Please describe balance problems

[Nancy Drew]

Just wondering what people experience when they have balance problems/issues.  I am not sure if I am having balance issues or if I am just clumsy.  Sometimes when I turn my head I kind of feel a pull to the side.  I notice when I am in the shower and turn around I go to the side also.  Sometimes I can just be walking straight and tip to the side also.  Seems like it is more to the AN ear side.  I will often tip toe back to the middle when I start walking to the side (like I am being pulled).  I am not sure if I am explaining this well.  Would be nice to know what constitutes balance issues related to an AN.  Thanks for any info you might share.

Nancy

[Boppie]

I did all of the things you mentioned.  Also, I couldn't walk a path of garden stones without getting my arms in the act to keep myself on the stones.  I couldn't pretend I was walking a tight rope with my grandsons.  The balance problems were not constant just incidental.  I fell from a jeep car door when the car lurched just a little,   couldn't walk down a slight grade without feeling I was going to tumble forward.  I stopped dancing with my husband because I thought he was turning in circles too much,  stopped reading magazines in the car while my husband drove, slammed my shoulder into door jambs.  I hit my head on the car door jamb, hung onto the bar above the passender seat when the driver turned corners.  All the time I had no idea my balance was impaired. 

I defintely could not manage a drunk walk when I tried in the doctor's office.

I was always agile and rythmic, danced well, climbed high ladders.  But I attributed the changes to loss of muscle strength and aging.

In my dreams I am skipping to music in the first grade. 

[Debbi]

Hi Nancy-

Not sure how helpful I can be with this, but here goes anyway...

Turns out that I was having balance problems for probably 8 months or so before I knew I had the AN (Ethel, as we came to call her).  I noticed sometimes that I would stumble or feel off-balance if I moved too suddenly.  At the time, I chalked it up to being over 50 and scolded myself for not doing enough yoga!  When I got the AN diagnosis and started educating myself, I realized that all those little incidences were actually symptomactic of the tumor.  

In reading many other posts here, I think that many of us had balance problems for quite awhile before realizing what was causing them.  I expect you'll get some posts from some other forumites who have had more definitive balance issues.

What you are describing certainly sounds like it may be caused by your AN.  I'd definitely mention it to your doctor when you see him/her next.

Be well!

Debbi

[wendysig]

Nancy,
What you are describing is a balance problem.  I do not have vertigo either, but I do have balance problems and experience some the same issues you do.  I can't walk in a straight line anymore, I kind of weave left and right.  I do have some control over it, but I guess what happens is when I try to straighten my stride I drift off in the other direction.  Also, if I turn my head when I'm walking I tend to drift the opposite way.  Very annoying but not dibilitating.  Some people have more trouble in the dark but I have not noticed much if any difference.  My guess is that this is a visual thing.  You can't see as well in the dark so you feel more off balance.  When I find my balance problem really causing problems for me I either hold onto something stable like a doorway if I'm inside or a street pole if I'm outside.  Holding onto another person helps too.  Sorry you're experiencing this as I know it can be very disconcerting.  Unfortunately, it's part of the AN package.  Not everyone has it but it's something we have in common.   Hang in there.  Try my ideas and see if they help.  If not, I'm sure you will find your own way to cope.  Good luck.

Wendy

[Nancy Drew]

Thanks for the feedback.  I don't know if I'm being paranoid or not after finding out about the growth of my AN two weeks ago.  Just know that I think about every little thing these days and wonder if it's related to the AN.  As for the balance issue, last week I was walking down the sidewalk to my neighbor's house and as I turned slightly to look behind me, I fell to the ground scraping my knee.  I just laughed it off.  Earlier today I was in the backyard and when I was coming in I fell forward and hit my arm against the door.  I always have bruises on my legs from bumping into this and that.  Someone was noticing my bruises today since I was wearing shorts.  I bruise easily so I guess any little bump can cause a bruise for me.  When my doctor asks if I have balance problems, I always say no only because I think I'm just clumsy, and it's not worth mentioning.  I had some sort of balance test early on where they put water in your ear, and my balance was good they said.  I just think I'm a little crazy these days and over thinking things and perhaps looking for stuff that's not really there.  Even as I write this my AN ear feels stopped up, and I am having a high pitched noise coming and going.  These things have happened in the past, but I never really thought much about it.  Now it seems like things are exagerated, and I think it could be a psychological reaction related to the fact that I now know that the AN is growing.  I really thought this AN was never going to be an issue since it was found by accident.  Thankfully it is small, and I don't have to be in a hurry to make any decisions about what to do.  I'm just hanging in here and waiting for my doctor to get a second opinion from his doctor friends about possible treatment issues.

Nancy 

[lori67]

I had many of the above listed problems too.  I had a few of them for years before diagnosis and didn't realize the reason for them.  I always chalked it up to clumsiness too.  I was definitely worse at night, but even during the day, I'd lose my balance if I turned around too fast.  At night I would always hit my elbows on the door frame.  I think the biggest problem was when i tried to take a yoga class and nearly knocked the whole back row over like dominoes!

I thought it was just a normal part of getting older (although I'm still younger than Jan).  I was a gymnast up until my Senior year in high school and used to do quite well on the balance beam.  Now the balance beam would have to be about 5 feet wide in order for me to stay on it!

I wouldn't say you're being paranoid about it, but once you realize there may have been a reason for all these strange things happening, you start to look back and it starts to make a little sense. 

Lori

[Nancy Drew]

Lori,

I love your sense of humor.  I needed a smile today!!!

Nancy

[Yvette]

You could be describing me exactly! The shower, turn to look and feeling "pulled", veering to one side while walking...all just like me too; thought I was just gettin' old. Bumping into door frames too. It's all a part of being in this club Nancy Drew. Hang in there, and watch out when making those lane changes while driving!

Blessings, Yvette

[Nancy Drew]

Yvette,

Thanks goodness I don't have problems changing lanes--or at least yet!  What validation you just gave me.  Isn't it weird how much we want to blame things on getting older.  Maybe we are really like cheese or wine.  We get better as we get older!  However, I just looked at the cheese in the fridge, and it is moldy and looks gross.  I'll be throwing it out, but I won't be throwing this website away.  You guys are the best.  Thanks.  Nancy

[Boppie]

The exercises we do post treatment are deisgned to challenge the vestibular system.   Walking and looking at an imaginary crowd on the sidelines is one of the best exercises to do.  Walking in a smooth gait while rotating the head from side to side while keeping eyes spotted to the exact front is excellent.  When I read about these exercises I learned to do them well pre op in the 10 weeks of waiting.  I had hoped to build up my balance.  After 2½ years of post op exercising I've regained some of it.  Stepping to the side and back gets me off balance every time.

I laugh when I recalll the two year old grandsons wagging their heads back and forth until they were dizzy, laughing all the while.  And they twirled round and round until they fell down on their bottoms laughing.  What wonderful balance they have! 

[Nancy Drew]

Boppie,

Sounds like you have a really good grip on the situation.  I think there is a lot to be learned from you.  I will try those balance exercises that you mentioned.  I have a physcial therapist friend who might be able to give me some tips also.  There is always room in our brains to learn.  Thanks.

Nancy

[sgerrard]

I had some sort of balance test early on where they put water in your ear, and my balance was good they said.

I had that test, and also passed. The vestibular lab people were really good to talk to, they know a lot about the balance nerves. Like that there are really two of them, the superior and inferior branches. The water in the ear test is for the superior branch, which I think is considered the main one, and will make you dizzy or get vertigo if it goes out.

The other inferior branch they can test by playing a sound in your ear (a loud tick), and monitoring a reflex in your neck muscle. That's the one where I showed weakness on one side, and it is the branch where many ANs start. The lab person said the inferior branch has to do with rotation balance, which is why we run into door jambs, or get wobbly in the shower, or have trouble turning and stepping sideways at the same time. I notice it every time I take out the trash, when I back out the door and turn to go down the steps. Can't seem to get out of taking out the trash, though. 

Steve

[Jim Scott]

Interesting thread.  Thought I would stop by to place a comment.

Unbeknownst to me, by the time I grudgingly admitted my wife was right and that something besides advancing age was affecting my balance (I didn't have much) my AN was relatively large.  The only vestibular test I received was when the examining neurosurgeon asked me to walk a straight line 'heel-and-toe'.  I looked like a bad imitation of Charlie Chaplin (look him up, youngsters) and no other tests were deemed necessary.  The neurosurgeon scheduled my surgery for a little over a week later.  Since my successful surgery and radiation, I've seen the same neurosurgeon a handful of times and aside from the usual brief neurological tests ("follow my finger") the 'heel-and-toe' walk has been the only test I've had.  Fortunately, I can now pass that test.  I know I'm fortunate and I'm certainly not complaining but, in a strange way, I almost feel left out of all the vestibular testing some other ANers have undergone.  That's O.K.    The fact that vestibular testing and re-training is widely available and effective is good news for all AN patients.  That I didn't seem to require it is probably because my symptoms were pronounced and the cause (the AN) was obvious.  Afterward, my surgery/radiation/recovery was pretty thorough, basically negating a need for vestibular therapy.  That's great but I'm still pleased that the testing and therapy is available for those who need it. 

Carry on. 

Jim

[Nancy Drew]

Wow Jim!  Just took a look at your signature, and you had a wopper of an AN.  Congrats on getting through your ordeal.  Amazing.  Steve, with the water part of the test, I got dizzy, and I threw up.  I did fine with the clicking noise.  I had this balance test when I was first diagnosed.  When did you have yours?  I wonder if they will do the test again since I have had growth.  I told the doctor at my last visit that I wasn't having any balance problems.  In fact, thinking back on it now I don't think I gave accurate answers on a lot of the questions they asked mainly because they didn't seem to be a big deal in my mind.  It is confusing when they come at you with all of those questions, and I think I was trying to downplay a lot hoping that I wasn't just overreacting because I can be rather dramatic at times.  I guess the clincher is growth and hearing loss which is something that can be measured right on the spot.  In the meantime, my husband will continue to take out the trash!!!  He's got to be good for something--just kidding.  He is the best.  Thanks again all for your wonderfuly insights.  Nancy 

[sgerrard]

Jim, I'm sorry you missed out on the vestibular lab, they are nice people - or they were at the one I went to, anyway. I suspect that with a 4.5 cm AN pressing on the brainstem, the status of your vestibular nerve was not high on the priority list. It is probably more common with smaller tumors, where the additional information can sometimes be useful in making a treatment choice.

Nancy, I am a little confused, I thought you said that when you had the water test, they said your balance was good, but then you said it made you dizzy and you threw up. That doesn't sound so great to me.    Anyway, I had my testing between diagnosis and treatment, maybe a month after the MRI. It was actually useful to know the result before I decided on treatment, and my ENT said the results meant there was no problem with doing radiation. I had never reported any balance issues, and the tests indicated only a minor balance nerve issue (the step and turn issue mentioned by others).

Steve