This may be a stupid question and I'm sorry but I can't seem to find anything that definitively says whether the balance difficulties are permanent or not. I've had two gent injections but it was lousy before and still lousy. And when I first get up in the morning, I'm surprised I haven't fallen yet. It's really bad when I first get up. Anyway, so my question is are the balance difficulties permanent? Even in remission?
I haven't got a MM diagnosis, but my balance problems change over time, improve and then get worse. Mine also seem worse in the morning. It's been better since day 3 of lauricidin, but it's too early to tell if that's what is making the improvement.
I thought with any gent/steroid injections you need to retrain the other sides balance systems with vestibular retaining exercises and this can take some time like weeks, have you been put on any exercises to help in this area. I'm interested as grommets and steroid drops might be my next step to reduce my if being on AV's and Lauricidin does not help
No, there was no mention from the doctor at all about any sort of vestibular rehab or exercises. I knew my balance would be off after the gent shots but one, I thought it would be over by now and two, geesh, I look like the world's klutziest and drunkest woman.
might be worth asking about the exercises, also have a look in data base or google as I think it will assist in retraining the good side
Retain your brain by walking as much as possible. Take a walking stick or cane if you need to but walk, walk, walk.
Having had a VNS, I agree with June. Walk and then walk some more. Challenge yourself. Walk on all kinds of terrain. You may be inclined to do nothing, nap or rest all the time, but that is doing nothing to help your good side take over for what you have lost from the gent injection. Your balance will get better, but you have to do what it takes to get there.
I just started (again) with a really good Balance therapy program at a hospital in our area in the Midwest. I went there after my shunt surgery and they really helped me. Getting out and walking or going to a gym and walking on a treadmill if you need something to hold to also helps. But I'm back (first time last week) and have some exercises to do at home. The therapist is the same one I had in 2012 and really good. He's patient and says my brain has begun to 'think' the way it is now thinking so it seems natural to it and the purpose of therapy is to 're=train' the brain to think like it's 'supposed' to think. Worth checking in to--the balance therapy somewhere in your area.
Thank you, everyone for all the info. I did some research on exercises I can do until I go back to the doctor and ask him about it. And I plan to start walking as much as I can. And you're right Cheryl, all I seem to feel like doing is sleeping or resting all the time. I'm exhausted. I'll just have to push myself past it.
Moody, The advice you're getting is spot on. I've read many times here as to improve balance issues walking is very important. I remember someone telling me once that if I go to the mailbox and back to start, it's a start. As for the fatigue. It's your body's way of saying you need rest. I'm not saying to give in to it because you know I don't then I have to. It's better to achieve a balance. I usually feel ok in the mornings so I try to get things done then. You know I set a few things that I want to get done each week and I don't always get to it. I'm not pushing myself anymore. If I can do what I must and I need to rest in between I do. Even though our medical solutions are not the same some of the solutions are.
I posted this once before for you and I will say it again....I know first hand you have to walk, walk, walk and when you think you can't just take a few more steps, you won't regret it. I know it is not easy but truly it is the only way you will conquer this, just do it!
I remember now being told to walk a lot here but I had for some reason completely forgotten it. I forget a lot lately. Post it notes are my best friend. LOL
Todays balance was terrible!! I was out a lot of the day by myself and probably should have taken the cane. I just feel embarrassed using it. I'm 42. I know that's ridiculous. Yesterday I tried doing some of the home exercises I found online. I could do the ones sitting down fine with the exception of what feels like a minor issue with eye tracking and things trailing behind me. So, I thought I'd move on to the standing exercises. Ummmm, NO. It was awful. My husband "spotted" me and I kept at it a little bit. He said not to do the standing ones unless he's here. Not safe. Definitely need some more improvement.
I was 49 when i lostmy balance and started by using my 80 year olf mother's walker with wheels in our driveway. Then i moved up to a cane, then just kind of walked like i was tipsy. But i walked a mile within two weeks of my surgery. Now and for many years, i have ridden a two wheeled bike, often for 15-20 miles at a time. I still do not ride on roads with traffic, just trails. Do everything you can do safely. Stay off ladders and roofs and away from traffic. Otherwise, go for it.
So Moodymom you got gent injections not steroids. The purpose of the injections is to kill the balance organ and get the brain to change how you balance yourself. Did you try the steroids first?
No I did not try the steroids first. I asked about it and he told me he didn't think it would help. I know what the gent shot does but I guess I was under the impression that it would not take very long to adjust to the change. I just wasn't aware this was probably months worth of adjusting instead of a week or two. I know, naive. I still don't regret getting the injections. I have had some mini episodes but nothing as horrible as the attacks I was getting before the shots. I'd give my right arm not to have those attacks like that again. I'll keep at it. I know now it will just take longer to improve and adjust.