I came across this website trying to find anyone out there who was experiencing what I'm going through. I read through a lot of the comments and I didn't see anyone mention epilepsy. Does anyone have epilepsy from a posterior fossa arachnoid cyst?
I'm unaware of the size of my cyst since none of my doctors have been very forthcoming. I saw a neurosurgeon about 4 years ago who said they would put in a shunt if my symptoms got too bad but they wanted to wait to do brain surgery as a last resort.
My cyst was found by mistake at the ER in 2008 when I was 22 years old after I had a concussion. Two months later I was found unresponsive in my bathroom after having a grand mal seizure in the shower. I had 5 in one night and they had to revive me 3 times. I don't understand how after 22 years I developed epilepsy.
Well it's been 6 years and I now have extreme neuropathy from all this and I'm curious if having the shunt put in place will help. Along with neuropathy I have nausea, vertigo, loss of hearing/ringing in my ears, memory/lack of focus, insomnia, fainting, my body can't regulate temperature (I'm freezing in 80 degree weather and then randomly I will be overheated and my face turns beet red from being so hot when I shouldn't be), lack of appetite yet weight gain and the list goes on. My whole body seems to be off kilter.
The doctors act like I'm making things up or it's "all in my head". I'm not sure what to do. I've been bounced around from neurologist to neurologist because of my insurance. I live in Texas if anyone could recommend any doctors or have any suggestions period it would be greatly appreciated. Also if anyone has similar stories I'd like to hear. I feel alone in all of this.
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I came across this website trying to find anyone out there who was experiencing what I'm going through. I read through a lot of the comments and I didn't see anyone mention epilepsy. Does anyone have epilepsy from a posterior fossa arachnoid cyst?
I'm unaware of the size of my cyst since none of my doctors have been very forthcoming. I saw a neurosurgeon about 4 years ago who said they would put in a shunt if my symptoms got too bad but they wanted to wait to do brain surgery as a last resort.
My cyst was found by mistake at the ER in 2008 when I was 22 years old after I had a concussion. Two months later I was found unresponsive in my bathroom after having a grand mal seizure in the shower. I had 5 in one night and they had to revive me 3 times. I don't understand how after 22 years I developed epilepsy.
Well it's been 6 years and I now have extreme neuropathy from all this and I'm curious if having the shunt put in place will help. Along with neuropathy I have nausea, vertigo, loss of hearing/ringing in my ears, memory/lack of focus, insomnia, fainting, my body can't regulate temperature (I'm freezing in 80 degree weather and then randomly I will be overheated and my face turns beet red from being so hot when I shouldn't be), lack of appetite yet weight gain and the list goes on. My whole body seems to be off kilter.
The doctors act like I'm making things up or it's "all in my head". I'm not sure what to do. I've been bounced around from neurologist to neurologist because of my insurance. I live in Texas if anyone could recommend any doctors or have any suggestions period it would be greatly appreciated. Also if anyone has similar stories I'd like to hear. I feel alone in all of this.
-Jessica
January 19, 2015 - 12:26amThis Comment
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