Anyone suffered with this????
Tonsillar Herniation (Brain Herniation) - 0.0% - 0 votes
Vision Impairment (Double Vision) - 33.3% - 1 votes
Facial Palsy - 0.0% - 0 votes
Leg Spasticity - 33.3% - 1 votes
Chronic Pain - 33.3% - 1 votes
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)
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.
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 :)
Posted 11/15/2013 3:30 PM (GMT -7)
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.