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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Melissa-Nauss 03/14/2013

http://www.checkorphan.org/grid/news/treatment/brain-stent-offers-alternative-to-shunt-for-fixing-potentially-blinding-vein-narrowing

notsurewhat2puthere 03/15/2013

thanks, I really wanna go to john hopkins

mary1973 03/15/2013

Great info thanks for posting!

deleted_user 03/17/2013

Hi all,

I emailed IHRF about this article for their views and here is what I got. FYI

Thank you for contacting us about the Hopkins' study.

Hello,
We are familiar with stenting for proven ceebral venous sinus stenosis and the Hopkins study. tenting has proven beneficial in resolving selected cases. However, it has potential complications and as of yet we do not long term effects. Also so far it seems a relatively small number of patients so far have been found to qualify.

Our IH Registry is presently supporting a long term stenting study on IIH patients at Cornell Medical school in NYC. We believe stenting which so far in selected cases has demonstrated good results requires additional study.

IHRF

Melissa-Nauss 03/17/2013

Thanks. I have spoken with someone who had the stenting done with my doctor at Hopkins and she is now cured. I asked my doctor about stenting because I DO have venous stenosis but he requires that you have failed diamox (3,000mg and still no improvement), have venous stenosis (duh), AND have worsening vision. They don't just stent everyone...it's more of, in my mind, an alternative to a shunt. I think a stent will be interesting long term...just think we already stent veins/arteries in the heart so much!

canamerica88 03/21/2013

My SUPER AMAZING neuropthamlogist left me to go work at John Hopkins. It's actually AWFUL for me, since, he was the brains (ha!) of my case, the one who actually knew what he was talking about and knew how to deal with me.
His name is Dr.Patel if any of you go there/ever need to find a new doctor.

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