ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: lholl36233 on August 06, 2009, 05:42:26 pm
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The doctor said the good side has to take over for the bad side after surgery. Has this been everyone's experience?
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My tumor slowly crushed and killed my balance nerve. Therefore the opposite side had lots of time to compensate. Mind you I did notice slight balance problems pre op but only noticable by me. This happens when the tumor crushes the balance nerve. I never knew I had the crushed nerve til my ENT did an ENG
Joann
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Thank you Joann. That is very helpful. I don't have any balance issues right now but the doctor seems to think the surgery will automatically kill the balance nerve.
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I had no balance issues prior to surgery.
It was real bad at first but it gets better every day.
Read the string on Wonky Head.
That tries to describe it pretty good.
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Yep - I hade no balance issues prior to surgery, either. And it was bad at first and it does get better every day. LOTS and LOTS of walking. That's what helped me the most.
Cathy
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I only had a fear of heights before surgery, but no real balance issues. I just started biking around the time I found out about my AN, so my balance was really good pre-surgery. After surgery, I used a walker for 2 or 3 days during the hospital stay, and was sent home on day 8 with a cane. I used it for probably 4ish days, and then could stumble around on my own. I definitely went into surgery over-confident about the balance issue. I figured I'm 25, and I still must have a teenager 'I'm invincible' idea in my head ;) Not so. I'm about 6 weeks post-surgery, and can walk straight without too much effort most of the time. For reasons I don't know, the past 3 days have been worse, balance wise. I really had to focus to walk straight, and I tired quickly, but today I am better and feel I have more strength/less tired. I am going to physical therapy twice a week, and it has been a huge help. The different balance exercises have really helped my brain/balance systems to adjust. - Darin
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The doctor said the good side has to take over for the bad side after surgery. Has this been everyone's experience?
Laura ~
Your doctor is correct. However, much depends on to what extent the balance nerve has been compromised - and for how long. Those AN patients who have had their balance nerve severely compromised for some time will usually regain close to normal balance function fairly quickly because the brain has already compensated for the loss of input from the AN-affected ear. Those who've suffered only minimal nerve damage prior to surgery may find that it takes some time for their brain to adjust to the now-unilateral sensory input the surgery necessitates.
I had fairly severe damage to my 8th cranial nerve (due to a large AN) prior to surgery, with attendant balance problems and found that, following the surgery, I only needed some simple exercises (mostly, walking) to regain most of my balance ability. I never regained 100% but closer to 80-85% (my estimate). Once again, the axiom "every AN patient is unique and will have a slightly different outcome" remains valid.
Jim
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Hi Laura
I had just a little shakiness the first couple of days despite my left vestibular nerve still being intact prior to surgery which they of course sniped during surgery. I walked ALOT during my initail recovery and was back to a regular yoga practice at about 4 months post op.
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lholl:
My right vestibular nerve was removed during surgery. I was sent home from the hospital with a walker, which I stopped using 2 or 3 days after going home. I used a cane until about week 6. I went to physical therapy, which helped alot. I still have some balance issues 14 months post-op, but I think the remaining vestibular nerve doesn't do such a bad job.
Syl
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Laura-As you can see by the responses, everyone is different. My balance nerve was slowly killed off on the left side without me even noticing. Once I was told I had an AN, I could notice *slight* balance issues. After surgery-balance wasn't one of my issues, even on the first day.
You just can't guess, although I would recommend doing what Darren did and work on strengthening your balance prior to surgery. Can't hurt! I'm sure that played somewhat of a role in my balance 'story' b/c I was pretty fit prior to surgery and did lots of balance/core work.
Adrienne
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Hi Laura,
I did not have any balance issues before surgery (at least any that I could tell). My doctors told me that is was better to sever the balance nerve completely than to damage it during the surgery. They said that the balance nerve on the other side would compensate for the other one. The more you walk, the better it is for you and your brain retrains itself. My Carin terrier weighed 20 lbs before my surgery. After surgery I would walk her twice a day and within 6 weeks she lost 4 lbs. I guess all that walking was good for both of us. Ann
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Laura,
Before my surgery my neurosurgeon pointed out minor balance issues that I didn't even realize I had. He felt that my vestibular nerve (balance) was already compromised and I was compensating for it. After surgery I did not have any balance issues. I was up and walking the very next day. I did have very mild light headed feeling and even now this appears when I am tired. I also find that if I turn quickly it takes me a moment to orientate myself. I also find that while walking in an open unrestricked area I tend to drift to one side or the other. I tend to drift to the side walking up or down stairs, as well. Being aware of these limitations help keep me going without any problem.
Neal
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Sorry for the late reply. I had serious balance issues post radio-surgery in 2004. Found 2 years ago that extreme exercise that REALLY challenges your balance is a big help. Surgery to remove the regrowing tumor June 17th. Now my balance is so close to what I remember normal is that I can't tell the difference. Getting rid of the malfunctioning nerve has made a big improvement now that the brain has no false signals to contend with.
Best advice regardless of what your status is....work it hard.
http://anausa.org/forum/index.php?topic=8379.0 (http://anausa.org/forum/index.php?topic=8379.0)
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I feel my balance is worse. Sometimes when I get up I feel like I am going to pass out I am so light headed and I can't walk a straight line at all.
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My balance issues were minor pre surgery, things I thouhgt I was just clumsy, but looking back, realize it was my balance going bad. After the surgery, It was HORRIBLE. lots of vestibular rehab exercises and lots of walking got me to about 70% by the 2.5 yr mark, then it started going back the wrong way. I'm now at I'd say 30-40% of normal, going in for round 2 to get the regrowth out. Like Stoneax, my brain is getting false signals from the remaining piece of the nerve that was left attached to the hearing nerve. (Guess they have to leave a smidgen of it on to salvage haring w/mid fosa). I pray that getting the rest of it gone w/ Translab will finally allow my brain to compensate and get back some of my balance.
I have observed with many posts and looking over this one. It seems people with larger tumors and that had Translab seemed to have more balance problems before the surgery and fewer after than with middle fosa or retro. Just my observation, seems saving the hearing means dealing with worse balance problems.
Patti UT
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Same for me as for other replies here. I had no balance issues prior to surgery. After surgery I had pronounced balance issues. It was explained to me that during the surgery the balance nerve had to be cut and was not restored. Over time, my "good" side, balance wise, has compensated, and I have no balance issues at all unless I am really tired or turn my head from side to side too quickly (as in watching for oncoming traffic on the left and the right, while driving). I was told post surgery that lots of walking would help, which it did.
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I have no hearing in right ear and the balance drives me crazy. Maybe I need to try the rehab.
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Like a lot of people here I didn't have massive problems beforehand that I noticed - I did have a few little ones that were pointed out to me by the doctor though. Post surgery was a very wonky headed time - my balance nerve was cut in translab surgery and I really noticed the difference. It was amazing how fast the body started to compensate though. Now, 6 months on, I'm about 90% I'd say. Nobody else can notice I have balance problems but when I'm tired I can. I just have to concentrate a bit more to stay centered I guess. I'd highly recommend physio (or phyiscal therapy I think it's called in the states?) post op, they give you lots of exercises that really help especially with the high functioning balance stuff which we take for granted. Also as many posters have noted be active before and after the op (obviously not straight away... relish the excuse to be a bit lazy for a while!) - but yeah, start taking good walks as soon as you can and often, that will absolutely help. I did a lot of stand up paddleboarding (like Stoneaxe), walking, and am now back doing yoga and can balance on one leg now so obviously all the hard work has paid off! Completed a 20 mile walk for charity on Friday night too - although I did it with hiking poles just in case as I got tired I started weaving all over the place! I think they helped a lot!
Hopefully, with some rehab/physio and a lot of practice and activity you'll be able to get back to near 'normal'.
Cheers
JB
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I had significant balance and "wonky head" issues post surgery, but the improvement was very rapid for the first few weeks. Sometimes I would notice improvement by the day. After the first 2-3 months, the improvement slowed to the point that I would only notice progress every couple of months. I started feeling more normal at the 10 month point. I am 10 1/2 months now and still feel some waviness in my head when in motion, especially when very tired.
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Laura,
My balance was bad for ten years prior to my surgery....my family thought of was always a little off! I couldn't walk beside anyone because I would walk into them. After months of PT, I have not improved at all, and it has been fours years plus since my surgery. I would say, no two people are alike in this issue either. Good luck!
Brenda