Equilibrium/Balance recovery post-surgery

[toddnelson]

I understand we lose our vestibular nerve if we opt for surgical removal of the AN.
Can some people who have been through this tell me how hard it was for the brain to adjust (by this I mean equilibrium, balance, vertigo issues) with just one nerve?
Will the balance issue eventually work itself out and return to normal as the brain adjusts to getting signals from just one nerve? Or are balance issues just as bad, if not worse, post-surgery?

[MarlaB]

For me, it just takes time. My tumor was probably growing for 20+ years before they did the first MRI, so I had been compensating for a while. I did some vestibular therapy BEFORE surgery, and walked pretty well right after surgery, but as I get (ahem) older, my balance needs CONSTANT work and attention.

Wishing you the best.

Marla B

[Greece Lover]

I responded to your other post as well, but I will reiterate here that I found recovery to be pretty amazing.  it's tough at first, of course, but within a week or two I was walking around the block.  By 6-8 weeks taking long walks.  After that I was driving on a long road trip and riding my bike and hiking.  I do occasionally still have trouble, especially in cold and wind--it makes me jittery and my balance feels worse.  But very manageable. 

I also think PT can help (although mine was all post-surgery).  I am a professor and once a year I visit our PT school and the students do various exercises on me and tests, etc, and so I get some free maintenance as well!

[Midway1]

Initially walking is the first step. Dependent on your age, physical well being and motivation I would suggest finding a balance therapy group or therapist to get you on an efficient path. I attended the center for balance in Blue Ash, Ohio (Cincinnati area) for about 2 months going twice a week and practicing the walking exercises in my driveway twice a day everyday. I was off from work so I had the time and motivation. It’s a slow grind with results coming gradually over time.

Many of the exercises are different forms of walking, which include walking backwards, using a card in front of your face moving side to side or up and down letting your eyes follow the card while walking, juggling a tennis ball while walking, standing on a trampoline with head movements, and many more exercises you learn with the therapist. You start slow and then challenged as you go to get better. Everything focuses on strengthening you existing vestibular side that works and learning to ignore the side that does not.

I experienced fatigue often in the first month because my body was in “manual mode” all day with my brain learning to use one side of my vestibular system. One usually has two systems (right and left) which the body uses automatically.

A friend told me, “ Be an athlete!” and that stuck with me to push myself through the tough times of practice and failure. A skilled balance therapist will show you what to do and monitor your progress but you have to put in the work to have your brain signals realign and get your life back. It’s a journey and a mental game as well. You will get better as you go through the process of recovery. Be kind to yourself.

I would sit on the edge of my bed on each Sunday night and say to myself, “I’m not feeling any better” after a week of working of these balance exercises but the it’s just the process being so slow you don’t notice your improvement so hang in there. It took me about 3-4 months to start feeling like I could re enter my new life after AN surgery but then another 6 months to a year to go about my stuff and not think about it.

God Bless everyone who climbs this mountain.

[HawThorne]

Hi there, just underwent my own surgery for a larger tumor (ca. 2.8cm) a few weeks ago. From what I heard at the hospital, it very much depends on how much your balance nerve has already been damaged how you then end up feeling immediately after your surgery. They might do all kinds of tests to establish all that before the surgery - my nerve turned out to be barely working anymore, which turned out to be a blessing in disguise. The first few days post-surgery were rough, of course, but I was never as dizzy as I expected to be. I was super exhausted and vomited a few times, but I believe that was a side-effect of the anaesthetics wearing off, plus the morphine.

Also, the only way to get your brain to adjust, it seems, is indeed physical exercise. So they will try and drag you out of bed soon after surgery - a physical therapist showed up on day 3 in the morning, I believe, and I was given a walker, plus a comfy chair to sit on so I wouldn't be tempted to stay in bed all day. less than 1 month post-surgery and at home now, I do feel that I'm getting a little bit more energy back every day, plus my balance has massively improved. I was in a terrible state right before - very dizzy all the time, bouts of vertigo, unsteady on my feet, even managed to fall down the stairs a few days before the operation. Feel so much better than that already, the vertigo I felt if I tilted my head the wrong way is completely gone now, for instance. Plus I'm going for daily walks (6,000-8,000 steps) with the help of a walking stick, but feel like I might soon do without one. Also, managing light housework again, which was impossible for me just in January as I was so fatigued all the time.

I will be seeing a physical therapist regularly for a while now so I can stay motivated with the vestibular exercises I'm supposed to do. Personally, I'm so glad this surgery is finally behind me - they managed to get nearly the entire tumor out, and life finally is looking better again. All the best to you on your own journey!