Wow....if your story doesn't sound like mine....then I don't know whose does. : )
So sorry you have all this going on. I got the same runaround with doctors and trying to tell me it was all in my head. Have you seen my book, appropriately titled, "It's all in Your Head." If you haven't seen or read it, you may want to. You will probably recognize a lot of the story as your own.
I was made to believe the same thing. Got no where with docs and treatment and then finally had the fenestration. Then the shunt....4 months later, and then a different neurosurgeon following my shunt, let it over drain and I got the sagging (or slumping) brain and the Chiari Malformation.
Now, I didn't have more than one problem or type of cyst in my head in the beginning. And my cyst had grown to 8x8x something. It takes up over a 1/3 of my brain. And of course now, I have the Chiari and slumping brain. I too; however, do have problems with cysts on my kidneys, as well as ovarian cysts. I have been told that some people are just cyst producers. Maybe you and I are. Sounds like it.
Please keep us updated. Look up "It's all in Your Head" sometime if you haven't already. I'm sure you will be able to identify with quite a bit, and if not all now....after you have surgery, etc.
Please take care and continue to be an advocate for yourself. Don't ever let doctors convince you of something that you know is not right. See other doctors if you have to. The key is knowing your own body and being able to relay what's going on with it, to the doctors. The more in tune you are with it, and can articulate what's going on, to the doctors, the more they can help you.
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Wow....if your story doesn't sound like mine....then I don't know whose does. : )
So sorry you have all this going on. I got the same runaround with doctors and trying to tell me it was all in my head. Have you seen my book, appropriately titled, "It's all in Your Head." If you haven't seen or read it, you may want to. You will probably recognize a lot of the story as your own.
I was made to believe the same thing. Got no where with docs and treatment and then finally had the fenestration. Then the shunt....4 months later, and then a different neurosurgeon following my shunt, let it over drain and I got the sagging (or slumping) brain and the Chiari Malformation.
Now, I didn't have more than one problem or type of cyst in my head in the beginning. And my cyst had grown to 8x8x something. It takes up over a 1/3 of my brain. And of course now, I have the Chiari and slumping brain. I too; however, do have problems with cysts on my kidneys, as well as ovarian cysts. I have been told that some people are just cyst producers. Maybe you and I are. Sounds like it.
Please keep us updated. Look up "It's all in Your Head" sometime if you haven't already. I'm sure you will be able to identify with quite a bit, and if not all now....after you have surgery, etc.
Please take care and continue to be an advocate for yourself. Don't ever let doctors convince you of something that you know is not right. See other doctors if you have to. The key is knowing your own body and being able to relay what's going on with it, to the doctors. The more in tune you are with it, and can articulate what's going on, to the doctors, the more they can help you.
Take care of yourself.
Maria
January 19, 2013 - 6:23pmThis Comment
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