hello everyone, just found out about this and I was hoping to get some support and some answers, i was just told I have this and i am very scared and feel very alone. i havent seen the neurologist yet so i am not sure what to think.
This started in 2007, I felt light headed and dizzy but it wasn't too strong, i did go to the ER but back then the doctors didnt say much. In 2013 it started to get really really dizzy and felt drunk a lot. I felt drunk every day.
I got a ct scan done but it didn't show anything. after a lot of tests I finally got an MRI and it showed I had this:
"cerebellar tonsils extended slightly below foramen magnum, mild chiari I malformation"
I know it is not much but I wanted to know, is this enough to require surgery? how does the neurosurgeon decide? is it due to the symptoms themselves?
My symptoms have been
Vertigo, loss of balance, blurred vision sometimes, Cannot focus vision, loss of short term memory. dizziness, loss of words, trouble speaking sometimes, numbness of legs. numbness of hands sometimes.
I basically feel like I am in a dream all the time, Like if I can't ever wake up. my memories of real events and memories of dreams feel the same now. a lot of missing pieces and a lot of hazy, blurry memories.
Are these symptoms bad enough for surgery?
I just wanted to have some kind of idea before seeing the doctor. I am really scared and I feel like my life is over because of my eyes.
I feel like if I was "Memory blind" when I look at something I can see all the details about it but when I look away i lose the memory of what I was just looking at. I Also feel a lot of pressure behind the eyes, like if something was pushing forward? is that a symptom of Chiari?
I do not get head aches, or ringing in the ears, I see a lot of comments about strong headaches and i see comments about ear ringing but I never feel headaches. but I never feel those. I never really feel neck pain either.
One thing that is very weird is that I feel a sense of Dejavu all the time, is that part of this? I read once that when someone has a feeling of Dejavu all the time, feeling like you know the future, it is a problem with the brain and some kind of dementia. I know this is really weird and I cannot ask a doctor but does feeling a Dejavu feeling have anything to do with this part of the brain affected by Chiari?
I just feel so alone, I am kind of a shy person so I do not know a lot of people and i feel more defeated and lonely than anything. I am scared about the surgery and i feel very depressed.
Any help would be incredibly appreciated
Try not to allow yourself to freak out about this!! I know its hard not to freak out bcuz its very scary, but your body/mind do not need the extra stress. Lots of us have to live with Chiari & make adjustments to our "new normal life". I am almost 8 weeks post op & about to have my 2nd surgery due to a CSF leak. :-( A positive attitude is always helpful!!! I pray that you find some answers soon & get some relief of your symptoms. Glad you posted here......you will have lots of support for sure!!!!! Wishing you the best.