Author Topic: Been deaf 26 years...got TransEar today!!!  (Read 3630 times)

LavaTea

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Been deaf 26 years...got TransEar today!!!
« on: April 17, 2008, 11:09:25 pm »
After 26 years of being deaf I got a TransEar today! 

When I was 2 months pregnant with my first child I found out that I had an Acoustic Neuroma.  I had to wait until my baby was 8 months along and then the doctors said they need to do a C-section because of the rapid growth of the tumor.  Due to estrogen changes during pregnancy my tumor had grown to 6 cm.  In short, my doctor pretty much said “oops, it’s now so large I can’t remove itâ€?  I was sent to the House Clinic in Los Angeles and Dr. William House had already retired and was just teaching but he and Dr. William Hitselberger operated on me when my baby was 10 days old.  I had to leave him in Dallas with my Mother.  It was the hardest thing I had ever had to do!!  Dr. House said my tumor was the largest tumor that he had removed except for a lady from a 3rd world country.  After my surgery I had an eyelid spring inserted by Dr. Levine.  I was in L.A. for 4 weeks and returned to my newborn baby when he was 5 weeks old.  Three years later I went back to L.A. and had a 7/12 nerve graft.  Then 15 years after my first tumor removal my tumor returned and I had it removed again but in Dallas this time by a doctor that had trained at the House Clinic. 
All of this started 26 years ago so I have been deaf a really long time.  I didn’t know because of this how the TransEar would work for me.  I have been deaf longer than I have been hearing.  I got my TransEar today and wore it for 5 hours.  Today at least I had to turn it up to 3 to 4 to hear.  My Audiologist said to give it a try and that if I continued to turn it that high that she could program it higher and then I could hear at a level 2.  She said this would help the battery life.  I think I’m am going to really like the TransEar.  The only thing that’s going to be a challenge is that it doesn’t go straight in.  I don’t know if it’s from the AN surgeries or what but my ear canal goes straight and then makes a sharp 90 degree turn.  One good thing about that is that I’m NOT going to lose the aid by having it pop out of my ear.  It’s REALLY hard to get out.  It has to be twisted and turned.  It’s even harder to get in.  I’m sure I’ll get used to doing it in time.  Does anyone else have a weird shaped ear canal like mine?  I was told it wasn’t normal.
 

« Last Edit: April 18, 2008, 09:12:17 am by LavaTea »
1st AN 6 cm 8/82 at age 22 Dr. William House & Dr. Hitselberger St. Vincent Hospital Los Angeles-Translab
2nd AN 5/97 Dr. Fred Owens Baylor Dallas
TransEar Hearing Aid user as of 4/08

ppearl214

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #1 on: April 18, 2008, 05:34:40 am »
Hi Lava and welcome! Good to see you here and thank you for sharing your AN (and life's) journey with us..... you certainly had your hands full. I know Rick from Transear logs on here and is able to answer some questions, as well as AN'ers that have tried Transear... some with success and some with issues.  I have a feeling some with log on and be able to help answer questions you may have.

Thanks again for sharing this with us.... and looking forward to your further participation here on the forums.

Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

leapyrtwins

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #2 on: April 18, 2008, 05:56:01 am »
LavaTea -

What an incredible story!  Thank you for sharing it with us.

Imagine being able to hear after 26 years!  I don't have aTransEar - I have a BAHA - but I've heard wonderful things about them.

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

jerseygirl

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #3 on: April 18, 2008, 07:37:21 am »
LavaTea,

This is an unbelievable story! I am glad TransEar is working for you. How is your hearing in non-AN ear?


             Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

MaryBKAriz

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #4 on: April 18, 2008, 11:47:21 am »
WOW!!!

I was so glad you have heard again after all these years. Sounds like you really went through it when you were pregnant!

Cheering you on in your new situation.

Mary
Diagnosed March 24, 2008, 1.1cm, right side, "Goldie" - small but mighty!! :-(
Hearing, lottsa balance problems and a few facial twitches before CK
CK June 2, 2008, BNI in PHX, Drs Daspit/Kresl, side effects,steroids helped. Getting "sea legs".
Apr 2012 - Still glad I chose CK

Boppie

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #5 on: April 18, 2008, 03:06:04 pm »
Hi Lava,  I am so glad to know you are getting sound on the deaf side once again.  You and I have something besides AN and TransEar in common.  My ear canal makes a 90° turn too!  I was fitted a few years ago and my audiologist and the TransEar tech told me about the unusual shape.  I have no trouble with my insert.  They built it to fit very well.  I had a few sore spots at first so my audiologist did some minute smoothing on the insert end and all has been well since. 

Congratulations!

LavaTea

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #6 on: April 18, 2008, 08:49:27 pm »
I wore my TransEar again for 5 hours today.  My ear is a little sore so I may give it a rest some tomorrow. I have good hearing in the left ear so I would think I wouldn't have to turn the volume up to 3 1/2 or so but I do to get any benefit.  Maybe being deaf for so long my brain just has to have some adjustment time. 

I am glad to hear that I'm not the only one with a ear canal that turns a sharp 90 degree angle.  Thank you for your support and comments.  I hope to help others any way I can as you all seem to do.

~LavaTea
1st AN 6 cm 8/82 at age 22 Dr. William House & Dr. Hitselberger St. Vincent Hospital Los Angeles-Translab
2nd AN 5/97 Dr. Fred Owens Baylor Dallas
TransEar Hearing Aid user as of 4/08

Boppie

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #7 on: April 18, 2008, 10:35:31 pm »
Lava, take it slow and if you have a sore spot or two, let it heal before trying to reinsert the ear probe.  There is a break in period for your brain to assess what is going on.  I was told to set my aid at the lowest I could (2½) to hear a small benefit, and to wear it just a few hours a day for the first week.  Once my ear canal and brain adjusted I was able to turn up to 3.  But even today at 2 years TransEar use I still don't tolerate the strong vibration I get above 3.  I was told I shouldn't need a vibration that irritated me to make the TransEar work.  I did however have two sore spots in the first week.  One I could see as I looked in a mirror.  The spot was so tiny like a pimple size dot but it really hurt.  Another sore was deep inside at the far tip end of the canal near the bone.  My audiologist smoothed both spots in one sitting and then reinserted several tries to test for more sore spots.  I believe I waited four days for the sores to heal and before going back for the adjustment.

Make sure to put the a small ribbon of auragel or OTO Ease on the end before you insert.  The gel eases the insertion without friction.  At first I found taking the aid out of my ear more difficult than inserting.  After I found a favorite way to move the aid to make it slide in just right, things improved dramitically.  Having the unique 90° turn on the end was no problem, really.  The ear canal is very flexible right up to the spot where the TransEar ends.  That is the spot closest to the bone.

I was told brain takes about two weeks to sort out the sound that is coming through the bone and from the TransEar.  I'd like to hear more about your progress.
« Last Edit: April 18, 2008, 10:43:34 pm by Boppie »

krbonner

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #8 on: April 19, 2008, 09:22:18 am »
If you have a sore spot, please consider going back to your audiologist to have the TransEar sanded down just a bit (by hand) to get a perfect fit.  It shouldn't hurt to wear it.

I've been wearing mine for almost 3 months, and really like the boost it gives me.  I  keep the volume on mine turned up high most of the time because I like feeling the tiny vibrations (they're reassuring to me), but that's a matter of personal preference! 

Katie
diagnosed June 2005
2.3cmx1.6cmx1.4cm left AN
translab Sept 13, 2006; Drs. McKenna and Barker in MA (MEEI/MGH)

Jim Scott

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #9 on: April 19, 2008, 01:11:55 pm »
Hi, LavaTea:

Welcome - and congratulations on being able to hear again after 26 years. 

We're so happy for you!  What a story....and thanks for sharing it with us.  I trust your TransEar unit will be adjusted as necessary and you'll be more comfortable with it in time.  Meanwhile, enjoy your newfound ability to hear bilaterally, at last!  :)

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.

ixta

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Re: Been deaf 26 years...got TransEar today!!!
« Reply #10 on: May 12, 2008, 02:04:05 pm »
Selling mine...

If anyone has an ear canal shapped like a cat. Drop me a line.
5cm left AN from IAC to cerebellum/brainstem.
Zapped out by Shahinian @ SBI over the course of 6.5 hrs on Monday 11/27 2006.
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