New Member
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Join Date: Nov 2011
Posts: 1
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New Member
Join Date: Nov 2011
Posts: 1
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Thank You
First, I want to say thank you all for sharing your stories on here. I have been dealing with a leak for almost 16 years now. What I would have given for a site like this when I was first having difficulty. I was 17 years old when I first began having symptoms of a CSF leak. It took 5 years for the original diagnosis and another 5 years and 2 surgeries to finally repair the leak. I have had numerous CTs/MRIs and finally the myleogram was the tool that showed the the location of the leak. They were not able to see the extent of the leak until the myleogram. I'm not sure what medium they used for contrast (its been 6 years since the procedure). It was injected in the lower spine and then they tilted me (head down) so the contrast could travel through the spine and brain. I ended up with a secondary leak from having the myleogram. They treated that one with a couple of blood patches. The nice thing is that since they now know the location of the leak, I only have to have an MRI(with contrast) to monitor the leak and any changes to the area. The fight for treatment of this condition never ends. I belong to an HMO and every time I have symptoms I have to see an ENT in my "home" area to get a referral to "my team." Every time I see a new ENT they want to go through all of their own theories before giving me a my referral even though I tell them what my situation is. Once they finally look at my record to see the history (usually takes me getting angry and making my headaches worse), it takes several weeks for the referral to come through. Then I have to wait for an appointment with my neurosurgeon/ENT team which takes another 1-2 months. Fortunately, "my team" (a neurosurgeon and an ENT specialist) are only a 2 hour drive away and are definitely lifesavers.
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