I sure am sorry for what you are going through. I can identify with quite a bit that you are saying. There isn't a whole lot out there on brain cysts. When I was diagnosed in '04, I couldn't find anything. I started this forum months and months ago, on brain cysts. I got on here, Empowher and decided that I wanted people to be able to connect about brain cysts.
I also wrote my story...my memoir about what I went through with my brain cyst, called "It's all in Your Head." I got the same type treatment with my condition, as it sounds like that you are. I was made to feel like a hypochondriac, I was a stressed out mom and woman, all kinds of things. Meanwhile, my cyst grew and grew and is now at least a 1/3 the size of my brain. It takes up the entire back part of my brain and wraps around to the right. I lived with a lot of neurological symptoms that they ignored. I finally found a doctor, Dr. Robert Spetzler in Phoenix, AZ who understood these cysts and operated. He fenestrated my cyst (knocked down all the walls that had built up inside) where the fluid gets behind them and can't get out. Brain cysts are notorious for building walls. You may want to ask if your cyst has walls, or is multi-septated. That's the term.
I wound up having to have a shunt put in, and the doctor who followed (or didn't follow) my shunt, allowed it to overdrain to the point where I wound up with my brain sagging and a chiari malformation....where the brainstem herniates into the spine. Lots of issues. I still live with all these conditions.
I don't know what I would do in your situation, being you aren't from the US. If you can come here to see someone...I would highly recommend Dr. Spetzler, or one of his colleagues at Barrow's Neurological Center in Phoenix. They are very caring, understanding of the brain and cysts, and knowledgeable.
Feel free to contact me, and look into my book if you get the chance, "It's all in Your Head," Maria McCutchen...on Amazon or through Barnes and Noble. Maybe it will help you...inspire you, or you find you can identify with my story.
Good luck to you. And don't give up. Keep searching for that doctor that understands brain cysts. Also....keep record of your symptoms. That was huge for me to show a pattern with symptoms, etc. Write them down or type them, but keep daily record of what's going on. It will show changes as well, to give doctors a better idea of what is happening.
Comment Reply
Hi Jess,
I sure am sorry for what you are going through. I can identify with quite a bit that you are saying. There isn't a whole lot out there on brain cysts. When I was diagnosed in '04, I couldn't find anything. I started this forum months and months ago, on brain cysts. I got on here, Empowher and decided that I wanted people to be able to connect about brain cysts.
I also wrote my story...my memoir about what I went through with my brain cyst, called "It's all in Your Head." I got the same type treatment with my condition, as it sounds like that you are. I was made to feel like a hypochondriac, I was a stressed out mom and woman, all kinds of things. Meanwhile, my cyst grew and grew and is now at least a 1/3 the size of my brain. It takes up the entire back part of my brain and wraps around to the right. I lived with a lot of neurological symptoms that they ignored. I finally found a doctor, Dr. Robert Spetzler in Phoenix, AZ who understood these cysts and operated. He fenestrated my cyst (knocked down all the walls that had built up inside) where the fluid gets behind them and can't get out. Brain cysts are notorious for building walls. You may want to ask if your cyst has walls, or is multi-septated. That's the term.
I wound up having to have a shunt put in, and the doctor who followed (or didn't follow) my shunt, allowed it to overdrain to the point where I wound up with my brain sagging and a chiari malformation....where the brainstem herniates into the spine. Lots of issues. I still live with all these conditions.
I don't know what I would do in your situation, being you aren't from the US. If you can come here to see someone...I would highly recommend Dr. Spetzler, or one of his colleagues at Barrow's Neurological Center in Phoenix. They are very caring, understanding of the brain and cysts, and knowledgeable.
Feel free to contact me, and look into my book if you get the chance, "It's all in Your Head," Maria McCutchen...on Amazon or through Barnes and Noble. Maybe it will help you...inspire you, or you find you can identify with my story.
Good luck to you. And don't give up. Keep searching for that doctor that understands brain cysts. Also....keep record of your symptoms. That was huge for me to show a pattern with symptoms, etc. Write them down or type them, but keep daily record of what's going on. It will show changes as well, to give doctors a better idea of what is happening.
Contact me anytime-
December 7, 2011 - 5:56amGood luck,
Maria
This Comment
Reply