Hi Deb,
I was just reading your post. What a mess. First, so sorry about troubles. What a story. I too have an arachnoid cyst...mine is on the back of the brain and takes up over a 1/3 of my brain - wrapping around to the right of the brain. It was too large to remove and had grown over the years so that my brain grew around it - moving and shifting to make room for the growing water bag. I had a fenestration in May of '05 - then got a shunt in Sept. of '05. To be quite honest, I don't know what I would do if I were you...shunt the cyst or another excision. Like I said, I was never given the option of excision due to my brain expecting it to be there after having it so long, and was told to remove it, would mean I would die. My shunt did give me a lot of toruble, but that was primarily because I had a horrible doctor - neurosurgeon, (different than the neurosurgeon who operated and subsequently put in the shunt). The horrible one followed my shunt and he allowed it to overdrain for too long, to the point where I developed a Chiari Malformation and my brain sags now. Brain cysts are trouble no matter what, it seems. There is never an easy answer or an easy fix. To me, the way I think now, is you have to find the doctor you trust the most. The one who seems like they know and understand brain cysts best, and the one you believe will make the best decision and offers you the best treatment plan. Even if it means seeing several different doctors. I wrote my story, my book titled, "It's all in Your Head," and it is out now. You can find it on Amazon, through Barnes and Noble, basically you can get it through any major bookstore. I not only wanted to tell my story, but I hope it will bring hope and a sense of commraderie to all of us who suffer with brain cysts.
Do keep us updated on your decision and how things go for you...what you decide to do etc. I'd like to hear what you decide and how you are doing.
Remember....see as many neurosurgeons as you can or need to, to make the best, most informed decision.
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Hi Deb,
I was just reading your post. What a mess. First, so sorry about troubles. What a story. I too have an arachnoid cyst...mine is on the back of the brain and takes up over a 1/3 of my brain - wrapping around to the right of the brain. It was too large to remove and had grown over the years so that my brain grew around it - moving and shifting to make room for the growing water bag. I had a fenestration in May of '05 - then got a shunt in Sept. of '05. To be quite honest, I don't know what I would do if I were you...shunt the cyst or another excision. Like I said, I was never given the option of excision due to my brain expecting it to be there after having it so long, and was told to remove it, would mean I would die. My shunt did give me a lot of toruble, but that was primarily because I had a horrible doctor - neurosurgeon, (different than the neurosurgeon who operated and subsequently put in the shunt). The horrible one followed my shunt and he allowed it to overdrain for too long, to the point where I developed a Chiari Malformation and my brain sags now. Brain cysts are trouble no matter what, it seems. There is never an easy answer or an easy fix. To me, the way I think now, is you have to find the doctor you trust the most. The one who seems like they know and understand brain cysts best, and the one you believe will make the best decision and offers you the best treatment plan. Even if it means seeing several different doctors. I wrote my story, my book titled, "It's all in Your Head," and it is out now. You can find it on Amazon, through Barnes and Noble, basically you can get it through any major bookstore. I not only wanted to tell my story, but I hope it will bring hope and a sense of commraderie to all of us who suffer with brain cysts.
Do keep us updated on your decision and how things go for you...what you decide to do etc. I'd like to hear what you decide and how you are doing.
Remember....see as many neurosurgeons as you can or need to, to make the best, most informed decision.
Take care,
March 25, 2012 - 9:10amMaria McCutchen
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