Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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cgoyergrand7 02/22/2013

Does anyone know of a good neurologist in New York or any surrounding state? I live in the Albany, NY area and my family doctor calls it "smallbany". We can't seem to get anywhere is finding a neurologist who truly understands IIH.

magnatomamma 02/22/2013

At Cornell there are a couple of doctors with NIH funding to study the use of stenting for patients with IH and compressed veins. That may be a start. They are at least familiar with the disease. There are also very good neuro's at NYU. I would try to go to a teaching hospital if you can. Most have departments you can find online and request an appointment or second opinion.

SeaSprite 02/22/2013

Look in our Symptom List online. There are 3 doctors listed. Click on the "Great Doctors" tab at the bottom.

http://www.editgrid.com/user/ih_support_group/IIH_Support_Group_Symptom_List

Password: IIH

While you are there please add your data in the "raw data" tab. The group built the symptom list to help us understand what symptoms many of us share. Most of us have been pretty surprised. I find it comforting to see I'm not alone in all this.

If anybody has a great IH doctor please add him or her to the list.

auniecoley 02/23/2013

I'm in Boston, my neurologist is Excellent. I wouldn't call him an expert, but he has seen me through thick and thin these past 2 years. His name is Dr. Bryan Ho at Tufts Medical Center. He is an extremely kind man. Let me know if you would like any more info on him.
Best of luck,
Nicole

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