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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Bolan 06/26/2013

I recently was approved for study at Johns Hopkins with Dr. Moghekar. I would really love to hear stories and experiences with JH and Dr. Moghekar in particular. Also, I would appreciate any advice or questions I should ask. I am scheduled to go the last week in August. My hope is that there is something stentable, but at the very least, I hope they can give me some ways to reduce the pain and pressure. After reading the physicians tab in the spreadsheet, I wonder if I should also try to contact one of the neurosurgeons?

deleted_user 06/26/2013

Hi,

I've never been to John Hopkins, but I am so glad that you are going to be evaluated at one of the best hospitals in the world.
I look forward to hearing about your experience.
Best,
LuLu

SeaSprite 06/26/2013

You are definitely going to the right place. You will get excellent treatment there, I think. I'll be waiting to hear your news about the process, the doctors, and the results.

canamerica88 06/27/2013

That's great! Excellent news!

Melissa-Nauss 06/27/2013

He is my neurologist and I just love him! I think he's excellent and he will lead the way in the discussion and honest treatment options/plans! If you need an NS, he'll refer you. He can also refer you to the neuro-optho, Dr. Patel, if you'd like.
Have you seen this? Ashley's Story...
http://youtu.be/__M9v1FEHfs

canamerica88 06/27/2013

Dr. Patel is amazing, by the way, if you get referred to him! He see to be my neuro ophthalmologist at the Ottawa hospital and left to do work. It was a HUGE loss on my hospitals part.. No one here is half as awesome and knowledgable about this sort of thing as he was.

Melissa-Nauss 06/28/2013

I just met him CanAm and REALLY REALLY like him!!!!! He's fabulous and so down to Earth! :) It's great to hear another good recommendation. :)

canamerica88 06/29/2013

Funny I just had an appointment with his replacement yesterday. I HATE the person who replaced him.
I'm like whyyyyyy did you have to leave???
Good to know though, I remember once this was a sub specialty of his, he k ows his shit. Glad your appointment with him went well :)

Bolan 06/30/2013

Thanks everyone! This is very encouraging. I am letting my hopes get up somewhat that they can give me a direction in which to go. On the outside, i hope they can find a stenosis to correct and make the symptoms better.

Bolan 07/01/2013

I just got my appointment confirmation. My NO appointment is with Patel :-D

canamerica88 07/01/2013

Yaaaassay! :)

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