Author Topic: 8weeks  (Read 4455 times)

MMusella

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8weeks
« on: March 12, 2015, 08:33:33 am »
Well its been 8 weeks and Im done with ot and pt (have graduated) my life is completely back to normal.. I am back working and back with my kids hectic life..besides having no hearing in my right ear everything is back..I am a true believer in positive energy and surrounded myself with that..(i truely believe it is a mind over matter) the Human body is resilient, it never ceases to amaze me..life is Great..
40 years old, was diagnosed with a 3.5cm.(right side)AN in Nov, 2014 and having surgery on January 13th 2015, live in upstate NY..had a 13 hour surgery. .100%tumor removal. I did 8 weeks of vestibular rehabilitation and went back to my life and career,  with no side effects :)... life is great!!!

ANGuy

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Re: 8weeks
« Reply #1 on: March 12, 2015, 01:15:55 pm »
Bravo!
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Troutbc

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Re: 8weeks
« Reply #2 on: March 19, 2015, 09:59:38 am »
How have you adjusted to the SSD? I am dreading that outcome since I have perfect hearing now, I have surgery in 2 weeks. Is it really that bad or will I be fine once I'm used to it? I know it's going to be a change but was hoping for some words of wisdom :)

Thanks!
26 year old female Boston,MA
3cm AN diagnosed 2/13/15. 9.5 hour retrosigmoid surgery in April 2015 with Barker/McKenna

Mimispree

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Re: 8weeks
« Reply #3 on: March 19, 2015, 12:42:13 pm »
Michelle, that's the best post ever!  I'm with you, and someday soon I'm going to post an equally positive message. 

To Troutbc, I didn't have any hearing loss before surgery either, but I'm not having any real difficulty with SSD.  It's a bit unnerving (no pun intended) not being able to tell where sounds are coming from, but I can still sing on key, adjust levels and hear just fine.  I just tell my husband to whisper in my good ear and whisper his grievances in my bad ear, which works for both of us.

Michelle
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

ANGuy

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Re: 8weeks
« Reply #4 on: March 19, 2015, 04:24:54 pm »
How have you adjusted to the SSD? I am dreading that outcome since I have perfect hearing now, I have surgery in 2 weeks. Is it really that bad or will I be fine once I'm used to it? I know it's going to be a change but was hoping for some words of wisdom :)

Thanks!

I am not an expert on SSD.  My bad ear actually works pretty well.  But, the way I found out I had an AN was when I rolled over on my pillow and thought I hit the mute button on the TV at the same time.  When I lifted my head up I could hear the TV!  I put my finger in my left ear and I could hear the TV.  I put my finger in my right ear and I couldn't hear it!  Off to the ENT I went and an MRI showed the AN.  So, my bad ear at times turns itself to the "off" position and then back on.  I was walking around with SSD and didn't even know it until my good ear went on the pillow.  Now I check for it all the time and apparently my bad ear has been working pretty well as I haven't found any SSD episodes since that one time I caught it.

The way I figure it is, if I went through some period of time with SSD and didn't even know it, hopefully it won't be that bad when I loose that ear permanently.  While my bad ear is pretty good, the neuroto Dr says that my ABR test indicates that I am pretty much guaranteed to loose the use of it no matter what treatment plan I pursue.
Diagnosed June 2014 1cm AN at 47 years of age.  Had fluctuating symptoms since 2006.    6 mos MRI (Dec 2014) showed no growth, MRI  in July 2015 showed no growth.  MRI Jan 2016 showed no growth.  MRI Aug 2016 showed no growth.  I'm gonna ride the WW train as long as I can.

Troutbc

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Re: 8weeks
« Reply #5 on: March 21, 2015, 06:18:56 pm »
Thanks for all the answers guys!! Here is something I've been thinking about while preparing to be SSD (only 5% chance of my hearing being saved)... Does your voice sound different to you? It must sound different than hearing your voice with 2 ears. I work in a very professional environment where speaking up is necessary and I'm concrrned I won't be all to control pitch or hear myself properly. Does your voice sound the same to you, but just muted? Or normal?
26 year old female Boston,MA
3cm AN diagnosed 2/13/15. 9.5 hour retrosigmoid surgery in April 2015 with Barker/McKenna

lorigasper

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Re: 8weeks
« Reply #6 on: March 21, 2015, 08:11:53 pm »
We certainly wish you well on your upcoming surgery.  Prayers for a quick recovery!

I don't think that you'll be bothered the way you anticipate with the SSD.  At least for me, it doesn't sound like you're plugging your ears when you hear yourself talk.  I just get no feedback from the SSD side and hear myself like I always have on my good side.  Regulating pitch hasn't been an issue and my husband hasn't ever said that I'm talking louder than normal, so I assume I'm regulating my voice like I always have.

The only thing that's taken some time to get used to is the loss of directionality of sound.  Everything just comes in the good side.  It's kind of like hearing an ambulance siren and you don't know where it is coming from.  One time a friend greeted me (she was standing just outside my field of vision) and I did about a 355 degree turn to find her.  We had a good laugh!

Take good care of yourself, and take one day at a time.  You've found great resources here, and friends that will support you in any way they can.  Keep us posted on how you're coming along.  You'll be in our prayers.
4cm AN diagnosed 4/13
retrosigmoid 6/13
tarsorraphy 6/13, SSD, rt side facial paralysis
tarsorraphy reversed 7/14
gold weight and scleral lens 7/14
CROS
12/7 nerve graft 12/14

Mimispree

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Re: 8weeks
« Reply #7 on: March 21, 2015, 09:21:23 pm »
TroutBC:

I have the same experience as the previous post.  You will not have any problem speaking-up, etc.  Everything sounds the same, including my voice.  I do have trouble being in a loud environment, because loud noises increase my tinnitus and head pressure.  I do not speak louder than necessary and I don't miss much unless someone talks directly into my deaf ear.

Best wishes for a good recovery!
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

NYLady

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Re: 8weeks
« Reply #8 on: March 22, 2015, 11:49:28 am »
Hi TroutBC..

I think as long as the hearing in your non AN ear is normal, you will probably not have too much of a problem.  I had Gamma Knife about 8 months ago...my AN ear has lost all word recognition and only hears loud noise like if something large passes by or dishes clanging in a cabinet when you put them away.  Most likely all of it will go shortly, which was expected.  However, I do have compromised hearing in my "good" ear which does affect the sound of my voice.  Sounds like in a can, echo, and I do tend to speak very loud, till I am reminded to lower my voice.  That too is a strange thing to have to modulate the way you speak.  Sometimes I feel like all I am doing is moving my lips, but everyone hears me, but me.  All a matter of adjusting to what we have I guess.  I am so hoping hearing aids will still work for me.  I did use them prior to GK.  Just about my whole family has hearing issues and for many years I thought I was just part of the group.  Did not seek out any additional help until I experienced balance difficulties which lead to MRI and AN diagnosis.  Going to new audiologist next week and will post how I make out.

Meanwhile, all good thoughts and prayers go with you when you have your surgery.  So many people here have gone through so much and are such examples of strength and courage.  You will always find support and a listening ear on this forum.  Believe me, SSD is something you will adapt to if it happens.  Stay positive.

Best to you.

NYL