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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tchw 06/16/2012

Does anyone know about or had experience with a fistula? Saw NO Thursday and swelling has gotten worse since last visit although not as bad as initial visit. She says it could be a fistula although this is very rare. Any insights? My next MRI is this Thursday. Any info is welcome :)

deleted_user 06/16/2012

I wish I knew more about it but I am sure someone will :) Hang in there.

deleted_user 06/17/2012

My docs suspected a fistula a year or so before my IIH was diagnosed. In my case, they did an angiogram and ruled out fistula. It is my understanding that MRI can SUGGEST whether or not a fistula is present, but only an angiogram can provide a definitive yes or no.

The angiogram was done outpatient, and was not at all painful. If you're going to have one, however, please seek the attention of a specialist. You don't want anyone poking around in your brain without a lot of specialized training and experience behind them.

tchw 06/17/2012

Thanks for the info! What's weird is that I feel fine. I have had a few more headaches but nothing dramatically worse and vision is still good bit dr saw an increase in the swelling of optic nerves. Dr sald she didn't want to do angiogram yet because of risks so we're doing another MRI but this one is supposed to be more detailed or something than the first MRI and MRV. Appt is Thursday. Let's hope we find out for sure one way or the other. Thanks again for the replies and to everyone who shares here. It's comforting to know that I'm not alone with this condition :)

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