Author Topic: questions???  (Read 3648 times)

superrmaren

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questions???
« on: September 28, 2006, 04:28:00 pm »
here we go...lots of questions!  if you have ANY experience with any of these things, please post!!!  granted i only had surgery about a month and a half ago...

1. how long did it take for you to be normal?  to drive, to go back to work, to wear heels, etc?  i am (used to be at least) a very independent person. this sucks lol --  i walk with a walker which i've named T.R. aka walker, texas ranger haha.  i'm sure not gonna miss him!

2. for those with single sided deafness, did you ever not get up for work/life/whatever because you didnt hear your alarm? i find that when i lay on my "good ear" i don't hear anything -- even if the sound is coming from right next to me.

3. electric stimultion -- did you have it? did it help? did it hurt? (i'm a huuuuge wimp)  my neurologist says no, because it won't help. my therapist says yes, because the only other option is doing the facial exercises which i'm already doing.  this is the biggest problem i am faced with now.

4. when will my face move????  i hate this! my facial nerve had to be cut because it was going through the AN and the nerve was glued back together.  i have hope that the glue will work.  i couldn't have my eye lashes tinted (yes, they do this -- i was suprised, too. lasts about 4-6 weeks) because i couldn't close my eye the whole way. i have a platinum weight in it but the lower lid is "down" with my face; what cloing i can do with the upper lid because of the weight isn't being met by the lower lid.  i don't want to wash off eye make-up (don't wanna touch it -- see above: wimp) so i wanted my lashes tinted. my boyfriend says i'm beautiful w/out make-up, but we all know sometimes we just wanna wear it! 

5. do you think therapy helps?  of course it did in the hospital -- got you out of bed, got you moving -- but at home?  yesterday my occupational therapist had me making chains w/ things like paper clips, crumping up paper, etc.  can't i just do this at home? i went to the mall -- mostly in a wheel chair, but i did it.  aren't all the things you do at therapy like what you do at home???  grrrrrrr...

maybe i am just in a mood - as we know we get in these. reassure me?   

more to follow, i'm sure.

xox
maren
"the good old days weren't always good, and tomorrow ain't as bad as it seems"

4.5cm tumor resected at Johns Hopkins in 2006.  Drs. Tamargo and Minor
numerous facial plastic surgeries
12-7 nerve graft 2008
platinum eye weight removed 2009
deaf right - BAHA
residual balance issues
severe dry

Gennysmom

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Re: questions???
« Reply #1 on: September 28, 2006, 04:43:38 pm »
I'm only 3 months out, so I'm still in some of the same boat as you, but I can answer you this:  go to Harriscomm.com (it's for deaf or hearing impaired persons) and get yourself a vibrating alarm.  I've slept anywhere from 5-20 minutes through a blaring alarm, and knew it would be worse after surgery, so I broke down and got one.  It's fabulous, get up on time every day....and yes, it does have a snooze button.

Kathleen
3.1cm x 2.0cm x 2.1cm rt AN Translab 7/5/06
CSF leak 7/17/06 fixed by 8 day lumbar drain
Dr. Backous, Virgina Mason Seattle
12/26/07 started wearing TransEar

lmurray69

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Re: questions???
« Reply #2 on: September 28, 2006, 04:52:18 pm »
I have single sided deafness/ I bought a alarm clock that you can put under your pillow and it viberates and let you know what time it is..it also rings.but sence you want to lay on that side . the clock will work they also have wrist watches, they were to big for me .. I also have a tty phone and my lights flash when someone calls..it's kinda nice...my neighbors think were crazy..but what do they know...
radiation feb 05, gammaknife, tumor is 1.2x0.08/ surgery Nov 1st 2006 Dr House/Swarts/

Kathleen_Mc

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Re: questions???
« Reply #3 on: September 28, 2006, 05:00:47 pm »
maren: I think I started driving again around 2-2 1/2 months and returned to work at 3 1/2 months (though I think it was too soon and I pushed myself too hard).
I never have gotten the special alarm clock, I have two and put one on either side of the bed and I have only slept through them once in the last 16 years.
I returned to heels but don't wear them often and look like a drunk in them (but that's ok 'cause usually it's at parties I wear them!)
My facial nerve was cut but not "glued" so I can't comment on that, I've had several "plastic" repairs done to my face to account for the loss of the facial nerve.. I only wear make-up when I go out to parties because of the eye issues (I used to wear make-up and heels to work everyday!)
To ask when life will be normal again is a hard question.....I have never returned to my "pre tumor normal" and have acepted I never will, I have "a new normal"....but I still grieve who I used to be, sometimes.
Take care, Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Captain Deb

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Re: questions???
« Reply #4 on: September 28, 2006, 05:05:26 pm »
I found the best way to regain my balance is by simple walking--on a flat surface with a friend to hold onto is best. I also started working with a vestibular therapist at about 4 months because my balance wasn't coming back very fast--she really helped alot.  It will come back by itself slowly, but you have to force it if you really want to see results. At  6 weeks, I was walking up and down the block of my friends quiet Florida neighborhood by myself--slowly, but I was still doing it. 2 to 3 times a day.  It really wore me out, so I rested alot.  I never used a walker, cane or any kind of aid. My doc said not to so I wouldn't become dependent on it.

Still avoiding the heels! Just keep moving--it is the best therapy.

Capt Deb 8)
"You only have two choices, having fun or freaking out"-Jimmy Buffett
50-ish with a 1x.7x.8cm.AN
Mid-fossa HEI, Jan 03 Friedman & Hitselberger
Chronic post-op headaches
Captain & Designated Driver of the PBW