Let's get physical...

Friday, September 21, 2007

Okay, so the brain surgery is not as out of the blue as it may seem to readers who haven't "known" me for very long. Let me explain...

In late 2005 I had a string of nasty headaches and started having an eye problem where my eyes would dart side to side or up and down in a truly obnoxious way (nystagmus). I went to an opthamologist who did an MRI with the concern that it might be an optical nerve problem or something as serious as Multiple Sclerosis. Thankfully the MRI did not show multiple sclerosis, but it did show a problem.

When my skull formed, the opening to the spinal canal (the foramen magnum) formed improperly, and consequently, there's not enough room for the bottom part of my brain (cerebellum). So over time, or possibly since birth, my brain has sort of started sagging into my spinal canal. The official name is Arnold Chairi (key-are-ee) Malformation, type 1. A set of MRIs in February also showed a possible, but unconfirmed syrinx (like a spongy growth of spinal fluid (I guess that's the best way to explain it, Sherri, butt in and correct me if I'm wrong)) which produced a diagnosis of Syringomyelia (sear-een-go-my-elia).

What does this mean? For one, I have a lot of headaches and virtually none of them respond to any treatment. Two, I have a lot of other little problems from the fact that my brain is literally squished in my head. These include, but are not limited to, dizziness, nausea, eye problems, coordination problems and a few others. The problems that lead me to go back to the neurologist this time were an increase in the headaches, an increase in pain (the addition of very sharp head pain to the already constant dull pain) and some coordination and sensation problems in my arms. When I went to the neurologist he did a standard exam and when he hit my left knee it flew in the air like a rocket being shot off the ground. Ditto with my left arm (I literally almost hit myself in the face and the doctor found it highly amusing to continue to hit the same spot and watch my arm fly close to my face each time). My right side was normal, and it's not necessarily the fact that this is unilateral that is the problem, it's the fact that my reflexes are hyperactive in the first place. Apparently this is bad, bad enough that my anti-surgery neurologist asked me if I was ready for surgery yet. Um, let's file that under the never-going-to-be-ready category. Never.

So, I'm having a new MRI on Monday and then another appointment with my neurologist the following Monday where he anticipates giving me a referral to the neurosurgeon with the recommendation of decompression surgery. The decompression involves removing a small piece of the bone in the skull (the doctor said it would be the size of his thumb) and depending upon the severity they can leave it at that, or they can cut through the lining of the brain (the dura) and put on a patch (I think it's made from cow or something like that) to give even more room.

Nothing is said or done yet and I'm trying to get a second opinion with a specialist lined up, but The University of Southern California is the most terribly horrible medical institution I've ever dealt with and more than a month after faxing my MRI request I still have nothing to show for it. I'm pretty sure it's time to threaten legal action for withholding medical charts. But when I do get it lined up, I have a doctor in Chicago and one in Alabama I'm looking into.

So yes, it is a relatively minor brain surgery as compared to other brain surgeries, but it will involve physical therapy later for the neck muscles being severed, a lot of pain and a lot of cajones that I do not possess. Speaking of cajones, or things in that area, I also have a monstrous UTI/Kidney Infection and I might die of that before I die of my brain exploding out of the back of my head. In the end, I'm not really sure which one I'd rather have be the end of me, but whichever one it is, I sure wish it would hurry the hell up.

So now you're in the know, or at least as much as I am, which often is not very much at all.


Anonymous said...

Wow! Sounds like you are getting a lot of test and opinions. That is good. To me, any surgery is scary. And on the brain is extra scary. You sound pretty calm overall, so keep up the good attitude!

I get migraines and can't imagine headaches that don't respond to treatment! I'd be a total BITCH all.the.time. Wouldn't even have time to blog, I'd be bitchin' so much. So sounds like you are functioning pretty well!

I wish you all the best as this goes forward and will keep you in my thoughts.

kim-d said...

Okay, Katie, I'm doing the one-two punch--CB and here. I am so worried about you I can't even begin to tell you. Your kidney stuff is just too familiar to me. Not to minimize your brain...MY brain can't quite wrap around that yet, and I know the whole background. For right now, though, I just can't get past your kidneys. And blood where it shouldn't be. One word. Nephrologist. Don't mess with this. Please.

Liz said...

So NOW I get it. Overflowing Brain. Got it. I read the about portion a few times but never really understood. hmmm...

Okay, back to feaking-the-hell-out!

Anonymous said...


I would recommend not getting the cow's heart (bovine pericardium). I know that Dr. Frim uses a person's own tissue for a patch. I say this with great experience (Kara) and wish things could have been done differently for her in the beginning. Hey I didn't need to but in because you did an excellent job of explaining everything :-) I use to have trouble with the corect names for Kara's surgeries and then I found some great info on www.conquerchiari.com and for decompression surgery they do a laminectomy, duraplasty, and a craniectomy.

Take care, Sherri