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EmpowHER Guest
Anonymous

Ugghhh.... I definitly feel your pain. I found out about 6 years ago about my cyst. Appearantly, I've had it since birth and never knew. After a nocturnal seizure, I went to the hospital and had a CT scan. There the posterior fossa cyst (about the size of my fist) and signs of long term hydrocephalus where discovered. I was told I probably had seizures my whole life (36 years at the time) and never knew. Anyhoo, after many tests and going to different doctors and trying different meds, I got the seizures under control --ish. Eventually, after getting massive headaches, I got a LP (not fun). My pressure was twice the norm. So, my neurologist reffered me to a neurosurgeon. He said my cyst was the biggest he'd ever seen. He decided to do a fenestration. Well, during that surgery, I was producing too mu fluid for him to perform a good fenestration. But, after that surgery, my balance was way off. When I walked, it looked like I was drunk. A month later, I woke up with a massive pressure headache and vomiting and leaking fluid from incision. One call, and I was off by ambulance to the hospital. They got me in an MRI to map my skull for a VP shunt. Now I have a lump on my head. But, even after that surgery, I still had little to no balance. So, off to balance therapy I go. After 6 months of therapy,(and out of work) I was able to walk again. Up until about a year ago, I was great. But, now I'm starting to show signs of seizures again. When I have a seizure, it messes with my balance, makes me tired, vertigo, nausia, memory issues, sometimes messes with my "filter". Some of that is just the lack of sleep, but some of it brain stuff. And to top it all off, I found out recently that my epileptologist is moving out of state. GRRRRRRR!!!!!

May 4, 2017 - 9:20pm

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