one person just isn't enough. Right now I feel like I'm walking a long dark road alone.
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