ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: kiwi on January 02, 2010, 02:45:55 pm
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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
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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
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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
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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
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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! :D
Lyn
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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
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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
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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.
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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
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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
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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
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It's possible, instead of retyping my experience..
http://anausa.org/forum/index.php?topic=8379.0 (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.
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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
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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
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Wow, KIWI. This is an awesome thread! Thanks for asking the question.
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Hello Jacqui,
It appears you and I may be sharing an anniversary together. My surgery is also scheduled for 2/2/10 with Dr. Brackmann and HEI in Los Angeles. Would love to stay in touch with you to see how you're doing pre and post op. I also have some balance issues, but not as prevelant as what you are going through. I've also heard about the balance improving after surgery, once the "mixed messages" are eliminated. But it does also appear that it may take some time. And I understand the vestibular therapy has been very beneficial for a lot of people on the forum. Best wishes to you for a successful outcome with your surgery. I'll be right there with you!
Michelle
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Hi Michelle
I hope your surgery goes well and you have a speedy recovery. What sort of surgery are you having? I have received some vestibular exercises from Jan (thankyou so much Jan) and being an avid sports nut I will be pumping them out in not time. I am determined to be up and about as soon as I can. I dont want to waste anymore of my life on this intruder!
Jacqui
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Being a body builder and horse rider I feel very confident you are going to regain your balance. You have strong muscles and I believe that helps greatly in recovery. Hang in there, you are going to feel better in the future!!
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Hi Jacqui,
I'm having translab as well, same date. We will both be going through similar situations, so please do keep in touch and let me know how you are doing. I know your surgery will go well, and being as disciplined as you are with your sports, I'm sure you will recover as quickly as possible. Give yourself a break though. You sound like you have high expectations for yourself, so we probably have similar personalities. I have a tendency to get bummed out if things aren't moving forward as quickly as I think they should be. So, feel free to vent at any time if you're feeling frustrated.
Would you mind forwarding those vestibular exercises from Jan to me as well? I'd sure appreciate that.
Michelle
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Would you mind forwarding those vestibular exercises from Jan to me as well? I'd sure appreciate that.
Michelle
Michelle -
I can send them to you if you want. Just PM me your email address.
Jan
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Hi Jacqui,
How's life in the Naki??
Sorry I have been off line for a couple of weeks and missed your initial post, welcome to the AN family.
Do take Jan up on her offer of the Vestibular exercises, they have helped me while I await a date for surgery up in Auckland.
Don't let this get you down, it's just a speed bump on the road of life.
Hang in there, and if you want to talk PM me and I will give an email and phone number
Rgds
Don
The other Kiwi in the Forum
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Jaqui,
I was in your same situation one year ago, and yes, the balance does get much better. I was having severe balance problems leading up to my surgery date including even falling into and through a plate glass bookcase while taking off my pants one night!!! I was fine, but the bookcase didn't fare so well! You should see an immediate improvement right after the operation. The balance will not be perfect, just better. As time goes on with your post op recovery, you should see gradual improvement over the following months. I did notice big improvements at 6-8 weeks and even more improvement 8 months later. So patience will be your virtue in dealing with the extended recovery. The only thing that will not come back is balance in the dark or with your eyes closed. Since you will only have one good nerve left, the brain relies more on your vision and that one nerve to reprogram your balance. Otherwise, you will be glad to see the improvement in the coming months. Your sporty background will help ALOT in your recovery, and as someone said, your brain is already compensating before the operation. So you may find a more immediate recovery than others.
Good luck and keep us updated.
Regards,
Steve
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Hey Jacqui/Kiwi,
I'm out of surgery and wanted to wish you the best of luck on you on yours! I know you will do great. I can't tell you what a relief it was just to get it done with. The worrying and anticpation leading up to it was unbearable, and now that it is done, I can finally relax and focus on healing. A couple of things that I found really really helpful. Make sure someone stays with you in your hospital room at least the following night out of ICU, or more. My mom stayed the first night, and my husband the second, and they were both immensely helpful. The nurses were great, but it was really nice just to have someone there at your bedside. If you have those resources, take advantage. The other advise, get out of bed as soon as you're able. I felt a million times better once I was able to get up and sit down, and/or walk around a bit. Anyway, let me know if you need anything or if you have any last minute questions. Best wishes for a speedy recovery.
Michelle
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Hi Kiwi: I never had balance problems pre-op, but today, 3 1/2 years post op, I took a nose dive as I entered the lobby of my workplace - all I could say after I was helped up was " What an entrance !, I don't have a balance nerve on my right side." & now the song that keeps running through my head is "I get knocked down, but I get up again.... ! !"
Hang in there Kiwi.
Always good thoughts, Nancy
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Kiwi and Joanne
I hope your surgery the both of you had turned out okay. My prayers are with you.
The balance issues before surgery is different after. It does eventually get better because your body compensates for itself. Depending on how much of the balance nerve was damaged and the movement of the brain during surgery. I had a large 5cm tumor removed 10 years ago and for 2 months after surgery I needed help. I had to learn to walk because I could not just lift my feet to move the brain was not communicating to my legs.
My sister took me in the pool to walk back and forth and to do exercise it really helps.
I could not get hurt on a hard surface because you are in water. Do the balance exercises they give you and it will help. I still experience balance issues when I have swelling and a headache but it goes away in a day or so.
Good luck
Cathy :)
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Yes hang in there Kiwi.
Nancy, you made me laugh. I think that is going to be my theme song from now on. A few weeks ago I went for some vestibular rehab, took the bus home, was cutting through the mall parking lot to pop in a grocery store and a fell in front of the McDonald's. This lovely older Italian man came to rescue. My purse went one way, my sun glasses the other. I also ripped both knees out of my pants. He helped pick me up, gathered my purse and sun glasses and insisted on buying me coffee in the McDonald's. Here it turned out he knew my father-in-law from years ago when my father-in-law delivered bread for Pane Del Sole. What a small world!
I told my husband and sons what happened. My husband laughed and my sons were mortified. What can I say, I lost all dignity when I gave birth almost 23 years ago to my 1st son, so what's a little tumble in front of a McDonald's close to home?
Anne Marie
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Kiwi:
I'm almost 2 years post-op & I hadn't noticed much improvement with my balance for a long time. In the past few weeks, that has changed. I find it easier to look around as I enjoy my morning walks. I also find that my neck's flexibility has improved--I can turn my head farther.
Syl
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Good luck on your up coming surgery, when will it be?
I am having some balance issues but it appears not as bad as yours. I tend to stagger to the right (AN is on the right), if I move too fast, up or down, I get dizzy easily. Also being a passenger in a car that makes a lot of stop and goes, I tend to get motion sickness. Hang in there and best wishes.
LisaP ;D
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I am so glad to find this post because I have horrible vertigo. I can't wait for surgery. I am staying home doing nothing pretty much. I have 2 weeks until surgery. Sometimes I worry that I'm extra sick and there's something bigger wrong with me so I'm happy to see someone else who has such symptoms before surgery. I hope everything has worked out if you've had surgery.
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Hi Aileen
I had surgery 4 weeks ago and I now walk my dogs over the farm for an hour everday. I am so glad my balance improved greatly after surgery, although its not 100% its a lot better than before surgery. I hope you experience the same results as me.
Jacqui