Author Topic: Happy 3 month post-op day to me  (Read 2383 times)

kixit

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Happy 3 month post-op day to me
« on: August 24, 2012, 05:11:36 pm »
Today, Aug 24th marks the 3 month post op mark for me. I don't feel any different than before surgery except knowing the tumor is gone. I still have balance issues, major fatigue and ticked off about a failed Baha surgery.

 My patience is running rather thin as I have tried to stay upbeat about it all. People see just the outside of me and think she's recovered, what's her problem? I'm tired of explaining me.

My doctor keeps saying the balance will get better. Well, it's no better now than it was a month ago. Granted, it's better than the first month after surgery but I want to walk NORMAL again!!

Thank you all for listening to my grouch session  :P
left side AN 9mm diagnosed 2/2012
SSD, loud tinnitis left ear
Translab 5/24/12
Baha surgery 8/1/2012 at UVA
Baha hook up 11/09/2012  : ) 

I am a happy camper : )

leapyrtwins

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Re: Happy 3 month post-op day to me
« Reply #1 on: August 24, 2012, 05:18:08 pm »
Hang in there.

In my experience, the early months were the hardest.  After that it was all downhill  :)

Keep in mind that lots of AN patients suffer from depression post op - I know I did until I got my BAHA - so don't discount the idea of seeking professional help if you feel you need it.

Best,

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

LakeErie

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Re: Happy 3 month post-op day to me
« Reply #2 on: August 24, 2012, 05:43:10 pm »
AT the risk of being repetitious, it took me exactly 7 months to walk with any real sense of normality. And as recently as this afternoon I had a momentary spell of feeling that everything was
bouncing,  and my walking was awkward. But it changed back quickly to more normal. My problems recently seem to be outside, indoors I am usually fine.
After surgery I found I  needed to run through a head movement routine periodically to keep myself on track with balance progress, as well as walking figure eight patterns. Walking with head movements of 45 degrees right and left, then up and down, over many months led to gradual improvement until one day I noticed I was indeed walking normally - at least most of the time. Good luck, it seems to me that you are on your way to more improvement.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

It is what it is

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Re: Happy 3 month post-op day to me
« Reply #3 on: August 28, 2012, 01:09:17 pm »
Wanting to feel "normal" makes sense.  The new normal takes some adjustment.  Do you have the vestibular exercises for after AN surgery?  My understanding is that we want to practice what makes us have problems with balance/dizziness over and over every day until our brains can relearn how to help us rebalance.  I'm not a PT but doing this every day seems to be helping me.  Maybe getting some help from a PT specializing in this could be of benefit?  You may have done this already? Please give updates.  Thanks to those of you posting about your continued improvement after the first several months.

Karen
.7cm, left side AN , Tinnitus, Hearing preserved, Middle Fossa 8/1/12 at HEI, Drs Friedman and Schwartz, Sharing your story is extremely helpful to me.

Jim Scott

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Re: Happy 3 month post-op day to me
« Reply #4 on: August 28, 2012, 01:44:30 pm »
Kixit ~

Your frustrations are perfectly normal and understandable to us.  I'll just add my voice to the chorus singing 'Time is on your side'.  In short: it gets better.  Honest.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: Happy 3 month post-op day to me
« Reply #5 on: August 28, 2012, 02:10:33 pm »
Kixit -

I have a copy of the vestibular exercises my doc gave me in a Word document.

If you'd like them, PM me your email address and I'll send them to you.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways