Balance issues
Posted , 3 users are following.
Hi all,
I just recently had C-toma surgery like 3 months ago on my left ear. Everything went fine but I am still having balance issues. It is scarying me that this could be something I have to deal with life and won't go away? I can do exercise, walk, jog, but I'm just baring with the issues sometimes. It got better from the first week but ever since it is just staying the same. Maybe it is still recovering/healing? Do I had to do more therapy exercise? Or maybe I'm someone who might take a long time (like a year or so) to get my balance back?
Next week will be another surgery for me on my right ear this time. The middle and inner ear and all the bones inside including the coclear will have to come out so I'm going deaf 
Could have more balance issues too now. Hated waking up to that dizzy and naseua world again...worst feelings ever.
Kind of stress about the 2nd surgery. I was thinking of not doing it but than I don't want to end up dying later on in life since the disease has already eaten most of my bones in my middle and inner ears. Life sucks!!!
Thanks all!
0 likes, 7 replies
Mipam biie
Posted
Hi Biie,
I am very sorry to hear this.
Mostly they'll go for more brutal surgeries in terms of simply taking things out when you keep having infections in your ear. It really depends what the first surgery did. Did they have to touch your semi circular ducts that keep your balance?
Yes, dizzy and nauseated is super gnarly. I had it right after surgery and the first week mostly. Even though in my case my ear was completely full, everything was taking out and most stuff was preserved, with some reconstruction done.
I asked a ton of question on my surgery.
I went back last week as I dont hear a lot still, still lots of fluid behind my eardrum.
The Dr said that in my case he needed to be more careful, because he tried to preserve as much as possible. When everything can come out, it takes way less time he said. It's for me about 2.5 months ago that i had surgery and i do not have balance problems. But as I said, it really differs per person and if some of your semi circular canals were affected. They can repair them and stuck them, but it'll affect your balance. I would ask exactly what was done as I did as well.
In your case the Dr had to do more scraping along side these bones, or saw that they were affected by your cholesteotoma.
It is indeed, very important to do something about cholesteotoma asap, for else they eat everything away. I'll stay alert for the rest of my life about it now, as if this comes back it needs to be taken out quick as it'll eat more away.
I can feel your anxiety about your second surgery.
Ask careful what was affected and likely you'll have way more balance issues right after the second surgery. The first week will be tough. I'll be thinking about you.
If the inner ear bones need to come out, how about your semi circular canals, will they stay? If not how will you have balance?
It sounds really drastic and a last meassure to me, making sure you won't have any more infections. Will a canal wall up or down be done as well?
Is so much eaten away already?
Thanks,
Reinoud.
biie Mipam
Posted
What the doctor told me was that everything will need to come out from the middle and inner ear. I ask her if everything means all the bones, etc and she said yes. My left ear that had surgery was not as bad as my right ear which I'm going for the 1st surgery on the right. I meant 2nd as in 1 time on the left and this time on the right. Left ear had the canal wall up and down surgery...not sure about this right one though. I've had infectons when I was very young and didn't get it checked until this year and they told me that the cyst has already eaten away most of the bones in my right ear so that is why they will be taking everything out.
Doctor told me that my left ear will compensate and help balance out my right in time but don't know how that will work. I will surely ask about the semi circular canals but I'm sure those are going to get taken out too since the doc is saying "everything". So, I'll be deaf on my right and after that I'll probably have more balance issues. But, hoping for the best and can't worry about it too much.
Thank you for your help!
biie
Posted
Mipam biie
Posted
Hi Biie,
It's nice that your Dr told you that your left ear will compensate, but right now you already have balance problems after the surgery in your left ear.
In addition, all bones, the choclea and semi circular ducts will have to come out of your right ear. Meaning, no balance can come from that side anymore. What exactly did your Dr scrape off in your left ear? What did he/she have to do to the semi circular ducts to get rid of your cholesteotoma in your left ear? I do not believe it was nothing, or else you wouldn't have issues with your balance now after three months.
Yes, hoping for the best is best to do, but asking more questions never hurt. Like why you still have balance problems after the surgery on your lefy ear only. Thing is, if you didn't have problems before your surgery, they must have been caused by the first surgery.
I wish you all the best and strenght through this process.
I hope you've got someone that can help you after surgery with walking etc. Thanks,
Mipam.
biie Mipam
Posted
Hi Mipam,
Well, before my surgery I did have some balance issues right after a couple of bad vertigo I'd had for 2 weeks. I started getting dizzy and had to rest/lay down for 10-20 mins and it'll go away on those 2 weeks. My balance wasn't as bad as now but I couldn't run across a big log without falling off lol.
Now after the surgery it's gotten worst to the point I can't play sports. I can play but I'll probably wobble all over the places. If I sit still or stand still everything is normal but once I start to make quick movements than that is when everything in my head starts wirling around. I can drive but once I go onto bumping roads it'll be like your drunk.
Somehow I know I'll have balance issues and I've ask my doctors already will my balance come back, etc, etc...she told me yes. But, I have not asked her about what she scraped out from my left side. I'm pretty sure she scraped out some bones or whatever because I have very bad cholestetoma on both my ears for 20+ years so maybe that is why. Except my right ear is worst, and all the bones have been eroded by the disease to the point of nothing can save it. Maybe that is why my semicircular ducts is not even functioning or working on my right side.
I think everything will be okay. I'm sure there are peoples out there without semi circular ducts, cochlear, etc and they are able to live a normal life.
Thanks for your response!
nick23731 biie
Posted
Sorry to hear of your condition. My story may help you regarding the balance side of things. I had perfect hearing until I got a freak infection in July last year and as a consequence had cholosteatoma with the infection also and lost full use of my hearing in my left ear and my balance nerve was eaten away and my cochlear completely ruined as were my ossicle bones. I suffered pretty bad vertigo for a few weeks when I first got the infection. I had the surgery in March this year and it went well besides my balance and hearing. Just use my right ear now which is good touch wood. In general life I am alright with balance though I do struggle with sport and exercise. I play cricket to a decent level and unfortunately my balance has hindered me to play at my best. I do find when trying to balance in exercise to keep your eyes slightly focused to your good balanced side and this will counter balance you much better. For me it is now a check up MRI each year and keeping my ear dry to be safe.
All the best and hope you make a good recovery for your next op.
Nick
biie nick23731
Posted
Hi Nick,
Thanks for telliing me your story. Gives me reasons for hope and live a normal life
It is harder to play sports now and do exercises but just got to fight through it. Hopefully my 2nd OP won't stop me from doing what I love (sports and driving).
Good luck to you too in the future!