this may be permanent...

[mattsmum]

i am a year post radiosurgery now - and amongst other issues have had balance difficulties.
i have made some improvement with vestibular rehab, but it seems to have plateaued/ slipped back. this week my therapist told me she thought it unlikely i would get back to night driving at all and that i may well find the 3 or 4 days work a week i was planning to build up to (starting a phased return in september) too much. i am now wondering if my employer will want to keep me on in that case.
i will not know what i can do without trying - so she supports my attempt - but there was a big BUT in her voice. ho hum.
i am not expecting solutions - but are there others who have not been able to go back to their previous careers?

vikki

[sharonov]

Vikki,I'm so sorry to hear about your issues.  If you don't mind my asking, did you have balance problems before the surgery? 
Sharon

[mattsmum]

hi sharon - thank you.
i did have balance problems before treatment too; albeit not so bad. in fact - looking back - that was the first thing i noticed, a good 6 months or so before the tinnitus/hearing loss. my job invoves me getting called at night and i found i could not get up in the dark without holding onto walls etc. i was also bumping myself repeatedly on door frames etc. and going even further back - i  had been having episodes of very brief vertigo - did not fall but had to sit down/hang onto something for a few seconds. i did not seek medical help for any of this; i thought it was my age as i read menopause can cause dizziness (i was 44 when diagnosed and had an early menopause). i then took a break from work (before diagnosis) to spend more time with my somewhat troubled son, and 6/12 into that was diagnosed. by then i was also aware that i became dizzy with rapid head movements and with the hearing issues did think i may have an AN.
i do suspect now that if i had continued to work, i would have found my balance a lot more of a challenge than i have being at home.
and since treatment it has been a whole heap worse. straight after treatment it was a lot worse for a few days (as i had read may happen) but did then go back to my then 'normal'. but, after a month or 2 it just progressively got worse. it has improved - some - but my vng shows almost total loss of function on AN side, and failure of brain compensation. my post treatment mris show swelling, and inflammation of the cerebellum.
at home i am not too bad now, but my job may be a different kettle of fish...
vikki

[stoneaxe]

I didn't see much improvement from standard balance therapy. It wasn't until I really pushed hard to learn standup (see standup paddleboarding post) that I saw improvement. Pushing for balance beyond the norm and a broad flat visual plain of the water is the key i believe. I still have some slight problems if I'm suddenly in the dark but night driving isn't an issue.

[sharonov]

I have a friend who suffers from Chiari malformation, which is when the brain grows down into the spinal column (or something like that--sorry I'm not more clear.)  It's the next step up from spinal bifida.  Anyhow, he has balance problems and was given an interesting exercize that has worked well for him.  It's with the eyes.  You hold your head perfectly straight and look up as high as you can.  Keeping your head straight, just moving your eyeballs, you look down as low as you can.  You do that as rapidly as possible for 50 times, working up to 100 after a few days.  You also look to the side as far as you can, then to the other side, again starting with 50 times.   

I hope that this will improve, and also that your son is having a better time of it. 

[Syl]

What has helped me alot with my dizziness/light-headedness/wonki-head is my part-time job, which I like to call my therapy. What I do there is help make tortillas. As the tortillas move along on the conveyor belt, I collect & stack them. This requires that my eyes move back & forth alot. Remember the I Love Lucy episode at the chocolate factory? Lucy & Ethel can't keep up with the conveyor belt as the chocolate passes them by. It's sort of like that. It's wonderful vestibular therapy. It's easier to do my therapy for hours if I'm working than it is to stick to a therapy routine at home. That's why I do it.

Syl

[msmaggie]

That's wonderful, Syl!  You are keeping busy and doing therapy at the same time.  I love it!
Priscilla