Post surgery balance issues

[Otter78]

Question for the group, is the off balance feeling just part of what the new normal is and should I just figure out ways to cope/deal with it?    I have heard Tai Chi is great for helping to restore balance issues but I have yet to really pursue it.   I am just looking for a little re-assurance from folks that have been in this position.

Current state (Spring/Summer 2022)
18 months post-surgery I am still feeling off balance.   I am doing some follow up testing with my local ENT as my right ear is feeling full.   However, I don’t see my local ENT until the end of July 2022 to review all my test results.  (audiology and balance test)

How my AN journey started:
I was diagnosed with an Acoustic Neuroma in March 2020 in my right ear after experiencing some off balance and feelings that I was floating when walking.  The tumor was 1cm. I originally consulted with UCSF and they recommended a wait and see approach.  A friend and colleague recommended UCSD with Friedman and Schwartz and they quickly took me in.  During a follow up MRI in September 2020 the tumor had grown .25cm so they recommended surgery ASAP.  My surgery (Middle Fossa) was scheduled for December 2020.   I should state they were able to salvage my hearing.  In October 2021 my post-surgery MRI came back clear and I was told I don’t need another one for two years (yah).

[donjehle]

Hi Otter78!

First of all, thanks for making your first post, and welcome to the ANA Forums!

I heartily recommend vestibular therapy before or after surgery.  But it's important to find a trained vestibular therapist and not simply a physical therapist who has been trained on helping people have their balance.  Their training is more geared for those of us who are older and lose balance because of age or injury.  But a vestibular therapist is trained on how to help those who have acoustic neuromas or other brain issues.  I was falling down and using a cane before my vestibular therapy treatments.  Afterwards, I don't use a cane at all, and I haven't fallen since my therapy.  In my initial assessment, I would have fallen multiple times except for the safety ropes which kept me upright.  But now, the only times I have problems with my balance is when I am very tired.  You might ask your ENT if he has a recommendation for a vestibular therapist in your area.

Best wishes!  And Congratulations on your great MRI results!
Don

[Otter78]

Hi Don,
Thanks for replying. I forgot to mention I did two rounds of vestibular therapy.  The first round was 6 weeks after my surgery and I did another round 4 months later. 
I try and walk or ride my bike everyday but I have not been diligent on doing my therapy at home.  This is going to sound naive but I think deep down I was trying to get back to what I thought was normal and not think about my head still needing time to recover. 

[Greece Lover]

Otter,
It could be you're still recovering. I'm over five years from surgery and still have ups and downs. I'm a professor at a university with a PT program and I was a special guest last fall in a class specifically on vestibular PT.  They did all sorts of tests on me.  I think generally my balance is very good and no one would notice my issues.  But, the professor of this course told me she thought I could still improve my balance even further if I kept doing certain exercises. So, I guess my point is that at this point, it may be less about "recovery" than just overall need to engage and improve vestibular performance.

We just came back from vacation in Banff, Canada.  When we visited the glacier at the Columbia ice field it was about40 degrees (F), raining, and super strong wind.  In these conditions my balance really suffers. I had to hold my son's hand to get back to the car!  Worst episode I've had.  Once I warmed up I was fine.

good luck!