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I hate to hear what you are saying because it brings back so many memories for me. I have a posterior fossa arachnoid cyst that is at least a third the size of my brain. It takes up the whole back portion of my brain growing upward, and wraps around the right side of the brain. On film, you can't even see the whole back portion of my brain, yet....doctors kept telling me that my cyst was asymptomatic and should not be causing my symptoms and problems. It took going to several doctors and being told the same thing before I found the one doctor, the one neurosurgeon who believed, knew and understood these cysts. I had 2 surgeries by him, the first to fenestrate the cyst and the second to put in a shunt. My story goes on and on. So I decided to write a book about my experience.
I wrote about my experience...what I went through; all the things that went wrong due to lack of medical treatment and doctors not listening to me nor believeing. My book is called, "It's all in Your Head," which is available to get now...just pull up the title and it will lead you to the publisher where you can get it.
I have been told by the AC foundation that they have never seen or known of a book to be written about someone's experience with a brain cyst, and I hope it will encourage, empower, and help many people....anyone diagnosed with a brain cyst, whether it be a smaller sized cyst, to a large one like mine. I hope to help anyone who is not being listened to, or believed and even those who have gotten treatment but need encouragement. I hope you will check it out and have the opportunity to read it. It will hopefully encourage you to keep pursuing treatment, because if you think your symptoms may be cyst related...all that you are going through, then pursue it. You need to keep searching for that doctor who knows and understands brain cysts. It does not matter the size...because although many "are" asymptomatic, not every cyst is. There are a lot of them that do cause problems for patients. It can depend on its location and what it's putting pressure on. Size does not matter.
Keep us updated, but don't give up. See several doctors if you have to, and look into your insurance and see if you are allowed to schedule with a neurosurgeon without a referral. If so, see him. Take your films with you and tell him exactly what's going on, and that you have heard that not all cysts are asymptomatic. You've heard of people who have had problems with their cysts. Be as descriptive as you can about your symptoms. If you have to go through a neurologist first to be referred to a neurosurgeon, then go that route. Tell them that you want to see a neurosurgeon, that you believe your cyst is the culprit of your symptoms and ask for a referral.
Keep us updated. I'd like to hear how you fair and what progress you are able to make.
Comment Reply
Hi,
I hate to hear what you are saying because it brings back so many memories for me. I have a posterior fossa arachnoid cyst that is at least a third the size of my brain. It takes up the whole back portion of my brain growing upward, and wraps around the right side of the brain. On film, you can't even see the whole back portion of my brain, yet....doctors kept telling me that my cyst was asymptomatic and should not be causing my symptoms and problems. It took going to several doctors and being told the same thing before I found the one doctor, the one neurosurgeon who believed, knew and understood these cysts. I had 2 surgeries by him, the first to fenestrate the cyst and the second to put in a shunt. My story goes on and on. So I decided to write a book about my experience.
I wrote about my experience...what I went through; all the things that went wrong due to lack of medical treatment and doctors not listening to me nor believeing. My book is called, "It's all in Your Head," which is available to get now...just pull up the title and it will lead you to the publisher where you can get it.
I have been told by the AC foundation that they have never seen or known of a book to be written about someone's experience with a brain cyst, and I hope it will encourage, empower, and help many people....anyone diagnosed with a brain cyst, whether it be a smaller sized cyst, to a large one like mine. I hope to help anyone who is not being listened to, or believed and even those who have gotten treatment but need encouragement. I hope you will check it out and have the opportunity to read it. It will hopefully encourage you to keep pursuing treatment, because if you think your symptoms may be cyst related...all that you are going through, then pursue it. You need to keep searching for that doctor who knows and understands brain cysts. It does not matter the size...because although many "are" asymptomatic, not every cyst is. There are a lot of them that do cause problems for patients. It can depend on its location and what it's putting pressure on. Size does not matter.
Keep us updated, but don't give up. See several doctors if you have to, and look into your insurance and see if you are allowed to schedule with a neurosurgeon without a referral. If so, see him. Take your films with you and tell him exactly what's going on, and that you have heard that not all cysts are asymptomatic. You've heard of people who have had problems with their cysts. Be as descriptive as you can about your symptoms. If you have to go through a neurologist first to be referred to a neurosurgeon, then go that route. Tell them that you want to see a neurosurgeon, that you believe your cyst is the culprit of your symptoms and ask for a referral.
Keep us updated. I'd like to hear how you fair and what progress you are able to make.
Sincerely,
Maria
September 1, 2011 - 9:12pmThis Comment
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