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Reply: Pseudotumor cerebri question

Sorry for the very long post...just one last thing Over time I became intolerant of...

Posted by LuLu1586

4 Replies | Reply | Watch This DiscussionReport This| Share this:Pseudotumor cerebri question Sorry for the very long post...just one last thing Over time I became intolerant of...

Includes Expert Content

Reply: Pseudotumor cerebri question

Hi There, I know this is a pretty old post, but I thought I would reply on the off chance...

Posted by LuLu1586

Hi There,
I know this is a pretty old post, but I thought I would reply on the off chance your daughter is still experiencing difficulties with her PTC.
I was DX'd with PTC at 22 and am 37 now. I have gone in and out of remission over the years.
About 5 years ago, I suddenly lost about 80% of my vision in 1 week. My Neuro-Opthamologist gave me a choice between a shunt or a procedure called Optic Nerve Decompression (sometimes known as Fenestration too) Surgery.
I chose the Optic Nerve Surgery knowing how notorious shunts were for getting kinks and needing revisions.
The surgery was easy, restored my vision immediately, and now I only take Topamax for residual headaches.
Let me also say that I also used to have serial spinal taps, but I now refuse spinals. There are special sonograms with small wands that can check the fluid behind your daughters eyes-feels weird, but not painful. If your daughter ABSOLUTELY must have another spinal insist she have the procedure done with Fluroscopy and performed by a nuclear radiologist. Too many spinal taps can put a person at risk for a condition called Chiari Malformation.
As for where to go for treatment...I don't know where you live, or if you are willing to travel, but here are where some of the experts are:
Dr Katz in Ohio-Book an eval appt. with him. He practices and researches.
Optic Nerve Decompression Surgery- Be very careful in choosing a Neuro Surgeon. I recommend my Dr- Dr. McHenry at UTSW in Dallas TX. He is well known for perfecting the technique and people from all over the country travel to him for this procedure.
Check out www.ihrfoundation.org/ for the latest research-not much going on here in the US (lose weight, lose weight,blah, blah blah) But lots of new studies in Sweeden.
And finally,
For moral support for you and your daughter Try DailyStrength,org They have a support group for people with PTC and it is awesome to to talk to others with the same disease and get info, share tips, etc...
My best to you and your daughter,
LuLuView Thread

Posted byLuLu1586

4 Replies | Reply | Watch This DiscussionReport This| Share this:Pseudotumor cerebri question Hi There, I know this is a pretty old post, but I thought I would reply on the off chance...

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