Anyone suffered with this????
0
Tonsillar Herniation (Brain Herniation) - 0.0%
1
Vision Impairment (Double Vision) - 33.3%
0
Facial Palsy - 0.0%
1
Leg Spasticity - 33.3%
1
Chronic Pain - 33.3%

 
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Jesus ❤️
Regular Member


Date Joined May 2013
Total Posts : 35
   Posted 5/27/2013 6:19 AM (GMT -7)   
Not Rare Medical Condition

Post Edited (Angel99) : 8/17/2017 11:40:26 PM (GMT-6)


bettyNJ
New Member


Date Joined May 2013
Total Posts : 1
   Posted 5/28/2013 6:53 AM (GMT -7)   
I had this condition and I'm sorry to say very few people treat it.  After researching, I found Dr. Wouter Schevink, a neurosurgeon at Cedars Sinai Hospital in LA.  I contacted him and he was very helpful.  Since I live in NJ, I tried to find alternatives.  Don't bother; I had some less than successful experiences.  I finally did go to Dr. Schevink and he successfully treated me.  Yes it was an effort and the co-pays and travel expenses were not insignificant.  But I now have a pain-free life and no longer spend my time laying down, taking meds or getting sick.  Contact me off list if you want more information.

Michellle
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/15/2013 3:05 PM (GMT -7)   
BettyNJ, Are you still around?

My neurologist doesn't know what he can do for me and I would love to know what this Dr. did to help you. My leak was spontaneous. I had a blown pupil and all symptoms of a stroke. 4 CT scans, 2 MRI's, and a nuclear scintography study... and that darn leak won't show it's self. I should mention that I was diagnosed via lumbar puncture, my csf fluid pressure was too low to record.

I am getting worse every week and having a hard time keeping up my optimism. Posts like yours though give me hope.

I REALLY HOPE TO HEAR THAT SOME ONE GOT BETTER :)

Michellle
New Member


Date Joined Nov 2013
Total Posts : 2
   Posted 11/15/2013 3:30 PM (GMT -7)   
Angel,

Have you ever seen a naturopathic doctor? I am seeing one now in addition to my neurologist (for stress and depression related to my illness - working WAY better than the drugs BTW). I'm starting to think they might be my only option. I am case 1 for them though. Thought I might ask.
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