Will I ever walk normal again??

[kiwi]

Hi

I am really having a hard time trying to keep my balance.  I am having translab surgery and am wondering if anyone else had such bad balance problems before surgery?  Does it come right?  I am at the stage that I can hardly walk and when I have a small outing I need to sleep for the rest of the day.  I cannot cross the road without my mother holding my hand.  Just looking for traffic and moving my head side to side makes me fall over, my mum is scared I am going to fall into the traffic and get run over.

I know balance is an issue for most people on here and I know I will have to work at it after surgery...will the majority of my balance come back after surgery?

Jacqui

[Syl]

Kiwi:

I still have trouble looking around and staying balanced 1.5 yrs post-op. It's challenging looking both ways when I drive and when I walk. I've never taken a fall because of my balance issues, but I do have to be careful.

My Dr. had mentioned to me pre-op that once the damaged balance nerve is removed--mine was--the brain stops getting mixed messages and balance improves. It took me about 6 weeks before I felt confident enough to attempt driving. I also used a cane for about 6 weeks. I found the cane helped me a great deal because it allawed me to walk faster as I turned my head.

I do believe my balance has improved, but I have to continuously work at it. I walk on a regular basis around my hood, and find that when I slack off my balance and dizziness get worse.

Syl

[Jim Scott]

Jacqui ~

I'm sorry to learn you're having these severe balance problems. There are no guarantees but usually, balance issues improve following surgery.  The brain stops receiving faulty 'messages' from the AN-damaged nerve and eventually 'learns' to depend on the remaining functioning nerve to help administer balance cues.  As you noted, sometimes it takes professional vestibular rehab therapy to regain normal balance - but it can be accomplished over time, often with home exercises.  I think you'll be better after your surgery.

Jim

[CHD63]

Jacqui .....

Yes, your balance will eventually come back after surgery.  Your brain is probably already beginning to compensate by shifting the signals over to the other side.  However, right now your brain is also receiving poor and inconsistent signals from your AN side and it does not know what to do with them.  After surgery there will be no vestibular signals from that side so the brain actually will rather quickly learn to function with just the good signals from your non-AN side.

You may find it advantageous to look in to vestibular therapy (by a trained vestibular therapist) to be in place following surgery.  I had vestibular therapy for months (my case is unusual because of both sides being involved) and it was extremely helpful.

Be very careful between now and your surgery because your vestibular system is changing with the growth of your tumor, as well as brain adjustment.

Best thoughts.  Clarice

[lawmama]

Dizziness and vertigo were my presenting symptoms.  I don't think I was quite as bad as you are describing, but I was constantly mis-stepping and bumping into things.   I couldn't stand with my eyes closed or I would lose my balance.  I also couldn't walk a straight line more than a step or two.

I'm almost 3 weeks post-op and in some ways things are better, and in some they aren't quite there yet.  The spinning and vertigo feelings are gone.  That's a blessing!  Before, if I stared at a still point on the wall, everything else in the room would appear to move.  That's stopped.  Also, when I would lean my head forward or back (not even fast, just slowly), I would get a very overwhelming spinning feeling, so bad that I would almost fall if I was standing.  That's stopped also.

My balance isn't quite back yet, though.  I'm working on my balance exercises, and I can already tell a huge improvement.  But to be honest, I still have a way to go.  I still wouldn't be able to walk a straight line, but I can stand with my eyes closed.  I do have to pay attention when I am walking, it's not completely natural yet.  So, I think that my balance is great when I am still, but the one side hasn't quite fully compensated when I am moving. 

I hope this all made sense.  I don't know all of the technical terms for everything, so I just tried to describe it.  My doctor said the same thing Clarice did about the damaged vestibular nerve sending bad signals.  I think that was the case with me and that is why my standing still balance is already better than it was pre-op.  One nerve is better than two if one of them is just sending junk along the wire!   

Lyn

[leapyrtwins]

Jacqui -

when the balance nerve is damaged - like it will be from surgery - the body eventually compensates.  So, while your balance will be an issue post op, it will improve over time and should get back to normal eventually.  It may take a few months though and you might ultimately still have issues on occasion.

My AN surgery was over 2 years ago, and I still have balance issues when I'm stressed or fatigued.  It's not a huge problem for me, but I do acquire the famous "drunken-sailor" walk we talk about here on the Forum.

Jan

[kiwi]

Thankyou all for your replies......I conclude that everything regarding an AN is a time issue.  I guess I will be learning patience (something I dont't have)

I think I am going to go crazy in recovery, it has already made everything so frustrating.  I find my life in limbo at the moment.  I am very sporty and only 38.  I am a horse rider and a competitive body builder who has no balance!!  I guess I will have to put my 6-inch heels back in the wardrobe.  Lifting weights will be out of the question too.  ARRRRRGGGGHHHHH I just want to scream.

I commend you all on your patience and your ability to just get on with it, I can only hope I too can learn this soon.

Jacqui

[Rc Moser]

normal? like years before the tumor? I doubt it? You will improve and after a few years think it's normal, normal will become a new level of balance especially on uneven ground,  when you bend down low, or in the dark.  Hearing will also be a new normal. Most of us that had large tumor's are just thankful for our level of hearing and balance which IMO will be no where near what normal use to be. Then for some of us normal headache's are the norm.

[leapyrtwins]

normal? like years before the tumor? I doubt it?

Not necessarily true.  Each person's experience is different and 98% of the time, my balance is normal - and I don't think I'm completely unique in this aspect.

Jan

[moe]

Jacqui,
I had translab for a tumor that had been in there for way too long. I had little balance or dizziness issues post op like I feared, because the other side had already compensated. I was so surprised! I have never fallen or had bad balance issues post op, just little bit of imbalance.

It will be a matter of getting used to the "new you". You may have to do yoga/balance games/WII fit games/more walking, but things will be OK! Have confidence in yourself. You are already very athletic.

I know it is hard to be patient, but as you will learn that is part of the "game."

I can see you doing the horse riding and body building after you get the booger out. At least 6 weeks of gentle activity, but you WILL get better.
Hang in there, keep holding on to your mama.
Maureen

[Joanne7151]

Hi Jacqui,

I too am scheduled for AN surgery (translab) on January 20. I have very bad balance issues now. I hold onto walls & furniture (and my husband when we go out).
I had Gamma Knife surgery on August 6 of this year, I was okay for about a month after, then balance issues started creeping up on me. Hearing got much worse, headaches, fatigue and focusing also got worse. In Oct. the MRI showed that the tumor was either swollen or growing. Balance got much worse. I kept complaining to my Dr., he said it was swelling. Finally on Dec. 1 I had another MRI, it showed the tumor had grown quite a bit since August and Oct. I went to a different Dr. who said I needed to have it removed. As I said before, I am scheduled for January 20 at NYU medical center. I've been out of work since Oct. 10. Can't walk right or drive. I hope this surgery will solve, at least improve my symptoms.
I wish you well.

Joanne

[stoneaxe]

It's possible, instead of retyping my experience..
http://anausa.org/forum/index.php?topic=8379.0

In addition to that. I had translab June 17th to remove my regrowing tumor. I'm one of the lucky ones. Very minor balance problems. No more concerns for driving, no vertigo. My balance seems to be more steady state. It's not as good as it was pre-AN but close enough that I rarely notice it.

[Sonja]

I had balance issues prior to Translab surgery. I had surgery February 2009 and as of today my balance is back to normal (pre-tumor). I can now stand on one leg (each leg) without holding on to anything.  I do believe my brain had already started compensating. Having the balance nerve removed did stop sending my brain mixed signals.  After surgery I did balance exercises (given to ne via my surgeon) at home daily. Your balance can definately return to normal. 

I wish you the best.

Sonja

[leapyrtwins]

After surgery I did balance exercises (given to ne via my surgeon) at home daily.

Jacqui -

my neurotologist gave me vestibular exercises to do twice daily both before and after my AN surgery and they helped immensely.

I have them in a Word document.  If you would like a copy of them, please PM me your email address and I'll send them to you.

Most docs also offer their AN patients physical therapy post op if they need help with their balance.  My doc offered to refer me to a PT, but I decided to just continue working at home with the exercises he'd given me.

Jan

[CF]

Wow, KIWI. This is an awesome thread! Thanks for asking the question.