brain stem is bent

[burdzmom]

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

[Wyssa]

I had very similar symptoms and I was diagnosed with Sara Syndrome which is related to Chiari at the Chiari Institute. My brain stem is bent as well. I recommend talking to a chiari specialist if you are unsure.

[selmaS]

  Hi and welcome to the Chiari forum

The poster you addressed your comment to is not currently an active participant...you can send a PM (private message) which will generate an e-mail notifying them someone is trying to make contact.

Did your wife also get a DX of Chiari? The members here have Chiari as a primary DX and then some have these related issues/conditions.....

Pressure on the brain stem is a concern, so I understand how you both feel...finding the right Dr is key as with any DX or condition.....

Just wondering what all might be involved or going on with your wife.

[RyeC]

Hi ..my wife just found out today that her brain stem is bent ....she was driving one day an almost blacked out, she was able to pull over .....ever since then she has said she doesn't feel right....her vision ....balance...short of breath at times....light headed.....went to all kinds of doctors. ....till today when this doctor saw what all these problems were from....he said its fixable which is definitely a huge relief. ....we are very scared about this surgery as anybody would be. .....is this similar to what you had? And how was the procedure. ...

Ps ....i know its been a long time but just trying to find some information.

[lu7997]

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.

[blondeballerina07]

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!

[selmaS]

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"

[lu7997]

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

[Givenstrength]

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