What's the truth about balance after surgery?

[amye]

Hi everyone;

I'm so confused! I seem to be getting mixed information about the impact of surgery on balance function. As many of you know, I'm looking to surgical options because of my dizziness problems, yet I have read some studies suggesting that AN surgery actually causes/results in balance dysfunction. What's the truth? Are there people out there who went into surgery dizzy and came out better? This is what my prospective surgeon tells me, but I would love to hear this from someone who has been through it.

If there is a better place to post this inquiry, someone please let me know!

I am really struggling with decision making. Getting mixed information from different sources and don't know what to make of all of this.

Thanks,
Amy

[leapyrtwins]

Amy -

there are three nerves inside your inner ear canal - the hearing nerve (very delicate), the facial nerve (not as delicate as the hearing nerve), and the balance nerve (that truthfully I don't know a whole heck of a lot about).  Hearing nerves when damaged, generally never recover.  Facial nerves can recover (regenerate) but it takes time - some times lots of it.  The way I understand it, when the balance nerve is damaged, the body basically learns to adapt and compensate for it.

I wasn't dizzy pre-op, but I did have balance issues.  Nothing that was obvious to me, but I failed the tests my neurotologist had me do when I was diagnosed.

Post op I had big balance issues - the result of the docs messing around in my inner ear canal to remove my AN.  But in time my body learned to compensate and the big issues went away.  I'm not sure I can pinpoint when all that actually happened, but I know my balance was pretty darn good by 6 months post op.  Everyone is different, so it make take someone else more or less time than it took me.  I still can't stand on one foot without falling to the side though 
 
Although my balance is very good on most days, I do find that when I'm tired or stressed that my balance is effected.  I start in with the "drunken sailor" walk and sometimes even find my shoulder bumping into walls that I'm walking next to.

Jan

[Cheryl R]

Hello,   The vestibular nerve is almost always cut during surgery.     This then keeps it from working on that side.  The other side of the brain then learns to adjust for it and that is why for a while one has balance issues.  Some with dizziness and some not.  I have never been dizzy with ANs and I have had 3 tumors due to NF2.       Tumor location is a factor and probably why you have it.   Your other side may even be doing some taking over compensating.                     After surgery,you should improve.      You still may be dizzy for a while or may not and just have the off balance feel.  it may be worse when walking outside,in big malls that are brightly lit. just with moving the head back and forth.                   It does get better and being out and walking and moving the head helps.        In time you still may be a bit off in the dark or when tired.  Every person vaires.                    Many get back to their athletic activities they were in prior to ANs.   
                  Good luck in your AN journey,                Cheryl R

[Kathy M]

Hi Amy!

No wonder you're confused....this is a crazy journey!

I was told that post-op dizziness and balance depends a lot on how large your tumor is.  Mine was very large and my drs were right!  They said for larger tumors, the brain is already adjusting to the loss (or decreased efficiency) of the vestibular system.  In my case, my balance issues started a long time ago, so by the time of my surgery, my brain had already adjusted a lot to keep me upright, so I didn't really notice much of a difference after surgery.  I'm 4 months post-op now, and every day, my balance gets even better! 

If your tumor is smaller, most of the adjusting and retraining happens after surgery, but the brain is an impressive thing - it can learn all kinds of things over time - patience patience patience and practice practice practice!!!!  (At least that's what my surgeons told me and they have been right so far!!!)

Good luck!!

Kathy

[Jim Scott]

Amy ~

You ask a logical question and have received some excellent answers.  I won't risk confusing you any further by trying to elaborate on them except to add that immediate post-operative balance improvement is usually a circumstantial occurrence.  It is rarely completely spontaneous.   

At the time of my diagnosis, I had some serious balance issues and was so impaired that I almost toppled down the stairs in our home at one point.  My tumor was large but immediately following my surgery (which purposely didn't remove all of it) my balance improved.  I never felt dizzy.  It did take some (balance) exercise and lots of walking and challenging myself to eventually regain my normal sense of balance.  Even now, almost 3 years post-op, my balance is not 100%, even with all my work.  I figure it's likely close to 90% - and I'll accept that (and no less).

Unfortunately, as the previous posts demonstrate (with accurate information) there simply is no template for AN surgery or radiation outcomes.  We all want some kind of assurance that whatever we choose will be effective - with minimal complications.  That was my criteria.  The reality is that this is not possible.  Every AN patient presents with a slightly different situation regarding the size and placement of their AN.  Then you have the added factors of their surgeons skill level - as well as plain old 'chance'.  I wish it were not so darn complicated and that we could offer simple, affirmative answers to these common, very relevant questions from the newly diagnosed.  I can only hope that the responses you receive here can help you understand the possibilities inherent in AN surgery (or radiation) and that this will help you make a rational, informed choice regarding how you choose to address your AN.

Jim

[amye]

Thanks, Jim.

Your wisdom is much appreciated.

Amy

[calimama]

I don't have balance issues, but didn't before either.  I was certainly worried about how the surgery would affect my mobility in the medium to longer-term. But was only an issue in the very short term...

The first week was tough (but then again, i spent it horizontal in the hospital. i only got up to walk, with a walker, a few times, and it was certainly tough, but that was only the first week!), and certainly felt vulnerable for a good month, but i would rate my balance at at least 95% pre-surgery now (and would have said the same at 3months post). The only time i really sense anything different is when i turn my head while walking fast, say to see if the bus is coming. I think i misstep a bit, but no biggie. I came home from the hospital with walker and ditched it the next day (luckily we have a small house, bungalow). But first month is probably a little tough on all... they do cut your head open after all (and the thought is MUCH scarier than the reality).

I think this one of those things that is different for everyone, but balance issues are not a given, even with a cut nerve. Hopefully the doctor can give you some indication of what to expect. You do want to be prepared for anything.

good luck,
Trish

[nteeman]

While I didn't realize I had balance issues pre-surgery my neurologist and neurosurgeon both did. It was mild but on long walks I would feel light-headed, when tested quick turns made me a little dizzy, walking a straight line and standing on one leg was challenging. Now, 3 months after surgery I feel my balance is much better-not perfect but better. I can walk a straight line, I can stand on one leg (with my eyes open only), and quick head turns have much less of an effect. If I had to make a number judgement I would say that prior to surgery my balance was 90% of normal, now 95%.

Of course everyone is different (YMMV) - I hope that helps you.

Neal

[kwalker]

good afternoon,
   i agree with everyone, you usually experience some degree of balance issues after surgery. Mine was due to the trauma of the nerves during surgery but also the loss of function of my left eye, when you can't see well your balance is off. for several months i had fairly extreme balance issues, could not walk up stairs with laudry baskey in hand. It's been about a year and half since surgery and balance has improved. While i'll never have perfect balance, i am learning my limitations, i feel blessed of my recovery so far.
so there really is no "perfect" answer, each case is different, usually with time or therapy, though, you can improve.

[Brendalu]

My balance was the pitts for nine years prior to my diagnosis.  My tumor was 3.5 cm.  I did almost two years of PT and now do Wii Fit balance exercises daily.  Still can't walk a straight line or stay on a side walk.  It will be four years in July since my translab.  I don't think any twp people have the same outcome.  I also don't think that working hard to restore it works for everyone.  It works for some of the people some of time.  I keep trying though and for me that is the important part!
Good luck!

Brenda

[heyct]

Great link Donnalynn.
I'm hoping for the best after my surgery since I currently have no balance issues. Keeping my fingers crossed!

Carolyn