Aa
A
A
A
Close
Chiari Malformation Community
5.21k Members
Avatar universal

Nystagmus

Hello, I recently had an MRI done and was told I had Chiari Malformation. I was told that i had downbeat nystagmus because I have been having problems with daily activities. I use to be really into sports and able to participate in physical activities. But since I have had serious problems with balance I haven't been able to do any of that. Also problems such as balance, eyes bouncing back and forth, sometimes headaches, and trouble having a good sleep. I just want to know has anybody else had these problems, that has had the Chiari Decompression Surgery?
31 Responses
12573102 tn?1431701617
YES!!!!  I had all of those symptoms plus more!!!  I had a downbeat nystagmus & compressed optic nerves causing visual distortions prior to my surgery (top half of words would be smeared & bottom half of the words would be normal).   My vision for the most part is back to normal, but I do require reading glasses.   I also had hearing loss to my right ear which has returned to normal.   Make sure that you find a Chiari specialist before considering surgery.  There are so many things that need to be ruled out & also many things to take into consideration before having the surgery...........there are many risks that come with "brain surgery" (it is considered brain surgery but they don't actually cut on the brain)!!!  Surgery is NOT necessarily a quick fix.   I had to have 2 surgeries within 9 weeks of each other due to complications.  Also symptoms do reappear at some point regardless of the surgery since the Chiari will always be there.   Good luck & make sure to educate yourself as much as possible!!!  Hope this was of some help!!
Avatar universal
Yeah I have seen the specialist I have been doing alot of research as well
Avatar universal
Yes, I've had those symptoms.  I was also very active, loved to run and mountain bike.  I got severe headaches in the back of my head with mountain biking.  I started to first notice a problem with my balance while running, until one day I experienced a vertigo attack after running.  I also got jumpy eyes, my right side of my face would twitch badly, not sure if that was making my vision seem jumpy.  My near sighted vision has also worsened.  My balance continued to get worse, not to the point of falling down or anything, but I just can't feel the ground properly if my activity levels go up.  I haven't attempted any form of exercise in a year.  I will be having surgery in a couple months after a long journey of trying to figure out what was happening and being told by numerous doctors that I have anxiety and that chiari can't cause my symptoms.  My only advice is to see a specialist who really knows chiari and can recognize the clinical presentation.
620923 tn?1452915648
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

As you can see you are not alone in the symptoms you have been having......

Make sure you are tested for ALL related conditions as they can affect the outcome should surgery be an option for you.

As one poster mentioned above surgery is not a cure or fix for ALL your issues/symptoms but it can help reduce some of it and get you a better quality of life.

I do have related conditions and it took longer for me to feel more "normal"...but it was all worth it and I would do surgery again if needed.

Making sure you have the right Dr is key...see a few, compare them and go with the one you are most confident and comfortable with.

Keep us posted on your progress.
9432311 tn?1432825085
Hello. Like you mentioned in your post, my activity level has been modified. Before my diagnosis (and 2 surgeries) I was running and training for half marathons. I completed 2 before symptoms made me seek medical help. I had been a competitive athlete all my life, so I had to find a way to continue to feel active. I can no longer run;  however, I have done some 5k races since my last surgery in April. I walk, and I finish before the slower runners. The same feeling of satisfaction I got with running is not there, but I can feel like I am part of the game.et us know about your thoughts.
Avatar universal
How long did it take you to feel normal, and did the surgery fix your balance problems?
Avatar universal
what all did the surgery help you with, what was different after the surgery?
Avatar universal
Do you feel like running caused your symptoms to get worse? I ran a 10 mile race last October and by November 1st, my symptoms got much much worse. Fast forward to now and it's crippled me. I have MRIs planned for the next two Fridays to check what's going on. Desperately hoping for some relief. I feel so defeated because
Avatar universal
not sure why I was cut off midstream. Anyways, I had recently lost 30 pounds and felt the best I had in years when my symptoms got worse. I've since gained back all but 13 pounds because I've been afraid to work-out. My gait has been affected and I have terrible palpitations on top of the worst pressure headache.
620923 tn?1452915648
COMMUNITY LEADER

  Hi...my balance issues have improved over time.....I am 6 yrs post op....and each yr I have seen a big improvement so it is not something that is immediate....and if we are patient and do not rush to get back to a "normal" lifestyle I feel we all can see and continue to see improvements with this surgery.....and I must add we need to have the right Dr....as not all Drs are aware of the related conditions and they can have an impact on how we feel, and heal post op.....so make sure ALL related and non related conditions are ruled out.

Post op changes....right after surgery there is a feeling of WOW I am me again....but some of that is the change to the flow and meds....and that too does not last....but as we heal we can feel that way again....

Since we are all different and dealing with different issues and we all handle pain differently it is hard to use another's experience and hope that is how our recovery will be....best bet....look to how you handle pain and recovery....can you be patient and wait to do things and allow others to help? This is most important post op....we can not rush recovery...as it can take up to 2 yrs for the nerves to heal and that can affect balance....
and a few other things...and the best advice I was given....listen to your body...if you have pain after a certain activity...avoid it for a while...or allow yourself time b4 and after to recoup....we tend to need more time to rest up after we do things even b4 we have surgery and this will continue post op....no matter how good you may feel post op...you will need to rest, rest and rest some more....the only thing you should do is some walking and the neck exercises given by the Dr.
Avatar universal
Thanks for the advice I will keep you updated on everything
620923 tn?1452915648
COMMUNITY LEADER

  Good ! I look forward to more updates : )
Avatar universal
Does the surgery change your way of thinking afterwards when healed..
620923 tn?1452915648
COMMUNITY LEADER

  Hi....that depends on you.....are you a willow or an oak?

I am a willow....I go with the breeze....otherwise I know I may break....that does not mean I am a push over....but you get the drift....

As for me, I was more easily upset b4 surgery....I feel more happy go lucky now....as I do feel so much better....that does not mean I am healed 100% ... .as I do have other related conditions....

Not sure if any of that was what you were asking....
Avatar universal
like it doesnt permentally effect you brain and how you process things
620923 tn?1452915648
COMMUNITY LEADER

  I don't believe so.....I do work on projects to exercise my mind and keep busy,,,, and I do have my moments when I still have issues finding a word here and there but I am told that is "normal" for my age...lol...

I may always have processed things the way I still am doing so, so I can not say it changed,,,,but I feel like I am much clearer then I was when I was in grade school....

Surgery releases the pressure being put on our brain, spinal cord and brain stem....so we should get clearer...Key is having the right Dr...so do research !
Avatar universal
ok thanks for the info...I really appreciate it
620923 tn?1452915648
COMMUNITY LEADER

  No worries,,,,,I also believe to have a positive outcome, we need to keep a positive outlook <3
Avatar universal
I will be having Surgery Friday, I don't know when I will be able to get back on here because I don't know how I will feel after. But I know that I am very nervous because I have never been through something like this. Just keep me in your prayers!!
Avatar universal
Wow, that was fast.  Good luck with surgery.  I will be having mine in October.  I wish you much success and a fast recovery.
620923 tn?1452915648
COMMUNITY LEADER

  Hi...wow that was fast.....since you are not sure if you will get back on here b4 hand I hope posting a Prayer thread will be ok with you???

Sending you all the best.... <3
Avatar universal
my appointment actually got moved to september 11th.
620923 tn?1452915648
COMMUNITY LEADER

  What appointment is that ?
Avatar universal
Wanted to thank everyone for their support, im 3 weeks post op. I feel good im not quite 100% but today was my first day without taking any meds. The pain was quite severe right after surgery I needed pain meds about every 4 hours, I went a whole 3 days without eating much in the hospital. But I was in the hospital for 6 days (not fun) lol. But once I got home I was able to get better sleep. I started back on a regular eating schedule when I came home. I was still taking heavy meds daily.After surgery I was very sensitive to light and sound. Just last week I tried to drive and realized that was a bad decision lol, everything was a shock for me since I had been on best rest for two weeks. But I just wanted to update you guys on my recovery.
Have an Answer?
Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1331027953
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease