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-   -   I am not sure where to post (https://www.neurotalk.org/general-health-conditions-and-rare-disorders/53004-am-post.html)

Maile 08-26-2008 05:36 PM

I am not sure where to post
 
Hello, I am not sure where to post.
I have an arachnoid cyst but I have so many complications I am looking for other things directely related to this . I have not had a doctor's help in over two years, they keep sending me away scratching their heads.
can anyone help me? I read about something called arachnoiditis, does any one have this?
my complications are head pain, head pressure, dizziness, vomiting, balance problems, seizures x3, numbness, tinigiling, light sensitivity, paralisise x 50 on left side, heat sensitivity, eye bouncing, muscle spasms, tremors, twicthing,and others. if anyone has any ideas please let me know.
thank you

Jaime_S 08-26-2008 10:48 PM

I don't know that I can help, but I can say I know what it feels like (or felt like, in my case) to have an Arachnoid Cyst!
I had a large posterior fossa arachnoid cyst, and had many of the symptoms you have, but I had cyst fenestration surgery a few years ago, and that was successful...so far.
All I can say is to try and find a good Neurosurgeon that will help you, if they won't, then keep on looking for one that will. I can't reccomend any neurosurgeons, because I live in Aust. You shouldn't have to put up with all those horrible symptoms for that long. Some sound quite scary to me, because I haven't experienced seizures or paralysis. But the pain, pressure, dizziness and balance problems are bad enough to have to try and cope with!
:o
~Jaime~

Maile 08-28-2008 12:59 PM

thank you for your encouragement
 
Thank you for your encouragement, I have actually seen 3 neurosurgons and have been told it is two risky to do surgery. one says it will just grow back which after reading other peoples stories and have cyst other places I know this is a great possibibility.

and the other two agree that it has a boney remodeling around it and to get to it would probably put me at risk to be permently paralised.
I am still trying though to find a doctor to treat my symptoms and not to brush it away. I know I need help.


Quote:

Originally Posted by Jaime_S (Post 355669)
I don't know that I can help, but I can say I know what it feels like (or felt like, in my case) to have an Arachnoid Cyst!
I had a large posterior fossa arachnoid cyst, and had many of the symptoms you have, but I had cyst fenestration surgery a few years ago, and that was successful...so far.
All I can say is to try and find a good Neurosurgeon that will help you, if they won't, then keep on looking for one that will. I can't reccomend any neurosurgeons, because I live in Aust. You shouldn't have to put up with all those horrible symptoms for that long. Some sound quite scary to me, because I haven't experienced seizures or paralysis. But the pain, pressure, dizziness and balance problems are bad enough to have to try and cope with!
:o
~Jaime~


Mick 08-29-2008 05:32 PM

What does fenestration surgery mean? Removal of the cyst or insertion of a shunt?


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