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chronic csf leaker

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Old 08-27-2008, 04:38 PM #1
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Hi Everyone,
I've had a chance to read a few posts from other csf leakers and it's comforting to know that 1) I'm not alone and 2) that my symptoms aren't "all in my head". I found out about my leaks about 15 months ago when I gave birth to my daughter (3rd child). According to all the imaging I've been through, I'm leaking in both my thoracic and lumbar spine. I'm pretty sure I've been leaky for over 10 years though and just remained misdiagnosed. For a while doctors thought I might have MS. I've been through all of the traditional testing (MRI's, CT and MRI myelogram). I've also been through most of the treatments: 3 blood patches- 1 high volume tilt table, and 3 injections of fibrin gluing. All of these have only lasted at the most a few months. I've been to see Dr. Schevink at Cedars/Siniai (forgive me for spelling it wrong) and he seemed to be the most apt and knowledgable out of the 20+ neurologists, neurosurgeons, and neuroradiologists I've seen. I'm starting to feel defeated and depressed. I really don't know what to do at this point as most of my symptoms have returned like the neck stiffness/pain, pain in ears and eyes, lethargy, loss of coordination, inability to concentrate or stay focused, and of course the hallmark headache when standing. I'm just looking for others that are in the same situation and would be interested in sharing anything that has worked for them or if anyone has seen any particular Dr. or Specialist they might recommend.

Thanks for any help!
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Old 08-28-2008, 11:13 AM #2
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Hi, Angieo! Welcome to NeuroTalk!

Ugh, that sounds miserable! I see that you've located our spinal disorders forum and I hope you'll find some answers there. We also have a search engine located in the toolbar near the top of every page.

You are welcome to join in anywhere.
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Old 08-28-2008, 09:50 PM #3
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Hi angieo and welcome to NeuroTalk! I'm so glad you found the website and hope that you can finally get some answers.


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Old 08-29-2008, 12:25 AM #4
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Hello and welcome to NeuroTalk. Great to see you have come to be with us. Just let us know if we can be of any help.

Again welcome, looking forward to seeing you around.

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Old 08-31-2008, 12:49 PM #5
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hi angieo I have heard good things about Dr. Schevink on other forums so hope he can help you welcome to NT keep posting you will find some useful info and support here
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Old 09-02-2008, 09:00 AM #6
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Hello angieo and welcome to NeuroTalk. Glad you found us and hope you take a look around and join in anywhere.

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