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brain stem is bent
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brain stem is bent

so im frustrated. cant find any info on this, so im posting here for my crew to help me find answers.
6 months post-op with continued pain and pressure on the right side of my head
constant ringing in my ears
unstable/gait issues
headaches
trembling left hand and unexplained muscle spasms
pins and needles in my left hand and foot
sleepless nights even while medicated
(i could go on)
.......................ruled out a CSF leak last week, but pointed out two possible issues
first, my brain stem is now bent as a result of the compression. (point facing back of neck) approx. 30 degrees (thats a rough guess)
could this be why i now have all of these symptoms? does it straighten out on its own? should i have concerns?
and second, i have an "abnormal" shape to my carotid artery in my head. . . . okkkkk.....so off for a CT Angio of my head and neck. Could this contribute to my instability feeling after i stand from sitting? Do i now have a whole new issue to be concerned with??
took me off Propranol, Diamox and another that escapes me at the moment - side note- my memory is TERRIBLE!!
input please!!

THANKS!!
jil
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Avatar_f_tn
Sorry I can't be much help to your questions but just wanted to say wow and so sorry you are having all these problems. I hope you can find some answers and some relief
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1063386_tn?1287882169
I don't know first hand but I would think either of those could cause significant problems.  I will do some research (if my computer decides to cooperate my phone is hard to nagavagte through medical sites ).  Good luck and sorry u are feeling this way
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620923_tn?1405964489
Hi...I have heard of there being a kink in the brain stem as a result of compression...not sure if it will straighten out  after decompression.....

I am sure the bent or kink in the brain stem is contributing to ur symptoms.....do u have a chiari specialist?

Have u been tested for autoimmune thyroid issues?....and had all ur vitamin and mineral levels checked?

"selma"
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Avatar_f_tn
Hi,

I had a bent brainstem, mine was bent at a 45 degree angle the first time seen and 53 degrees two weeks prior to surgery. I had many similar symptoms as you. Do you have an associated basilar impression or invagination? Because of the bent brain stem, and basilar invagination I had to have three other parts of my surgery than just the decompression. I was very iffy at first and thought of only doing the decompression and my doctor showed me research showing that 90% of patients with the basilar invagination who just had the decompression would have to have a second surgery, but that was only for basilar invagination, not just for a bent brains stem. That might be a good question to ask your doctor. If I can help with anything I will be happy to because when I was first told I could not find any information at all!
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1063386_tn?1287882169
I have looked and can't seem to find much infact it corrects me and redirect to brain stem injuries.    Sorry.   I will keep looking though. Maybe something will pop up. But I would talk with ur doc for sure.
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