Hi Ray,
Wow, that was an interesting story. Sorry to hear about all you are going through and dealing with. It is funny, because after many months of reading other people's stories, despite us all having the same diagnosis (essentially), there are many differences in the symptoms. Personally, regarding your situation, and not being a doctor, but a fellow-cyst"er", I think it could be your cyst. These cysts press on vital organs of the brain and cause neurological symptoms...numbness, tingling, and depending on what they are pressing on...which nerves, that is where the problems will be (such as numbness in arms or legs, face, etc.) My cerebellum was severely compressed along with my brain stem, which caused full-body numbness when I was in the lying down position for any length of time. Head to toe, I would be numb and unable to move anything...paralyzed. It was frightening. I too have problems with sleep and just wanting to sleep anywhere and at odd times. I have been known to be sitting at my computer and just doze off and wake-up at various times later feeling really, really bad...dizzy etc. It is thought too, that I have had seizures, though nighttime seizures. I haven't had an EEG yet though. So there are a lot of similarities. It is maddening when these doctors try to tell you that the problems are not cyst related. It seems there are soooo many doctors who just don't believe us, and very few who really understand these cysts, and what they are capable of. I was sooo glad when I found Dr. Spetzler in Phoenix, because he never once doubted that all my problems were cyst related. In fact, everything I told him, he said, "that's exactly what these cysts do." It was a breath of fresh air to have someone who not only believed me, but was knowledgable in arachanoid cysts.
"If" I were you, I would just keep searching for the doctor, neurosurgeon, who understands arachnoid cysts. I would let him know that although you do realize thata many of them are not problem causers and are normally asymptomatic for many people, that some people do wind up having problems and you believe yours is one of them. It takes believing yourself, that your cyst is the culprit, and persistence in finding the doctor who also believes it.
Keep us posted, and good luck. Try to stay positive.
Maria
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Hi Ray,
August 9, 2010 - 3:58amWow, that was an interesting story. Sorry to hear about all you are going through and dealing with. It is funny, because after many months of reading other people's stories, despite us all having the same diagnosis (essentially), there are many differences in the symptoms. Personally, regarding your situation, and not being a doctor, but a fellow-cyst"er", I think it could be your cyst. These cysts press on vital organs of the brain and cause neurological symptoms...numbness, tingling, and depending on what they are pressing on...which nerves, that is where the problems will be (such as numbness in arms or legs, face, etc.) My cerebellum was severely compressed along with my brain stem, which caused full-body numbness when I was in the lying down position for any length of time. Head to toe, I would be numb and unable to move anything...paralyzed. It was frightening. I too have problems with sleep and just wanting to sleep anywhere and at odd times. I have been known to be sitting at my computer and just doze off and wake-up at various times later feeling really, really bad...dizzy etc. It is thought too, that I have had seizures, though nighttime seizures. I haven't had an EEG yet though. So there are a lot of similarities. It is maddening when these doctors try to tell you that the problems are not cyst related. It seems there are soooo many doctors who just don't believe us, and very few who really understand these cysts, and what they are capable of. I was sooo glad when I found Dr. Spetzler in Phoenix, because he never once doubted that all my problems were cyst related. In fact, everything I told him, he said, "that's exactly what these cysts do." It was a breath of fresh air to have someone who not only believed me, but was knowledgable in arachanoid cysts.
"If" I were you, I would just keep searching for the doctor, neurosurgeon, who understands arachnoid cysts. I would let him know that although you do realize thata many of them are not problem causers and are normally asymptomatic for many people, that some people do wind up having problems and you believe yours is one of them. It takes believing yourself, that your cyst is the culprit, and persistence in finding the doctor who also believes it.
Keep us posted, and good luck. Try to stay positive.
Maria
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