I have a complicated history and am rethinking everything right now.
I had t/p surgery in Jan 2006. Then I had a csf leak from my skull base that was diagnosed and repaired a few years later. Then my symptoms came back in 2010. It ended up that I had yet another csf leak and had another repair in July 2010.
During that surgery they placed a lumbar drain, used fluorscein (sp?) and it was decided that I had PTC (pseudo tumor cerebri). So I was placed on a medication called diamox to try and lower my intracranial pressure. Ends up that I was allergic to the sulfa in that med so I was switched to Topamax. During the time since the 2010 surgery, no one has been "tracking" my pressure and then to top it off, I began leaking yet again in 2011 out of my left ear very intermittently. I was taken off of the Topamax when the leak began. It has never been confirmed that this leak is csf as we have not been able to get a sample. However, I do have spinal headaches like I had with the two previous leaks.
i've had a few apps with an otologist. A CT scan was done of the temporal bone over my ear that is leaking. It seems that I have very little or no bone there so the dura is exposed. When I had testing for the other csfleaks it was brought up that my skull base is very thin and that I have something called dehiscence. So this thinning and lack of bone thing seems to something else that is going on. Like the skull base, the area can be patched and there is little risk to my hearing. In a few weeks I will be seeing a neurosurgeon about the pressure issue and one topic to be discussed is insertion of a shunt.
I need help formulating my questions and need advice. If there is anyone else that has had leaks, PTC, bone thinning or shunt placement please get in touch or comment if you want to.
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