balance issue

[goinbatty]

Up until today, I've been able to hide/mask my mild balance issues.  But today after church, I was stepping from my row onto the steps which are at an angle (kind of hard to explain but up in the balcony), when I suddenly lost it and gently sat down on the step.  My head is feeling really full today.  Again hard to explain but just plain tired I guess.  I went to a wedding last night and at the reception the music was pretty loud.  Forgot my ear plugs so I'm not sure if that has something to do with the head issue today.  I don't drink so that wouldn't be an issue.  For those that have balance problems, is this typical? 
Still waiting to hear back from Georgetown to finalize scheduling of CK.  I contacted them last week so hope to hear this week. 

[Brendalu]

Hi,

I am twenty-eight months out from translab and I still have balance issues.  (I had them prior to my surgery too)  I do find that if I am in crowded areas or have been subjected to loud music or any kind of loud noise, the stress it causes seems to make my balance issues worse.  Sitting, instead of falling is a good thing.  For most it does get better.  Good luck.
Brenda

[sgerrard]

From before treatment, I have noticed a small issue when making certain tricky moves, like your stepping out from the flat floor of the row onto a set of steps. It happens to me going through the backdoor, if I am holding something and holding the door with my back and turn while stepping onto the steps - a sudden, and only momentary, loss of balance.

I wouldn't be too worried about it, but do be aware that radiation treatment itself does not usually produce any improvement in balance nerve function - it tends to leave it the way it is.

Hope all goes well. Steve

[tony]

Yes - there ia direct relationship between fatigue
and a sudden "tail-spin" - if the ground wasnt level
that complicated things further.
You can push things to the envelope
- but the last 60mins of a long day
will be both clumbsy and full of collisions
Best not to operate the chainsaw
on days like this ?
Best Regards
Tony

[satman]

sounds normal and quite familiar,not to scare you but my DR. said my balance issue was from a
swollen brain stem,myA N was pretty big and was pushing on the brain stem also.
but it does sound normal,to me anyway.

[goinbatty]

Thanks to all for responding.  At least now I know I'm not nuts...as far as balance goes anyway.  That is the hardest thing to explain to others who haven't been through this.  It's not like I get dizzy but rather a brief bit of coordination difficulty.  I hope it doesn't get any worse but from what I've read about radiation, it probably will when the tumor swells.  I'll just be more careful from now on.  Thanks again. 

[Captain Deb]

For me, it's about overstimulation. When there are alot of factors--noise, visual, and just thinking about what I'm doing and who I'm with (mental listing) going on, I have vertigo jolts that just last a few seconds, and can put me on my can, too! I've learned to focus and "tune out" certain things when I have to, especially when I'm doing things like grocery shopping (don't spend too much time comparison shopping or it'll really spin me,) let every one else leave a crowded theater first, etc. We learn little tricks that help us cope.

Capt Deb

[Joef]

I actually seem to be good with the balance now ... on normal conditions ... when tested .. I fail every time...

It could be a cold coming on .. or just doing 2 things at once throw me off ... the other day I was getting on the train shuttle ... I stopped to pay the 1$ .. I had to switch hands on the computer bag, dig for money in my pocket, all while still going up the steps of the bus... I lost my concentration .. I almost when down for the count .. I reached on for the railing at the last minute and caught myself...

I should of come to a stop at the top of the steps --- then dig for money... with only 1 balance ear... we just can not multi task as well ... and I dont think that will ever get better.. we just deal with it better....

Chainsaw!!! ..LOL .. I actually knew I was to much of a klutz years ago .. a friend came over to help chainsaw some wood -- and suggested a get a chainsaw... I just laughed and said I'd like to keep my limbs for a while  I'l let you do it 

[Detlef]

I'm at the 1-month post-treatment mark at Georgetown (CK).  I'm glad to report I've had no additional symptoms since that time.  I've had only very mild balance issues over the past few years (practically imperceptable).   A bit over a year ago, a physical therapist asked me if I had a stroke (due to the way I was walking).  She's good--I didn't know I had an AN until 9 months later.  I didn't know what to think when she asked me, other than I was poorly rested (drank the night before) and the walking trail had a constant slant to it.  Stroke !?!?!? -- that was weird... made me feel older...

I always carry ear plugs with me.  For instance, those salvation army folks aggressively ringing their bells at store fronts make me reach for the plugs.  I use them for any kind of noise (especially loud concerts, construction sites, and power tools).  I get a sense after removing them how much hearing I have left to preserve.  I wear a plug in my AN-ear while playing music live--I can hear myself singing through that ear, while my good ear is used to hear everyone else.  We don't play loud.  Anyway, thumbs up to ear plugs!

Good luck & I hope you hear from the Georgetown CK folks soon.  Maybe it's time for you to call them (I called them at the 3-week mark and was able to schedule treatment).

[lori67]

Goinbatty - if you happened to be at a Catholic church during your balance incident - chances are no one noticed.  We Catholics do get quite a workout at church anyway - what with all the sitting/standing/kneeling...

I do find my balance gets worse if I don't sleep well the night before or if i have a cold coming on, or sometimes if I'm just trying to do too much at one time - walk, chew gum, talk, look for car keys and sunglasses, chase small children...  Multitasking is a bad idea for me right now.  Not as bad as using a chainsaw - but i think that would have been a bad idea before too!!

[Soundy]

my ex and I had a tree trimming service and used to work out of a 70 foot boom truck... the thought of
getting in a bucket gives me shivers now... as for chainsaws ... I gave them up when we parted ways
and got a more feminine scroll saw...  ... in all honesty I have a wide range of woodworking tools that
have sat idle since surgery because I like my fingers attached to hands... some day I might get back to
using them but for now to risky... I did buy a Dremal tool with alot of attachments to play with
while waiting for issues to subside to a point I can use a ban saw or table saw without fear...

on a more serious note... if I am doing more than one thing at a time and one of them involves
movement I am going to start spinning and possibly go down...walking and lifting arm to look at watch is a
big no no and I keep doing it cause I am hard headed and a slow learner...

I also do a funny thing where I can be standing still ... not even thinking about walking and a dizzy wave will
come over me and I will rock up on my tip toes then back down on flat feet and back to tip toes again... may
go to toes three or four times before the rolling stops... and that is what it feels like ... the rolling sensation
you get standing on a boat deck ... a friend asked what was that when I did it the other day and I told her I
was going over a bump... she looked at the ground and back at me like I was nuts...and then told me ...
but you weren't moving ...

and like others have said if I am tired things are worse...

[sgerrard]

Thanks to all for responding.  At least now I know I'm not nuts...as far as balance goes anyway.  That is the hardest thing to explain to others who haven't been through this.  It's not like I get dizzy but rather a brief bit of coordination difficulty.  I hope it doesn't get any worse but from what I've read about radiation, it probably will when the tumor swells.  I'll just be more careful from now on.  Thanks again. 

I like the phrase "a brief bit of coordination difficulty." It sounds better than "spaz" to me. 

For what its worth (since every AN insists on being different), my "b.b.o.c.d." is exactly the same after CK as it was before. The swelling seems to mainly be increasing the "fullness feeling", and sometimes makes my left ear seem even deafer than it is.

Steve

[OTO]

Goinbatty,

I think it's those steps or moves that take you in two directions at once.  I was walking at the park uphill with a cross slope.  I had to stop and balance myself by looking at fixed object on the horizon to stop the world from spinning.   I have season tickets to the UH football games.  On games that were too loud, I actually stuck wads of newpaper in my ears.  Otherwise, I'll get a headache and really sleep late the next day.  Over the length of the season, it's got better.  It might be that the games are so exciting, and that I'm jumping up and down, yelling and screaming, that I overcome the fatigue thru adrenaline?

[goinbatty]

I'm beginning to learn what you mean about focusing on one thing.  Carrying on conversation with a lot of background noise, I find myself having to really concentrate speciifically on what the other person is saying and even then, I don't catch it all.  Also a lot of movement in my peripheral vision can sometimes be rough.  Maybe I need to wear blinders like horses do - HA!  Especially when doing all of this Christmas shopping.  Would probably save some money!
And speaking of chainsaws, me in the kitchen can be scary enough.  Guess I better leave the power tools alone for awhile. 
Our church is non-denominational.  At the rate I've been going lately, if I had to get up and down from a kneeling bench, I would likely end up under a pew.  But I figure as long as I can laugh at myself (hopefully) through all of this, I'll be just fine. 
Talking about that standing still mess.  Let's just say, I'm really careful closing my eyes while standing during prayer at church.  After all, don't want them to think I've been tipping the bottle the night before. 
Thank you all for your input and humor. 
Got the dates for CK - 1/7-1/11.  So relieved to have another detail taken care of.  Will keep you all updated when this is over with.