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Brain & Nervous System Disorders Message Board

Brain & Nervous System Disorders Board Index

Hi Munch~

I can relate to what your saying. I had headaches my whole life and when my leg issues began and I started going to Dr's to find out the cause, I didn't think my headaches were related and didn't even mention them. The Drs at first thought I had MS and did a lumbar puncture and this was what put my headaches in full motion. Before the LP, I could take tylenol for relief, now, not even narcotics relieve my pain.

The things we experience are difficult to explain because others who don't have chiari don't experience the things we do. Water rushing in your head sounds like a chiari thing. The CFS fluid builds up in our heads causing pressure so any weird symptoms you experience is expected.

When my journey bgan with Dr's almost 2 years ago I went to my 1st neurologist in hopes that FINALLY I would get help. But instead, he told me to go see a therepist. I was furious and I never went back. I did find another neurologist and he was better but he ordered my MRI and totally missed my herniation when he did look at it. When I found it myself, he did opologize for overlooking it but also told me because of the size of my herniation, no one around here would touch me.

Also, my own PC told me that since no tests were showing anything, that in the end, I would probobly find out it was sress causing my symptoms. Thats an unexceptable diagnosis as far as I'm concerned. So at this point, I cancelled all my Dr's appointments that were sceduled and went to a top chiari specialist. It was there that my symptoms were aknowleged. It was the best thing I ever did.

So just be aware that going to someone who doesn't know chiari, you may have this tonsillar ectopia minimized and be told this can't be causing your symptoms. But it most certainly can. My advice is to skip that whole process and go straight to the top. But to keep your regular Dr in the loop because you may need him in the future.

Getting the help we need with this condition is truely up to us. We really can't put our health in the Drs hands and hope they will help us get where we need to go. We have to be our own advocate at this point.

We are all here for you!!


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