Hi Melanie,
Wow! So you got some news today. I have to tell you that that is how I felt when I got the news about my cyst. My arachnoid cyst, (posterior fossa cyst) which sits on the back of the brain, is so large that every doctor directly involved with my case as well as indirectly, has told me it is the largest one they have seen in their years of practice. So large, that many times arachnoid cysts can be removed, but mine is so large that my brain has rearranged itself to make room for it. And so large that if they were to remove it, I would die. This is because my brain expects it to be there now....so to remove it would put my brain into shock. So I will forever have to live with it, and work around it.
I understand your fear completely! My brain is now sagging, due to overdrainage of the shunt they had to put in, and the base of the brain has herniated into the spine. Essentially I need another surgery to correct this chiari malformation, but most neurosurgeons are scared to take my case due to being afraid they will make my sagging worse. I have to see a chiari specialist in NY to see if they will be able to help. Meanwhile, I am living with pain and dizziness, off-balance problems where I "tip" over a lot. It's tough. Especially trying to be a mom to a 9 year old and 11 year old...both boys. Brain surgery of any kind is frightening beyond words. What I had to do was weigh out the outcomes of having the surgery versus not. Which had the potential of making my life better if I followed through with it...and of course it was the surgery. Not having it would only mean definite misery and even possible death. That was not an option with having two (even younger boys) at the time. I also prayed A LOT! I told God it was out of my hands, and in HIS! I do not know if you are a religious person....believe in a higher power....but I found to rely on my faith was extremely helpful. I won't lie and say that I was at total peace with either surgery...fenestration or shunt placement. But I was much more calm than had I not been a prayerful person. I trusted in my faith that God was going to get me home, healed, and back to being a mom....or in your case...back to your life whatever that may entail!
You can do this! If surgery is what you need, just trust in your doctors that they are skilled and experienced in this type of problem and surgery. Inform yourself as much as possible. I found that knowing as much as I could beforehand helped. I'm not one to go into anything blindly. I like to know as much as possible. If you need anyone to help you through this, feel free to contact me. I wish you all the best and will keep you in my thoughts and prayers. I would like to know when and if you decide to have this procedure. If you could send another note in the future. Good luck! And you can do this! I believe we women are extremely strong....we can get through so much when we put our minds to it!
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Hi Melanie,
Wow! So you got some news today. I have to tell you that that is how I felt when I got the news about my cyst. My arachnoid cyst, (posterior fossa cyst) which sits on the back of the brain, is so large that every doctor directly involved with my case as well as indirectly, has told me it is the largest one they have seen in their years of practice. So large, that many times arachnoid cysts can be removed, but mine is so large that my brain has rearranged itself to make room for it. And so large that if they were to remove it, I would die. This is because my brain expects it to be there now....so to remove it would put my brain into shock. So I will forever have to live with it, and work around it.
I understand your fear completely! My brain is now sagging, due to overdrainage of the shunt they had to put in, and the base of the brain has herniated into the spine. Essentially I need another surgery to correct this chiari malformation, but most neurosurgeons are scared to take my case due to being afraid they will make my sagging worse. I have to see a chiari specialist in NY to see if they will be able to help. Meanwhile, I am living with pain and dizziness, off-balance problems where I "tip" over a lot. It's tough. Especially trying to be a mom to a 9 year old and 11 year old...both boys. Brain surgery of any kind is frightening beyond words. What I had to do was weigh out the outcomes of having the surgery versus not. Which had the potential of making my life better if I followed through with it...and of course it was the surgery. Not having it would only mean definite misery and even possible death. That was not an option with having two (even younger boys) at the time. I also prayed A LOT! I told God it was out of my hands, and in HIS! I do not know if you are a religious person....believe in a higher power....but I found to rely on my faith was extremely helpful. I won't lie and say that I was at total peace with either surgery...fenestration or shunt placement. But I was much more calm than had I not been a prayerful person. I trusted in my faith that God was going to get me home, healed, and back to being a mom....or in your case...back to your life whatever that may entail!
You can do this! If surgery is what you need, just trust in your doctors that they are skilled and experienced in this type of problem and surgery. Inform yourself as much as possible. I found that knowing as much as I could beforehand helped. I'm not one to go into anything blindly. I like to know as much as possible. If you need anyone to help you through this, feel free to contact me. I wish you all the best and will keep you in my thoughts and prayers. I would like to know when and if you decide to have this procedure. If you could send another note in the future. Good luck! And you can do this! I believe we women are extremely strong....we can get through so much when we put our minds to it!
Good luck!! and God Bless!!
January 14, 2010 - 8:24pmThis Comment
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