About 5 years ago I was discovered having nocturnal seizures by my wife. After a CAT scan, they found an arachnoid cyst about the size of my fist on my right posterior fossa near the base of the skull. I was told it had nothing to do with my seizure. They also found enlarged ventricles and tole my I was probably born with hydrcephalus. I continued having night time seizures. After other tests, sleep studies, different meds; they finally got me on a cocktail of medications that seemed to help. But, I was still having occasional seizures. I started gettin really bad headaches during the day. It was like my head was in a vise. But, if I pushed on my fore head, the pressue was relieved. After telling my neurologist about that; the signed me up for an LP (not fun). They discoverd that I had twice the normal pressure. Then I got sent to a neuro surgeon. He decided to fenestrate the cyst. Thet 1 hr surgery turn into a 2 hour surgery. When he tried to fenestrate, the cyst just keptt filling with csf. So, he basically gave up on trying. But, that surgery caused issues in my cerebellum. Causing difficulty with balance. Difficuly with changes in elevation. My hands felt like cartoon balloon hands. I had to concentrate on taking every step. I was walking like I just got off a horse. Eventully got a walker. 40 yr old man walking with a walker.
The neurosurgeon said it would get better. But, "it's the brain. It heals at its own rate". So, after 2 months with no balance, I got into balance therapy. The therapist told my wife (but not me) that I'd probably never walk right again. But, I worked my butt off at home and at therapy. And I walked again after 4 months.
Even though it has not been perfect since, I decided to go back to work. I was going crazy sitting around the house, unable to do much.
That was about 3 years ago.
But since then, everytime I have a seizure, my balance is messed up. And, I am more sensitive to the pressure. Lately, I've been having more seizures. When I wake after a seizure, I can feel the pressure in my cyst. I suspect it's from laying on my back on my pillow.
My neurologist recenlty moved her practice out of state. I'm trying to get in with a new neurologist. Then, I'll pitsh my idea to him. In the meantime, I'm going to look for a down pillow. Thanx for the idea.
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About 5 years ago I was discovered having nocturnal seizures by my wife. After a CAT scan, they found an arachnoid cyst about the size of my fist on my right posterior fossa near the base of the skull. I was told it had nothing to do with my seizure. They also found enlarged ventricles and tole my I was probably born with hydrcephalus. I continued having night time seizures. After other tests, sleep studies, different meds; they finally got me on a cocktail of medications that seemed to help. But, I was still having occasional seizures. I started gettin really bad headaches during the day. It was like my head was in a vise. But, if I pushed on my fore head, the pressue was relieved. After telling my neurologist about that; the signed me up for an LP (not fun). They discoverd that I had twice the normal pressure. Then I got sent to a neuro surgeon. He decided to fenestrate the cyst. Thet 1 hr surgery turn into a 2 hour surgery. When he tried to fenestrate, the cyst just keptt filling with csf. So, he basically gave up on trying. But, that surgery caused issues in my cerebellum. Causing difficulty with balance. Difficuly with changes in elevation. My hands felt like cartoon balloon hands. I had to concentrate on taking every step. I was walking like I just got off a horse. Eventully got a walker. 40 yr old man walking with a walker.
July 6, 2017 - 7:55pmThe neurosurgeon said it would get better. But, "it's the brain. It heals at its own rate". So, after 2 months with no balance, I got into balance therapy. The therapist told my wife (but not me) that I'd probably never walk right again. But, I worked my butt off at home and at therapy. And I walked again after 4 months.
Even though it has not been perfect since, I decided to go back to work. I was going crazy sitting around the house, unable to do much.
That was about 3 years ago.
But since then, everytime I have a seizure, my balance is messed up. And, I am more sensitive to the pressure. Lately, I've been having more seizures. When I wake after a seizure, I can feel the pressure in my cyst. I suspect it's from laying on my back on my pillow.
My neurologist recenlty moved her practice out of state. I'm trying to get in with a new neurologist. Then, I'll pitsh my idea to him. In the meantime, I'm going to look for a down pillow. Thanx for the idea.
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