Sounds like you're making steps in the right direction. It would be hard to believe that it could be anything else, in my book anyways. Your symptoms literally mask mine. I had the exact feelings you describe, the dizziness (didn't know where it was coming from and was told it was all kinds of other reasons other than the cyst), my head ached at the back where the cyst is to the point where I couldn't lean it on the back of a recliner, or the seat in the car without it just killing me. My balance started getting bad, all kinds or strange things.
My surgery that Dr. Spetzler performed was to fenestrate it....this means that he took a wand and went into the cyst directly and knocked down all the walls that had built up within the cyst. He then got the cyst "communicating" with the rest of the cerebral spinal fluid, which means that he got the fluid to be able to move in and out of the cyst freely without getting hung up inside, which was what was making the cyst grow bigger in the first place. However, his endeavors didn't work. Just a few months after the fenestration, all my symptoms returned and it was decided I needed a shunt. Although the surgery itself worked, my cyst had pushed everything on the back of my brain downward and was blocking the normal channel of CSF flow...where the CSF flows down the back of the brain and down the back of the neck. He described it as someone stuffing a ball in a drain and the water cannot get around it so it gets backed up. So the shunt prevents CSF from building in the cyst or otherwise.
Dr. Spetzler told me in the beginning that he could not remove the cyst due to it being so large, and that because seemingly, I've had it all my life, my brain expects it will be there. So to remove it would put my brain into shock and I would certainly die. So that was not an option for me, although that is what I thought and wanted to have happen in the beginning before I knew all the logistics.
Well Adrian, stick to your guns. Personally I think you are on the right track. These cysts can cause all what you are describing and I would not give up until I found someone who believed me and agreed that intervention with the cyst is what you need. You know your body better than anyone, and feeling pressure in your head is not normal....and that is what these cysts do - build up pressure and you feel it. You feel like your head is under water, like you can't think clearly. The world, at times, may even seem kind of cartoonish because you aren't seeing clearly anymore. Once my first surgery was over, I remember waking up in my room and looking at the TV on, and thinking..."gosh I can see!" Everything seemed so clear and vibrant, and not distorted or garbbled.
Let me know how it goes as you try to get things in order. If I can be of any help, please let me know. Good luck with your endeavors to find the right neurosurgeon! I'll pray that you do soon so you can start getting the treatment you need!
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Hi Adrian,
Sounds like you're making steps in the right direction. It would be hard to believe that it could be anything else, in my book anyways. Your symptoms literally mask mine. I had the exact feelings you describe, the dizziness (didn't know where it was coming from and was told it was all kinds of other reasons other than the cyst), my head ached at the back where the cyst is to the point where I couldn't lean it on the back of a recliner, or the seat in the car without it just killing me. My balance started getting bad, all kinds or strange things.
My surgery that Dr. Spetzler performed was to fenestrate it....this means that he took a wand and went into the cyst directly and knocked down all the walls that had built up within the cyst. He then got the cyst "communicating" with the rest of the cerebral spinal fluid, which means that he got the fluid to be able to move in and out of the cyst freely without getting hung up inside, which was what was making the cyst grow bigger in the first place. However, his endeavors didn't work. Just a few months after the fenestration, all my symptoms returned and it was decided I needed a shunt. Although the surgery itself worked, my cyst had pushed everything on the back of my brain downward and was blocking the normal channel of CSF flow...where the CSF flows down the back of the brain and down the back of the neck. He described it as someone stuffing a ball in a drain and the water cannot get around it so it gets backed up. So the shunt prevents CSF from building in the cyst or otherwise.
Dr. Spetzler told me in the beginning that he could not remove the cyst due to it being so large, and that because seemingly, I've had it all my life, my brain expects it will be there. So to remove it would put my brain into shock and I would certainly die. So that was not an option for me, although that is what I thought and wanted to have happen in the beginning before I knew all the logistics.
Well Adrian, stick to your guns. Personally I think you are on the right track. These cysts can cause all what you are describing and I would not give up until I found someone who believed me and agreed that intervention with the cyst is what you need. You know your body better than anyone, and feeling pressure in your head is not normal....and that is what these cysts do - build up pressure and you feel it. You feel like your head is under water, like you can't think clearly. The world, at times, may even seem kind of cartoonish because you aren't seeing clearly anymore. Once my first surgery was over, I remember waking up in my room and looking at the TV on, and thinking..."gosh I can see!" Everything seemed so clear and vibrant, and not distorted or garbbled.
Let me know how it goes as you try to get things in order. If I can be of any help, please let me know. Good luck with your endeavors to find the right neurosurgeon! I'll pray that you do soon so you can start getting the treatment you need!
Take care-
March 4, 2010 - 5:58amMaria
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