Aa
A
A
Close
Avatar universal
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
Cancel
8 Answers
Page 1 of 1
Avatar universal
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
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
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
620923 tn?1452919248
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"
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Avatar universal
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!
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Avatar universal
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
620923 tn?1452919248

  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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
7948950 tn?1421656329
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.
Comment
Cancel
Comment
Avatar universal
Comment
Comment
Submit Comment
Your Answer
Avatar universal
Answer
Know how to answer? Tap here to leave your answer...
Answer
Submit Answer
A
A
Recent Activity
Avatar universal
Blank
5665 commented on Think LYRICA was culp...
Jul 21
620923 tn?1452919248
Blank
soccero, and selmaS commented on soccero's status
Jul 11
979826 tn?1389039958
Blank
soccero feeling absolutely horrible ;( Comment
Jul 09
Top Neurology Answerers
620923 tn?1452919248
Blank
selmaS
Allentown, PA
1306714 tn?1327260680
Blank
linnielou232
muskegon, MI
7530528 tn?1428275172
Blank
AKC_75
TX
Avatar f tn
Blank
KerriC1
979826 tn?1389039958
Blank
soccero
germantown, MD
Avatar f tn
Blank
lasel22
Chiari Malformation Community Resources
RSS Expert Activity
233488 tn?1310696703
Blank
Marathon Running Done Over Many Yea...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
233488 tn?1310696703
Blank
New Article on Multifocal IOL vs &q...
05/15 by John C Hagan III, MD, FACS, FAAOBlank
748543 tn?1463449675
Blank
TMJ/TMJ The Connection Between Teet...
01/15 by Hamidreza Nassery , DMD, FICOI, FAGD, FICCMOBlank
Top Neurology Answerers
620923 tn?1452919248
Blank
selmaS
Allentown, PA
1306714 tn?1327260680
Blank
linnielou232
muskegon, MI
7530528 tn?1428275172
Blank
AKC_75
TX
Avatar f tn
Blank
KerriC1
979826 tn?1389039958
Blank
soccero
germantown, MD
Avatar f tn
Blank
lasel22