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Chiari Malformation Community
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Avatar universal

mild Chiari type I, do i need surgery? eye symptoms mostly, why?

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
8 Responses
12573102 tn?1431705217
Hi......I just wanted to let you know that I am so sorry you are having so many problems.  Many of your symptoms can be caused by Chiari, however they can also be caused by many other conditions too..........It is very important to see a Chiari specialist whom can tell the difference.  The main symptom with Chiari is headache, but it is possible that you have lived your whole life with them & don't realize that you have them.  I just wanted to say that I understand about the vision.  I had distorted vision (letters moving while trying to read, top portion of the words being smeared) & blurred vision which both were caused due to my optic nerves being compressed with the Chiari.  My vision would get worse with the headaches & slightly better with rest.  I always had what I called eyeball pain which was worse in sunlight.  Make sure to wear sunglasses & avoid direct sunlight if possible until seen by MD.  I had to see an Opthamologist that was knowledgeable in Chiari, but there was not much she could do.....Chiari needed to be decompressed.

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.
Avatar universal
I forgot to mention that i have extreme sensibility to light and when I am in the sun i feel blind because i cannot see anything. sunglasses dont help because then everything is too dark
Besides the strong pressure i feel behind my eyes like if something was pushing the eyes outward
Is it Chiari? why are my eyes and my memory being affected the most but i never feel headaches?
Avatar universal
i definitely feel a pressure behind the eyes. i went to two eye doctors just to see if it was the eyes but i guess pressure against the eyes would be explained with chiari.
i have feel feeling dizzy since 2007 and no doctor ever thought about an MRI... thats the saddest thing for me.

I have a question, what happens if the doctor says i cant have surgery because of risks or something like that?
I will just have to deal with the dizziness for the rest  of my life?
...
what happens when the person cant get surgery?
12573102 tn?1431705217
Sad part is that even people who have the surgery for Chiari don't always get complete relief of symptoms............sooooo with that being said surgery may not be your answer!!!!!!  I would suggest to make a list of questions b4 you see your NL to ask any & all questions that you might have about this.  Some people can live a happy life with medication & lifestyle adjustments if surgery is not needed.

The size of the herniation really does not matter AS much as the CSF flow...........if CSF flow is occluded then surgery can help.  A CINE MRI will be needed to determine that tho.  There is now what's called a Chiari Malformation 0 (herniation less than 5mm) which was not even recognized as an issue some years ago.  

Just know that diagnosis & treatment for this is usually not a quick process......so patience is a virtue despite feeling terrible!!!  Also know that you have lots of support here with your new Chiari friends!!!! :-)
620923 tn?1452919248
COMMUNITY LEADER

Hi and welcome to the Chiari forum.
As the above pposter indicated it's not the herniation's length,but if there is an obstruction to CSF flow and how it's affecting your overall health.
Finding the right Dr is key.
Know you are not alone.
Avatar universal
thank you guys

i have one question, does high blood pressure affect the chiari, does high blood pressure makes the symptoms worse?

I realized when i go out in public my symptoms worsen a lot. could anxiety affect you as well?
i always feel dizzy but if i am on public i lose a lot of my vision, i feel my face getting warm and red.
i think i have a lot of anxiety issues but i was wondering how that affects the chiari
thank you so much for the answers
620923 tn?1452919248
COMMUNITY LEADER

Many with Chiari have low B P but we are all different, and it's possible to have high B P. Anxiety can be due to Chiari.
Yes, high B P could cause symptoms to increase.
Being out in public made me feel worse too, noise,lights, crowds all triggers.
Avatar universal
I'm so sorry you have all this going on... It is a very scary thing.
A couple thoughts, I think you should be seeing a neurosurgeon not a neurologist. Neurologists don't seem to do much to help with chiari imo and they definitely don't do surgery. Seems like a wasted visit. The  CINE MRI/CSF flow study in a huge determining factor. If your CSF flow in affected then that it a big deal. Your symptoms sound very familiar to me... Many of us had all kinds of crazy symptoms. But until you know... Stressing won't help. So do like she said, write down all of your questions... This should be something you always do as many of us have memory issues... Helps us focus and not miss things. I keep a memo in my phone and just add to it as I go. It's a lot to take in so pace yourself. Try not to alienate yourself too much... If you do need surgery you will need help. Just be solution focused with the Dr.if they say no surgery then ask how you relieve the symptoms. Good luck!
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