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Joined: Feb 24, 2012

Would anyone have any experience with pesudotumor cerebre

Posted by @dmannunz, Feb 24, 2012

My daughter has been diagnosed with pseudo tumor cerebre in 12/11 she has had 2 spinal taps with the most recent one resulting in a debiltating spinal headache. She still has a headache on a scale of 1 to 10 approximately now at a 6, yesterday being 10+. She says that her ears feel blocked, similar to the sensation you would feel when traveling on a plane. Her face & hands feel like they are tingling. Would anyone has been through this & does weight loss eliminate this condition. She resides in the Boston area.



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Joined: Sep 06, 2012
Posted by @ashleykay, Sep 10, 2012

I have the pseudo tumor, I am now 26 I had a spinal tap 5 years ago and got the spinal headache it is AWFUL I had to have 2 blood patches:( on my last tap I didn’t get too bad of one but still had it. They say weight loss helps, but when I was first diagnosed with it I had lost 100 lbs so idk how much weight loss helps…be sure and keep her vision checked that’s one thing I didn’t do and wish I had of!! I had to have the optic nerve sheeth fenetration surgery and as a result I am now totally blind in one eye. Wish you and her the best of luck hope this didn’t scare you

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