Sunday, July 15, 2007

Diagnosis & Research

I met with the neurosurgeon on July 6th. Having spent almost every waking moment doing internet research, I was confident that he wouldn't recommend surgery. (Based on the MRI report I was 3-4mm and having spent most of my life convincing myself that my symptoms didn't actually exist, I didn't think my symptoms were that bad.)

I was the first appointment of the day and yet I waited about 30 minutes before the doctor came in. He's a young doctor and new to their practice. He came in, did an evaluation, and then asked if I'd brought anyone with me. Up until that point it hadn't even occurred to me TO bring someone with me. My husband was at work as was the rest of my family. I was certain he wasn't going to recommend surgery and even if he had...I'm the one person in my family that can handle blood, guts, and medical stuff.

He took me back to his office and showed me my MRI film. Let's just say it looks a little more significant than the report made it out to be. He recommended surgery. Since I hadn't really thought this was the route I'd be heading down, I didn't feel accurately prepared. I asked the questions that popped into my head.

Next steps include an MRI of my head (the original MRI was just of my cervical spine). Based on my later research, I'm also asking for an MRI of my entire spine. This is to give us a baseline so that we can monitor closely post-op. I also want it to see what parts of my brain have been affected already (this will give me confidence that my symptoms have been all in my head - literally!) After the MRI, he's prepared to do surgery.

I left the appointment and faced the biggest challenge thus far - tell my husband and family that I need to have brain surgery. I debated over who to call first. I picked the husband and called to tell him at work. He had a lot of questions, some that I could answer, some that I went home to research. Then I called my mom and did the same - she wanted me to take everything to the chiropractor immediately. So I did. (How happy was I that I was on vacation and that the chiropractor takes walk-ins?)

The chiropractor asked a lot of good questions - Is the surgery really necessary? Is it really necessary right now? What happens if I don't have surgery? Again I went home to do more research. That was just a week ago, but it feels like a lifetime.

I stumbled across The Chiari Institute in New York's website with all of the informative videos - that answered a LOT of questions. It made me comfortable with the fact that I should have surgery in the near future before I develop some of the more severe symptoms. My history indicates that I will keep getting more severe symptoms as time progresses and the younger you are, the better you handle and recover from surgery. In looking at the success of the surgeries, it looks like the move advanced your symptoms, the less likely they are reversed by surgery.

Now I'm just waiting for approval by my insurance for the brain MRI (this is taking much longer than the first time - I don't think it's my insurance, but the doctor's office that is delaying this process - I need to start hounding them to get the ball rolling).

Once I get the MRI results back, it will be time to interview neurosurgeons and get additional opinions on whether or not I need the surgery. Through my research I seem lucky to have a NS that wants me to have the surgery without trying prolonging the inevitable. My challenge is that he is young and thus less experienced. Few doctors are experienced in Chiari, so this doesn't automatically disqualify him. I just want to find someone familiar with Chiari and have them evaluate me.

It seems that the big hubs for experienced Chiari surgeons are at The Chiari Institute in NY, in the mid-west, or at the Mayo Clinic in Arizona. I'm obviously willing to travel to get the best care, but because I'll be in recovery for so long after surgery, travel will add an additional expense and stress that I'd like to avoid if I can. The top neurosurgeon at UCLA Medical Center in Santa Monica, CA has a subspecialty in Chiari! That was a great find! Additionally, I have a friend who's father is a retired orthopedic surgeon that referred me to one of his neurosurgeon friends at UCI Medical Center that has experience with pediatric cases Chiari. After I get the brain MRI, I'll make appointments with both the UCLA and UCI neurosurgeons and see what their evaluations are.

Wish me luck!

5 comments:

Stacey said...

You said that it is better to get surgery when you are younger and before symptoms get worse? My neurologist told me 3 years ago when I first found out that I don't need to worry about it because I do not have any symptoms at all.
I was told that you are born with it and since I was 20 and had never had any symptoms before that I shouldn't worry about doing any kind of surgery unless I develop symptoms or anything starts to bother me.
I went to visit the doctor that will be actually performing my surgery when I am to get it done in the future and he wasn't in any hurry to do it now either....

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This is just my story of my experience with Chiari. Until I was diagnosed, I'd never heard of it, and I just want more people to be aware of it. I'm not a doctor, so don't quote me on any of this stuff - k? If you are looking for information about Chiari Malformation, a lot of the more informative posts are the older ones.