Author Topic: Hearing impovement  (Read 3763 times)

wendysig

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Hearing impovement
« on: June 20, 2008, 05:24:04 am »
Hi All -
Has this ever happened to any of you?  When I was first diagnosed with an AN, I was also told I had lost 20% of my speech discrimination.  A few weeks ago i had a big drop in my hearing and it was down to 50%.  A week later it went down another 26%.  The last few days when I first wake up, my ear has only a slight sensation of pressure, and  although my hearing is not great, there is a definiite improvement.  In the end of May my doctor put me on a two week tapering doese of prednisone, which had no immediate effect.  I have asked him, but he hasn't yet answered this question, could this be a belated reaction to the prednisone?  Is there a possibility it will continue to improve?  Has anyone had this happen to them?  I am going for another audiogram today.  So far, I think my ear and hearing are the same as they have been for the last few days.  I guess this will tell the story.  Wish me luck.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

leapyrtwins

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Re: Hearing impovement
« Reply #1 on: June 20, 2008, 07:13:44 am »
Hi, Wendy -

this didn't happen to me but I'm pretty sure I've read about it happening to others somewhere on this forum.  There are so many posts, it's sometimes hard to remember.
 
My hearing stayed the same - diminished - from the time I was diagnosed to the time of my surgery where I lost it completely.  Then again, it was only about 6 weeks between my diagnosis and my surgery.

Good luck with today's appointment.

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

wendysig

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Re: Hearing impovement
« Reply #2 on: June 20, 2008, 07:27:39 am »
Hi again Jan and thanks.  I am hopefully optimistic, but am also prepared for the idea that this might not make any difference.  I thought since this was happening though, it wouldn't hurt to try.  BAHA sounds great, but if I can save my hearing and it will be decent, I'd rather have that!  I'll post again later after I hear from Dr. Choe.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

Mickey

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Re: Hearing impovement
« Reply #3 on: June 20, 2008, 09:08:59 am »
Hi Wendysig! We have a little in common! I`m presently on predisone for a little clogness l was feeling on AN isde. It`s my 5th day and I do feel relieved! My hearing is which wasn`t too bad seems sharper. Maybe we have somethig here? I`m waiting and watching, Keep in touch, Mickey

Jim Scott

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Re: Hearing impovement
« Reply #4 on: June 20, 2008, 12:45:34 pm »
Wendy:

While I sincerely hope your suddenly and inexplicably improved hearing remains, I would be very cautiously optimistic.  With Acoustic Neuromas, it seems as if almost anything can happen but improved hearing does occur, so it is certainly not outside the realm of possibility.  I wish you all the best with your audiogram today.

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.

Debbi

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Re: Hearing impovement
« Reply #5 on: June 20, 2008, 04:03:34 pm »
Wendy-

Hoping your appointment today went well??

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

wendysig

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Re: Hearing impovement
« Reply #6 on: June 20, 2008, 11:59:46 pm »
Hi and thanks for your good wishes.  Unfortunately, things did not go as I'd hoped.  Although there was an improvement in my speech discrimination - it went from 24% to 40%, that was it.  My level of hearing actually decreased (this was what the doctor said, I don't know the actual term) so there has been no significant change.  He is still recommending translab and eventually, BAHA as he feels this is my best chance to hear well again.  I have to say it made me kind of sad, I guess I got my hopes up too much.  It's been said before and I'll say it myself, it could be worse, but it really stinks.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

leapyrtwins

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Re: Hearing impovement
« Reply #7 on: June 21, 2008, 11:58:47 am »
Wendy -

sorry the appt. didn't go the way you hoped.

It's perfectly okay - and normal, too - to be sad.  In a way, you are mourning a loss - IMO it's part of the AN process, at least for some of us.  I whole-heartedly agree.  It could be worse, but it does really stink.

Hang in there,

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

wendysig

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Re: Hearing impovement
« Reply #8 on: June 22, 2008, 09:37:15 pm »
Hi Jan -
Thanks for your reply.  My biggest problem with this disappointment is that I had come to terms with my hearing loss the first time my hearing dropped so dramatically and suddenly.  To have it improve, but not enough was a blow, and that was truly  how it feels, that is a little harder to get over.  I would have been better, from my point of view, if it had stayed the same.  I thought if I didn't get  good news it would not upset me again, but it just seems harder the second time around.  I guess I'm feeling sorriier for myself because I was so much more hopeful this second chance would mean my hearing could still be saved.  This was like an ice water in your fact reality check.   I've now learned to keep my expectations with this thing more tentative, but will remain reasonably optimistic with regard to my chances for a good outcome with my surgery.

Wendy

P.S. I know this is not the end of the world.  BAHA still awaits me in the future.
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

leapyrtwins

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Re: Hearing impovement
« Reply #9 on: June 22, 2008, 09:54:32 pm »
Wendy -

I totally understand.  Sometimes not having hope is less emotionally taxing than getting your hopes up and then having them not realized.  It's kind of like a rollercoaster ride or a see-saw.

I think that being reasonably optimistic - I like to call it cautiously optimistic - is a good plan.

Stay strong,

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

marg

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Re: Hearing impovement
« Reply #10 on: June 22, 2008, 11:56:26 pm »
Hang in there Wendy.  I lost all my usable hearing after my surgery...... and I did grieve.  That is a normal thing to do.  I want you to know that a BAHA is not your only option.  I have a TransEar 'hearing aide' and I am very happy with it.  It doesn't totally replace what I lost... but it does help some - enough that I can still teach 2nd grade and understand my kids much better than without it. 
marg
Marg 
 4 mm  AN removed .. middle fossa   5/07 OHSU  Dr. Delashaw
AN scraped off facial nerve & balance nerve removed
 MRI  follow up showed AN gone ... thank you God
Some facial paralysis- . SSD weeks after surgery.  Trans-Ear Nov.2007 ... it really helps !

wendysig

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Re: Hearing impovement
« Reply #11 on: June 23, 2008, 05:33:12 am »
Hi JAn -
How are you doing?  I appreciate what you said, and maybe "cautiously optimistic" is more accurate.  I bave always tended to believe that if you believe good things will happen, they usually they will.  While I've certainly had disappintments before because of this line of thinking before, I have found it usually serves me well.  I truly do believe in the power of positive thinking.  This is obviously one situation where a more cautious approach is called for.  Lesson learned.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

wendysig

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Re: Hearing impovement
« Reply #12 on: June 23, 2008, 05:44:49 am »
Hi Marg -
Thanks for your reply.  When I had my first dramatic hearing drop a few weeks ago my speech discrimination went from 80% to 50%.   My doc tried  a two week prednisone taper,  and during that time,  it dropped another 26%., so my speech discrimination was down to 24%. Suddenly last week I felt like I was hearing better and had yet another audiogram and it was very disappointing to have it only go back up to 40%. I had heard about BAHA and Transear here on this forum, and both Jan and my doc had given me information on BAHA and TransEar.  Although I know some people love thier TrasEar and obviously you are one of them, I can't see myself being happy with having to have something in my ear all the time.  That's why I am focused on BAHA.  Should it not work out for some reason, TransEar is certainly a very good option.  Thanks again for your thoughtfulness.

Wendy
1.3 cm at time of diagnosis -  April 9, 2008
2 cm at time of surgery
SSD right side translabyrinthine July 25, 2008
Mt. Sinai Hospital, New York, NY
Extremely grateful for the wonderful Dr. Choe & Dr. Chen
BAHA surgery 1/5/09
Doing great!

claire1

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Re: Hearing impovement
« Reply #13 on: June 23, 2008, 10:03:24 pm »
Hi Jan

I have a ? about the BAHA. My otorhinolarygologist told me he could get me a "TRIAL" BAHA system to try before the surgery and the expense of the real system to see if the sound is what would work well with me.  He said that many people don't care for the sound and clearity of the BAHA.

Since you have the real deal, can you think of how they could attach a "TRIAL" BAHA without surgery?
I appreciate any thoughts or/and information you might have.

My left AN ear is dead prior to GK and the right AN ear I will have the CK done due to the fact that it has better hearing preservation. I really don't want to be signing at this late stage of my life if I can help it.
You are my inspiration
Have a Great Day.
Claire

leapyrtwins

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Re: Hearing impovement
« Reply #14 on: June 23, 2008, 10:11:56 pm »
Hi, Claire - thanks for saying I'm an inspiration - I do what I can to help here  :)

I imagine that your doc is talking about giving you a BAHA "demo" to use for a few days. 

The demo is basically a processor attached to an elastic headband that you can wear on your head - since the real BAHA involves implanting a titanium fixture into your skull.  I was reading on my doc's website just last night that BAHAs on headbands can also be used for small children since they don't always like to do the surgery on young patients until they reach a certain age.

I tried the demo in my doc's office and was very impressed with it.  It was an amazing experience.  He put the headband on my head, had me plug my good ear with my finger and proceeded to hold a conversation with me.  I could hear everything he said to me quite clearly.  I was thrilled!

I have had no issues with the sound or the clarity of my BAHA.  Keep in mind though that having a BAHA won't enable you to hear like you used to.  It's not the same as "normal" hearing, but IMO it's the next best thing.

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

 


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