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Help, does anyone know what this is

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Unread 11-19-2012, 09:00 PM   #1
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Default Help, does anyone know what this is


Three years ago I passed out and finally went to the Dr. I had sever papilledema and was diagnosed with pseudo tumor Cerebri. I was also diagnosed with Chiari Malformation. An LP was not done because of the Chiari. I was started on diamoxx an after about a year the papilledema was resolved, but all of my symptoms were still there. We had to switch insurances and I got a new neurologist. He felt that the Chiari was causing the problems and that I was wrongly diagnosed with pseudo tumor. He started my on topamax, which didn't help and caused more problems. I was then referred to a neuro-surgeon. After a few more MRIs it was also discovered that I had a pineal cyst and a partially empty sella. I then had decompression surgery to fix the Chiari. I suffered from complications because of a leak in the dura graph. Again none of my symptoms resolved but have continued to get worse. I recently had a lumbar drain put in to see if a shunt would help, and it made me worse. I am miserable. Im a mom, and a wife and I can barely get through my days because the pain is so bad. I have also lost over 40lbs and kept it off. I don't know what to do. I tried to make an appointment with the Mayo clinic, but they said since I have had a procedure in the last year the won't see me. I don't know what to do. I feel like there is no hope of ever resolving this.
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Unread 11-19-2012, 10:34 PM   #2
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I also have trouble regulating my temperature. I am either extremely hot or cold
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