Balance Issues

[Dfcman]

Hello all...good to see ya!

I am kinda curious about balance issues.  Now we all have balance issues, either Pre Op or Post Op. And or both.  Well I do wanna know about your balance ordeals.  If you had them before your surgery. And how long your balance was off b4 the surgery.  Did it get progressively worse?  I know mine did.  After awhile it was like I could barely walk.  And it got better as I was up for awhile moving too(pre-op)

I wanna know what it was like after surgery too.  How long it took to improve.  What improved your balance?  Was being up and active, did that help it?  Can you do things like you used to?  Can you walk on uneven surfaces?  I know I wanna know all this because of obvious mobility reasons, but what will work be like?  What will walking on a dock to my boat be like? 

I hope you can tell me different stories about it so I can have higher hopes about it.  Thanks.

Chris

[Jeanlea]

Hi Chris,

I had very little balance issues before surgery.  I think I slowly adapted as my tumor grew in size.  My surgery was 9-6-05.  I took a few days to get up and walking.  The more I walked the better I got.  By last November I was able to hike for 5 miles.  This past summer I was out hiking on a backpacking trail and wading on the rocks in Lake Superior.  I can walk an any type of surface with no problems.  I've just found that going downhill on a steep slope I slow down to make sure I keep my balance.  All in all, my balance has come back to close to normal.  I'm sure you will too.  It must feel good to be out of the hospital.  A year from now things will be much better for you.  Keep on walking.  You will do it.

Jean

[Boppie]

Good question...I'll try to be specific
I've enjoyed boating most of my adult life, but I wouldn't walk a moving dock without a handrail today.   My drunk walk was not too good at pre op tests.  At one year post op my drunk walk is pretty good.  Now I just do a small lurch to the side (two step) once in a while but never fall.  I get a whirl when I jerk around fast but don't loose my balance.  I don't look forward to ferris wheels anymore now than I did pre op.  I can jump on a mini tramp.  I can skip.  I walk on all types of surfaces.  I run not too well, but 65 years olds don't usually run anyway.  I still take flights on large and small airlines.  I am still an excellent driver and have had not problems with it post op.  I have a friend who is in her forties, had translab in Spring 2006.  She is back to water skiing!

I'd say that you will  improve your balance with practice post op because you are rid of the offending pressures on the nerves.

I have a 50 something AN friend who had to give up his ping pong games, too much rapid movement.  I think age and muscle make up has a lot to do with recovery of agility.  You are going to hear some remarkable and encouraging things from posters here.

Loss of balance is not a permanent issue.  The body compensates.  Walk as much as you can.  Move your head from side to side as you walk.  Challenge your vision/balance coordination. 

Best of Luck.

[windinthesails]

Hi there,
   The neurosurgeon that I am going to suggested ridding a bike, not a stationary one but like a moutain bike, to help with balance issues but reccommended someone go with you and helmet at first. I know I have been doing that and it has helped post-op.

[Dfcman]

thank you all for your words of inspiration.  I have been told that I am making a miraculous recovery.  My mother says I have been doing so good is because of my attitude and ambition.  Let me tell ya, you guys your words inspire me.  Thanks!  Onward and Upward.

[Jim Scott]

Dfcman:

In the weeks before my surgery, I could hardly walk without noticably lurching.  My balance was poor and my wife noticed this, which led me the doctor and the MRI scan that showed my large AN tumor.  Immediately post-op, I was a little shaky on my feet but could walk well enough to be discharged.  I had 3 VNA physical re-hab visits my first weeks at home.  I did great with the exercises because I was highly motivated and really wanted to get my balance back.  I did.  Not 100%, maybe, but now, 4 months post-op (and counting) my walk is normal (very rarely lurching) and I can handle uneven surfaces just fine.  I never had a problem walking in the dark, pre or post-op, so that was never an 'issue'.  I can walk - rapidly - both up and down stairs without holding on to a handrail (impossible before my surgery).   

Chris, I think that if you are in decent health (I was, despite my age: 63) and have a competent surgeon who removes the tumor off the affected nerves....with some work on your part, you should regain most of your balance and ability to walk normally without any serious limitations.   

I wish you the best recovery possible.


Jim

[Laura]

I have not yet had the surgery (I'm on watch/wait) but I have noticed that I'm getting a little clumsier. I've always been a little on the clumsy side but I can see an increase; I trip over my own feet a lot. Man, if I had a dollar for every time someone some one asked me if I had been drinking… oh well. CHEERS! 

[dowdog]

I am a watch and waiter AN-er who just got the results of my first 6 month MRI since initial diagnosis in April.  My AN has "grown" by 2 millimeters.  I don't want surgery and I don't want radiation either.  I want to be one of the people whose AN doesn't "grow" after diagnosis.  But now I see that at least for now it is growing.  However, it is still relatively small. 
My balance has gotten slightly worse, and I notice it especially at night.  I am not good on uneven surfaces like limestone stepping stones in my back yard.  I have noticed that I am really bad when trying to climb bleachers for night time football games under the "friday night lights". 
I have wondered, too, if this would get better either post op or post CK or GK.  No consensus opinion has emerged.  Could get better could be worse or could stay the same.  One of my drs said that if the balance nerve on my affected side was cut, my balance would actually be better because my entire balance system wouldn't be getting the "bad" info it is currently getting from the nerve that is squashed by the tumor.  Sounds reasonable, I guess. 
Would like to hear from people with CK,GK treatment on what their pre-treatment exp. was vs. post treatment exp.

Chuck

[Dfcman]

Chuck,

I'm sorry, I really don't understand watch and wait mode. (unless its a recurrence)  I think the tumor might cause some post op temporary damages, but isnt it better to get rid of it? What do doctors say about this?  I'd imagine this benign tumor is like any type of malignant cancer.  You got to get to it early.  I'd imagine if its growing its gonna cause more problems maybe more with balance, coordination, visual or hearing issues.  Plus it may cause a fluid backup in the brain, which causes all kinds of problems.  I know I hated having shunts(or drains) for Hydrocephalus.  Its a nasty thing and its one more surgery(s) you have to worry about.  I think 9/10 of them fail.  I know mine did and Chelsea's several times.   I dunno maybe you can explain it to me.  Mine was diagnosed being 5+ cm and the doctor said "lets get this god-awful thing out of there" and I'm glad its gone now.

Chris

[Derek]

Anyone who is eligible for 'wait and watch' must be crazy to unneccesarily opt for microsurgery or radiosurgery as both procedures carry an element of risk as to the eventual outcome. I have been 'wait and watch' for nearly 5 years which fortunately have been of high quality enabling me to maintain my passion for motorcycling and other active pursuits. I have annual MRI scans and acting on professional medical advice I have preferred to remain on the 'wait and watch' option and cannot see the need to put my present lifestyle at risk of being temporarily or permanently affected. As I see it every day without medical intervention is a bonus and as each year passes there is always the positive aspect that advances in the treatment of ANs are continually progressing and in nearing  my 63rd birthday I also live in hope that this 'little bugger' might decide to call it a day of it's own accord!

 In the interim, I have a positive outlook ensuring that I maintain a sensible diet, drink at least 2 litres of water each day and exercise daily including a brisk 5 mile walk....I find that this regime works for me and should the 'little bugger' eventually decide to flex it's muscles then hopefully GK will sort it out.

[Dfcman]

yes I guess that's true gentlemen.  I stand corrected.  At least I hope for your sake.  God, it must make you guys sick knowing that "little bugger" is in there.  I guess you have to do what's right for "you" of course.  Mine was prob 4cm before I noticed anything.  I went deaf and lost balance all within a year. It had no signs at all.  I just hope you guys are monitored closely and you dont have as many problems before it's too late to deal with them.  I can understand your point though, and maybe i'd do the same in your shoes.

Chris

[Laura]

Having an AN shows you what you are really capable of mentally. Each and every one of us has probably seen strengths in ourselves that we didn't know we had prior to our diagnosis. I believe it takes a strong willed person to be on watch and wait because you do have to wake up every day knowing you have this "thing" in your head and maybe it's growing... maybe it's not. I agree with Bruce and Derek completely! I was diagnosed in August when my daughter was only 10 months old. There was NO WAY I was going to let this "thing" in my head rob me of any time or precious memories with my daughter if I could help it. I know there may come a time when the tumor will need to have some sort of treatment and I know I will deal with it then…

Laura

[Kilroy1976]

Chris:

It's not a pleasant thought to know that the little bugger is still in there, but I'm sure that it's a decision that we've all weighed carefully. There are people who have decided to have surgery just because they couldn't stand to have an intruder in their brain. Those of us who chose radiosurgery knew that the AN was going to be sticking around for some time, and it probably doesn't make too many of us sick.

[nancyann]

Hi Chris - I had my AN removed almost 5 months now.  I'm going for balance therapy.  What they have you do is focus on a point (I have index cards with X in the middle).  turn head from side to side while focusing on the X held in front of you, approx. 1 foot away at eyes height.  Hold 2 cards with X slightly apart, turn head from 1 card to the other focusing on the X, do each approx. 25 times.  Then hold 1 card higher than the other in front of you, head moves from one card to the other, keeping eyes on X.    Then close eyes, move head side to side visualizing X.  Also, one foot is slightly ahead of the other.   It's a little more complicated but basically that's it.  Your're retraining your good vestibular side to compensate for the lost vestibular nerve.   I would highly suggest Balance therapy.    At first you feel more off balance, but it gets better.  Good luck, Nancy

[Jim Scott]

Excuse me, but I just wanted to chime in on the 'watch-and-wait' discussion. 

While my AN was so large that microsurgery - as quickly as possible - was the only realistic option, I would have been perfectly content to 'watch-and-wait' - had that been feasible.  Some of the post-op 'horror stories' I've seen related on this forum are definitely scary and would easily make me decide to avoid radiation and/or surgery, if at all possible.  That being the case, I can appreciate that while some AN-diagnosed patients opt for radiation or surgery, almost immediately, often out of pure necessity, as I did, others gratefully take the 'watch-and-wait' option, when its feasible to do so. 

I can easily empathize with those who want to 'get it out' as quickly as possible, even knowing the risks for possible post-op complications.  Those folks want the 'peace of mind' gained by knowing there is no longer a foreign substance (AN tumor) in their head possibly growing larger, week by week, month by month.  They are willing to undergo the hassles of surgery, hospitalization and possible post-op problems, just to be physically free of the tumor.  Even when you have a small-size AN diagnosis, that is an option I can understand - and respect.

However, if the tumor is so small that your physician recommends 'watching-and-waiting', I see no reason not to do so.  No one really wants brain surgery performed on them and with the risk of post-op complications looming in the background, I can easily understand why some folks go that route, when possible.  I probably would. 

Ultimately, it's your life and your personal decision.  If one opts for surgery (micro or radiation) and has post-op complications, they knew the risk going in.  However, if one decides to take an available, physician-approved 'watch-and-wait' option and that results in a larger tumor to eventually be removed, that person also presumably understood the risks beforehand and made an informed choice to wait.  Either way, it's a very personal choice and will depend on many factors, including tumor size, growth pattern (if any), their general health and even insurance concerns, for some folks.   I won't condemn anyone's personal choice here - I just wish I might have been fortunate enough to even have had[/u] a choice.  I didn't...yet things worked out rather well, after all.  I'm good with that.   


Jim[/color]