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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?
Wow! You made a great turnaround! So glad to hear! My surgery was Sept. 3rd & I'm still having a great amount of pain and dealing w/ a large hard "mound" (what used to be a very squishy, obviously fluid filled "sack" which I noticed 2days out from surgery, while still in hospital, but now it's a solid, heavy hard...mound...don't know how else to explain it). It's exciting that you're doing so well so quickly. Do be careful, as I've been told that while you can feel great for a month but push it too hard...seems likes there's a fine line & sometimes we don't know where that fine line is...but once crossed, some activities can kind of push us down&make us take a time out.
Keep us updated on your progress! And congrats to you!!!'
Keep us updated on your progress! And congrats to you!!!'
COMMUNITY LEADER
Yes, I will always have the scar.....my hair has grown over it to cover it but I can feel it....and I know it is there.....
COMMUNITY LEADER
Congratulations on becoming a Zipperhead....!!
It can take longer then 6 months to fully recover....as it can take the nerves up to 2 yrs to heal completely....yes the incision may be healed in that time frame....
Each year that passes since my surgery I do see more benefits and see how much better I am...so you can continue to heal over a few yrs ....
We are all different as to how long it takes to heal outwardly and internally.....and we should all take clues from our own bodies as to what we need to do or avoid to help in the healing process.
Prayers for continued healing <3
yes I have, you won't notice them right away you will slowly feel the progression, the doctor told me it could take up to 6 months to fully recover but you will see major improvements once the pain goes away
Glad to hear you are doing OK. I was wondering how your surgery went, I'm having mine in 2 weeks. Do you notice any difference in symptoms yet?
Hope you continue to feel better and get back to normal.
Hope you continue to feel better and get back to normal.
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.
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
Wow, that was fast. Good luck with surgery. I will be having mine in October. I wish you much success and a fast recovery.
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!!
COMMUNITY LEADER
No worries,,,,,I also believe to have a positive outcome, we need to keep a positive outlook <3
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 !
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....
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.
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.
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
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