Hi Hamp,
Sorry to hear about all your trouble. It sounds like you have really been put through the ringer over the years as well as have developed some tough coping skills to have gotten through what you have.
My name is Maria and I am the one who started this following on arachnoid cysts, primarily because when I was going through (and still going through) all my trouble, I felt like I had no one to help...no one to listen, and no one to bounce ideas off of. I didn't know where or who to turn to. There was no support. I am so glad to see so many people coming here to get support and bounce their questions off of others who have been through similar situations.
Like you, I was told that my cyst could not be causing the problems I was having because they are "usually" asymptomatic. Well usually means just that....that normally you wouldn't expect them to cause problems, but they "can", cause problems....and mine did. Mine was compressing the brain stem and cerebellum and had shifted my skull up and forward, compromised my pituitary gland, and narrowed my optic chiasm (where all the optic nerves pass). They could not remove it or I would die, so they fenestrated it....opened it up so that all the cerebral spinal fluid freely passed through the cyst and did not get hung up in the walls and cause it to grow and gain pressure. This worked for about 3 months, then I had to have a shunt put in.
It was hard finding a doc who would listen to me and believe me about all my odd symptoms..the pressure in my head, the full body numbness when I slept, memory problems, the horrible fog I lived in, cognitive deficits, and a hundred other symptoms. I mean my cyst is huge....how could it NOT be the cause of so many neurological issues. That is what I had to keep asking myself, and every time I answered myself, the answer was obvious....it was my cyst. How could you have such a large foreign object growing on your brain and not have problems? It is a foreign object that does not belong there, and if organs and parts of the brain are shifting to make room for it....wah lah. There's your answer. And I knew it was the cyst for sure once the first surgery was over and I could once again see, think, focus, didn't have near the numbness at night when I slept....so many things relieved by the surgery. That was my answer....and all the doctors that tried to tell me the cyst was not the culprit, but named 15 other things it could be.....were wrong.
I tell people to listen to their heart and their better judgement. If you think the cyst could be causing your problems, because only you know what you are feeling, how things used to be, what has changed, etc., then see 15 different neurosurgeons if you have to. I saw three before my surgery but would have seen more until I found the one who believed me, and had the knowledge about these types of situations to know it was the cyst. So many docs today, do not know enough about them to make those kind of judgement calls. They go by the textbooks that say they are normally asymptomatic. So who are the ones who do not fall under the "normally asymptomatic" list? Well, I was one.
Keep searching, and keep an open mind. If you feel like the cyst is responsible for a lot or all of your symptoms, keep looking. See as many neurosugeons as you need to. Keep record of all your symptoms...changes, etc. And good luck. Don't give up on yourself or the medical field. You will find the right doc who will help you....you may just have to "find" him.
Keep us updated.
Good luck-
Maria
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Hi Hamp,
July 27, 2010 - 5:38pmSorry to hear about all your trouble. It sounds like you have really been put through the ringer over the years as well as have developed some tough coping skills to have gotten through what you have.
My name is Maria and I am the one who started this following on arachnoid cysts, primarily because when I was going through (and still going through) all my trouble, I felt like I had no one to help...no one to listen, and no one to bounce ideas off of. I didn't know where or who to turn to. There was no support. I am so glad to see so many people coming here to get support and bounce their questions off of others who have been through similar situations.
Like you, I was told that my cyst could not be causing the problems I was having because they are "usually" asymptomatic. Well usually means just that....that normally you wouldn't expect them to cause problems, but they "can", cause problems....and mine did. Mine was compressing the brain stem and cerebellum and had shifted my skull up and forward, compromised my pituitary gland, and narrowed my optic chiasm (where all the optic nerves pass). They could not remove it or I would die, so they fenestrated it....opened it up so that all the cerebral spinal fluid freely passed through the cyst and did not get hung up in the walls and cause it to grow and gain pressure. This worked for about 3 months, then I had to have a shunt put in.
It was hard finding a doc who would listen to me and believe me about all my odd symptoms..the pressure in my head, the full body numbness when I slept, memory problems, the horrible fog I lived in, cognitive deficits, and a hundred other symptoms. I mean my cyst is huge....how could it NOT be the cause of so many neurological issues. That is what I had to keep asking myself, and every time I answered myself, the answer was obvious....it was my cyst. How could you have such a large foreign object growing on your brain and not have problems? It is a foreign object that does not belong there, and if organs and parts of the brain are shifting to make room for it....wah lah. There's your answer. And I knew it was the cyst for sure once the first surgery was over and I could once again see, think, focus, didn't have near the numbness at night when I slept....so many things relieved by the surgery. That was my answer....and all the doctors that tried to tell me the cyst was not the culprit, but named 15 other things it could be.....were wrong.
I tell people to listen to their heart and their better judgement. If you think the cyst could be causing your problems, because only you know what you are feeling, how things used to be, what has changed, etc., then see 15 different neurosurgeons if you have to. I saw three before my surgery but would have seen more until I found the one who believed me, and had the knowledge about these types of situations to know it was the cyst. So many docs today, do not know enough about them to make those kind of judgement calls. They go by the textbooks that say they are normally asymptomatic. So who are the ones who do not fall under the "normally asymptomatic" list? Well, I was one.
Keep searching, and keep an open mind. If you feel like the cyst is responsible for a lot or all of your symptoms, keep looking. See as many neurosugeons as you need to. Keep record of all your symptoms...changes, etc. And good luck. Don't give up on yourself or the medical field. You will find the right doc who will help you....you may just have to "find" him.
Keep us updated.
Good luck-
Maria
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