Hi Larry,
I was reading your post and you sound like you have some similarities to my situation. I have a very large cyst as well, though mine is a posterior fossa arachnoid cyst....on the back of the brain and measures at least 1/3 of my brain size. It takes up the entire back postion of the brain and wraps around to the right. I had the cyst fenestrated in 2005 in Phoenix at Barrows Neurological Center and had a shunt put in 4 months later. Mine was too large to remove, unfortunately.
Months later my shunt overdrained, due to certain doctors and their refusal to listen to me, which caused my brain to sag and for me to develop a chiari malformation.
All of these problems cause me to live with pain, terrible balance problems, vision disturbances, fatigue, my short term memory is shot. I could never work outside the home again either, nor can I fly. To add insult to injury, I just went through a divorce this past year...my ex-husband (not to go into it too much), but he lost his compassion for what I was left to deal with and it all only increased his anger management issues, his drinking etc. So now, on my own and living with my symptoms, I am a single mom of two boys....10 and 13. It's been a tough time. I lost my health insurance due to the divorce and had to wait 6 months before I applied with Inclusive Health of North Carolina, which I just got two months ago.
Now....to add insult to injury, I think I may be having night time seizures. I have to sleep on my right side only. If I sleep on my back or left side, I get the symptoms, so need to see my doc.
I wrote my story and just had it published this year. It's called "It's all in Your Head," and is available through Barnes and Noble and Amazon. I wanted to help others who may be going through similar situations. Maybe you will want to read it sometime and hope it will help to see that you are not alone.
Anyway, I feel your pain...literally. Everything you describe, I can relate to. I don't know many doctors on the east coast...I go to Duke, myself, to Dr. Allan Friedman. Duke is an awesome facility and have wonderful docs there. But I know how hard it is to travel.
I started this following on brain cysts here on EmpowHer a couple years ago because I know how alone I felt going through my situation in '05, and there was no where I could find online, to get answers or communicate with others about it.
I would love to hear how you do and what type of treatment you find. Maybe you'll get my book and hopefully it will help you relate and give you hope. Please do keep in touch and update. Godd luck to you and God bless!
Comment Reply
Hi Larry,
I was reading your post and you sound like you have some similarities to my situation. I have a very large cyst as well, though mine is a posterior fossa arachnoid cyst....on the back of the brain and measures at least 1/3 of my brain size. It takes up the entire back postion of the brain and wraps around to the right. I had the cyst fenestrated in 2005 in Phoenix at Barrows Neurological Center and had a shunt put in 4 months later. Mine was too large to remove, unfortunately.
Months later my shunt overdrained, due to certain doctors and their refusal to listen to me, which caused my brain to sag and for me to develop a chiari malformation.
All of these problems cause me to live with pain, terrible balance problems, vision disturbances, fatigue, my short term memory is shot. I could never work outside the home again either, nor can I fly. To add insult to injury, I just went through a divorce this past year...my ex-husband (not to go into it too much), but he lost his compassion for what I was left to deal with and it all only increased his anger management issues, his drinking etc. So now, on my own and living with my symptoms, I am a single mom of two boys....10 and 13. It's been a tough time. I lost my health insurance due to the divorce and had to wait 6 months before I applied with Inclusive Health of North Carolina, which I just got two months ago.
Now....to add insult to injury, I think I may be having night time seizures. I have to sleep on my right side only. If I sleep on my back or left side, I get the symptoms, so need to see my doc.
I wrote my story and just had it published this year. It's called "It's all in Your Head," and is available through Barnes and Noble and Amazon. I wanted to help others who may be going through similar situations. Maybe you will want to read it sometime and hope it will help to see that you are not alone.
Anyway, I feel your pain...literally. Everything you describe, I can relate to. I don't know many doctors on the east coast...I go to Duke, myself, to Dr. Allan Friedman. Duke is an awesome facility and have wonderful docs there. But I know how hard it is to travel.
I started this following on brain cysts here on EmpowHer a couple years ago because I know how alone I felt going through my situation in '05, and there was no where I could find online, to get answers or communicate with others about it.
I would love to hear how you do and what type of treatment you find. Maybe you'll get my book and hopefully it will help you relate and give you hope. Please do keep in touch and update. Godd luck to you and God bless!
Maria
December 14, 2011 - 4:45amThis Comment
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