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cerebellar ptosis/ brain slump
by journey119, Oct 02, 2009 06:30PM
Hi, I had decompression surgery in 2005 and a cervical fusion in 2006. I am now dx w/ cerebellar ptosis.
I went to see a different neurosurgeon last week. He said due to the fusion hardware it is very unlikely a crainoplasty or box expansion could now be performed. I went undx for 20 yrs. Finally thought I was going to get my life back now I am worse than before. The pain and head pressure are horrible. the pain never goes away. I have been on several narcotics and nothing works.
Does anyone have this same condition? I would appreciate any feedback...please
journey119
I went to see a different neurosurgeon last week. He said due to the fusion hardware it is very unlikely a crainoplasty or box expansion could now be performed. I went undx for 20 yrs. Finally thought I was going to get my life back now I am worse than before. The pain and head pressure are horrible. the pain never goes away. I have been on several narcotics and nothing works.
Does anyone have this same condition? I would appreciate any feedback...please
journey119
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Since u went to a NS that was not the original surgeon I am sure it is bcuz of ur dx.....and the reason the second dr refused u is not bcuz there isn't something that can be done, but many will not take on something started by another surgeon...so, u do not have a "virgin" back or neck.....there r some chiari specialists willing to help those that have been worked on b4....Dr Oro in CO and TCI in NY will help when most others will not.
From what I understand ur condition is the result of ur decompression and the area was made too large and it allowed ur cerebellum to fall back down.....u need a dr that will use possibly the titanium mesh plate to hold it up in place.
There may have been one other member that I can remember, I will see if I can find the info....
let us know what area u live in and we can try to find a way to get u help.
"selma"