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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Re: Chiari
Jan 28, 2009
Hi there,

the old timers are awakening!

It's been a long time since I've posted anything, and the main reason why is I just haven't been feeling good enough to do it. I've had a rough chiari journey over the last few months. After my initial decompression, everything looked good, but I was still getting faint chiari headaches, so my surgeon put me on a medicine called diamox, he said that I had hydrocephelis and the medicine would help. It gave me migranes and caused brain fluid to build up in the back of my head, ballooning out.

So my surgeon decided that I needed a vp shunt, which was my second surgery and is now protruding out the top on my head, whether it's working or not, I don''t know, but I do know that it took forever for the incision on my head to heal, and it still feels like if i smile too hard, I could split it open. Meanwhile, about two weeks after the surgery, the fluid build up was back, the doctors thought that the shunt may not be working or that there was an opening in the protective patch they put in during the first surgery. If it were the latter, they figured that it would seal itself up in time, but they wanted to take the extra pressure of the fluid build up off my head, so I went in to have a lumbar spinal tap.

Now, don't read this if you have a weak stomache, but they wanted to do the tap, and put in a catheter, and drain the fluid out of my head. After the first tap, the doctor could not get the tubes to stay in my back, so he did another tap, then another, then another, yes four spinal taps at one time! Needless to say, I was suffering from the nerve damage then, and I still feel the effects now. They drained the fluid out, sent me home, and about two weeks later, the fluid was back. So I got another CT scan and it was determined that there was a pin hole sized leak in the artificial patch they put in, so the reopened my first incision, yes another surgery, in order to close the leak.

I'm at home healing from that now, but I have a wierd feeling that this aint over. If anyone reading this has had this symptom, please let me know, because even my doctor hasn't heard this one before. I can tilt my head side to side and I feel fluid, like water, moving back and forth, it's as if everything's out my head, and it's filled half-way full of water, and I can swish it all around, my wife could even hear it swishing back and forth, it's the weirdest feeling.

That's my story, sorry for not writing sooner, and again, thanks for all the encouragement and support.


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