syrinomyelia and Chiari Institute

January 8, 2008

I joined a couple of weeks ago and I have been reading all the

messages posted hear. It scares me to know how many people suffer so

much from this and all the symptoms and the wey this turns lifes

around. But it gaves me confort to know that I am not alone and as bad

as I can feel it can always be worst.

I have been wanting to ask everyone about some symptoms I have had

since my decompression 3 months ago. It's mostly when I wake up,I feel

a very strange numbness in my pinky finger, sometimes 2 fingers,

others both pinkys or my right leg. This numbness feels weird, like if

my finger was bigger and it feels diferent when I try to move it. It

has happened that I wake up and I can move a pinky, some fingers and

after a while I start to feel the numbness and began to move it again.

Once I woke up without being able to move my right hand which

obviously scared me a lot. My doctor tells me nothing, his answer to

everything is " I have done everything that can be done " , even when

after investigating i realised he did not treat my syrinx which its

the cause of paralisis.

Which leads me to the second topic of this

message, I have been looking for a good doctor, a specialist that can

answer all my questions, try to do something for me and does not treat me like a

hypochondriac. It has been difficult since every doctor I meet tells me very

differnt things. I do not even know how big was my hernia or what exactly was

done to me how he decided to decompress why he didnt treat the syringomyelia,

etc.

I want to go to the Chiari

Institute but I have found it hard to contact it and I wonder about

the cost since I dont count with enough resources to pay for expensive

(or not so expensive) treatments specially outside my home country,

which includes tranportation etc. Anyway I thought I could volunteer

for a study and that way pay for treatment but I dont know if its

possible to be treated in TCI. I hope you can help. I also have time

limit since I must start college this year at the latest before it

gets too complicated..I already lost my biggest dream because of this

I dont want to risk anything else. I look forward to your answers.

Thank you!!

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