Author Topic: Adventures in SSD - Transear  (Read 4948 times)

Crickett

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Adventures in SSD - Transear
« on: December 03, 2008, 12:04:29 am »
I've spent hours reading of all your posts about coping with your SSD; thank you so much for sharing!  I've gotten so much information!  I thought it was time to stop lurking.

After consulting with the House Ear Institute and UCLA in the past year about the BAHA, I've decided to make the leap and NOT get one.  In fact, I'm angry that I didn't get objective information from either of these two respected institutions about my options.  Neither said anything about the Transear, an alternative to surgery.  UCLA said nothing negative when I asked about it, but they and HEI really wanted to sell the BAHA (and I think they're in business to make a LOT of money.  Am I too cynical?).  Today I got the Transear molds done, and hope to get the device in a couple of weeks.  It seems that so many of you have had successes with both the BAHA and the Transear (and problems too) but I'm really not interested in surgery, especially if there's a comparable alternative.  We'll see.

Any pieces of wisdom that you'd like to pass along?  Those of you with a Transear, any tips to share?  Dos and don'ts?

mimoore

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Re: Adventures in SSD - Transear
« Reply #1 on: December 03, 2008, 06:45:36 am »
Welcome Cricket!

I am jealous, in Canada we don't have the Transear yet. hummf
I can't wait to hear all  about what you think about it.

As you know you will find lots of valuable information here. Welcome aboard!

Michelle  ;D
« Last Edit: February 13, 2009, 07:30:04 am by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

Jim Scott

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Re: Adventures in SSD - Transear
« Reply #2 on: December 03, 2008, 09:19:24 am »
Hi, Crickett ~

Welcome to the forum.  I'm pleased that you've decided to post.

I've been SSD for close to 10 years and have not chosen to avail myself of either a BAHA or Transear.  Just a personal choice and absolutely no reflection on the efficacy of either device.  The posts I've read from folks with a BAHA have been almost uniformly positive and the Transear unit seems to be equally effective for most.  I cope quite well with my SSD and like you, I have no interest in further surgical adventures, thus eliminating the BAHA option.  Of course, I may change my mind down the road and go with one or the other but for now, I'm good.  :)

I have no idea whether the House Ear Institute is 'pushing' the BAHA for sheer profit or because they honestly believe it is a great help to those with SSD.  Most likely a bit of both.  Apparently, their 'pitch' didn't work on you. However, I'm sure the Transear device will be satisfactory and we'll look forward to reading about your experience with it as a guide for others contemplating going with the Transear instead of a BAHA. 

Jim
« Last Edit: December 03, 2008, 04:42:53 pm by Jim Scott »
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.

krbonner

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Re: Adventures in SSD - Transear
« Reply #3 on: December 03, 2008, 01:35:43 pm »
My only real tip about the TransEar is that it has to fit tightly, but not so tight that you get any spots that are sore or uncomfortable.  I didn't have any trouble getting that balance, but for some it can take a few trips to the audiologist to get the fit just right.  If they do need to sand down any spots taht are too tight, make sure they do it by hand and not by machine.  A machine will take off too much, and then you lose the efficacy.

Also, I will say that while I do notice some difference when I'm wearing my TransEar, it's my husband who *really* notices!  Apparently I have a lot easier time hearing him with it in, but my brain doesn't consciously perceive the difference a lot of the time.

Good luck!

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

Crickett

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Re: Adventures in SSD - Transear
« Reply #4 on: December 09, 2008, 10:51:29 pm »
Thanks for welcomes.  Katie thanks for the tips on the fit; I think I've read some of your other posts about this, and quite frankly I'm not really looking forward to the programming/fitting period coming up.  I'll go back and reread what others have written when I get mine.

I have about one more week (they said 2 weeks to get the transear) to wait and I'm getting anxious.  I'm trying to lower my expectations of what it can do, so I can be pleasantly surprised.  Funny what having low standards can do for one's outlook!

jazzfunkanne

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Re: Adventures in SSD - Transear
« Reply #5 on: December 10, 2008, 07:22:01 am »
let us know how you get on with the Transear, there is training just now in the uk and like you i would rather go down that road first than more surgery.
over 4.5cm AN removed dec 06

arkansasfarmgirl

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Re: Adventures in SSD - Transear
« Reply #6 on: December 12, 2008, 10:19:33 am »
Just wanted to comment on House and the BAHA...  I got the BAHA implant at the same time as my AN surgery, so that didn't require too much of a decision on my part, since there was not an additional surgery involved.  But the point I want to make is that no one there brought it up to me, or even so much as told me that was an option until I asked about it the week before.  So it's not like it was pushed on me at all.

Hope you have good luck with your transear!!!!!!!!

Vonda

Jeanlea

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Re: Adventures in SSD - Transear
« Reply #7 on: December 12, 2008, 08:49:32 pm »
Cricket,

I hope that you like the TransEar.  I didn't want something permanently attached to my head.  Just a quirk of mine.  I hear (no pun intended) that there is newer version than the one I have.  That should  be the one you are getting.  In the beginning it seems to be better to keep the volume down around 2 and slowly move it up over a long time period.  I've had mine for nearly two years now and keep it around 3+.  The longer you have it the better it seems to work.  If you have questions TransEar is a great company for getting help.

Come back and tell us how you like it.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

lacey7

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Re: Adventures in SSD - Transear
« Reply #8 on: December 13, 2008, 01:05:25 am »
Hi Donnalynn,
I'm Lacey who sent you the PM.  Just wanted to tell you to go with the Creator.......He can do all.
Sometimes, unfortunately, in my life, he hasn't done everything I've asked Him to......but there's a reason.  I know that He will tell us when we see Him!!!!
I hope you find out that you Do indeed have some hearing.  That would be great.
Have you read the book that everyone is talking about "The Shack".  It's just a paperback.  It's by Wm. Paul Young.  You can get it at a bookstore or Amazon, or the ChristianStore online.  It is wonderful, and may help answer some of your questions.  Anyone who is reading this.....please get the book.  I think it's around $11.00, and for that amount of money, it is SOOOO worth it. 
Lacey
Diagnosed 4/15/08.
AN - 1.4 cm.  Translab surgery 6-26-08.  SPF leak 7-5-08, and went back into surgery 7 -6-08.
SSD left side, after surgery
Dr. LaRoure - Providence Hospital, Southfield, MI.

Cynaburst

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Re: Adventures in SSD - Transear
« Reply #9 on: December 20, 2008, 09:31:56 pm »
Hi Crickett,

I am also in L.A. and have had a Transear for the last 1.5 years.  I found the Transear on my own and have been pretty happy with it.  I am wondering if you are Nickie who I spoke to at the birthday party about the device, or someone else?   I would love to talk to you further (and if you are Nickie, please keep me posted with how you like your device!)

PM me your e-mail.

Cynthia

Crickett

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Re: Adventures in SSD - Transear
« Reply #10 on: February 10, 2009, 10:44:13 pm »
I have read so many of your comments throughout this forum about the Transear, and would like to make an update about my experience.  I received it the first week of January, and have had it reprogramed 2 or 3 times since then, about every 2 weeks, and have had it about 5 weeks now.  The audiologist I've worked with has been very accommodating.

I am sad to report that I am unimpressed.

Unlike most of you, I did not have an AN.  I lost all hearing suddenly in the span of 10 minutes one day, had an MRI which revealed nothing.  My good ear is really good.  18 months later I got the Transear.  I was hoping that I would be able to hear as I did before I lost all hearing in that ear (wishful thinking!), but such was not the case.  I'm not even sure that it's working properly; it seems to lose contact so that I don't get any help at all.  I can close the good ear and hear the "processed" sound, so I know it's functional, but at other times not.  But maybe it is doing something, but I still am saying "huh?" a lot.  Less than without the Transear?  I don't know.

The other thing is that I teach in a classroom that has cement floors, 4 live parallel walls, and open beamed ceilings.  Meaning: The acoustics are HORRIBLE!  What were the architects thinking?!  Many normal hearing teachers have a hard time hearing.  Consequently, I am still deciding if the Transear is helping.  I would love to report "OMG!  This is so great!  This is so much better!"  It's not.

I really hope that the Transear helps others; I have read so.  I also read that the success of the Transear kinda sneaks up on you; that you realize that you prefer to use it rather than not.  That may still happen, I hope. 

Gosh, this post reads so depressing!  Like Eeyore!  I'm just trying to be realistic: $2900 is a lot of money.

Jeanlea

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Re: Adventures in SSD - Transear
« Reply #11 on: February 13, 2009, 09:53:44 pm »
Crickett,

I can understand how you feel about the TransEar.  I felt the same way in the beginning.  It seems like it takes time for the brain to adjust.  I've had mine for two years now.  I'm in a classroom just like yours with brick walls and tile floors.  There is a fair amount of noise.  The TransEar really does help, though.  During the last two weeks I've been without it.  I DEFINATELY notice the loss of hearing.  I feel so deaf. It's quite annoying. Give it some time.  It's not the same as having two working ears, but it does help.

Jean
translab on 3.5+ cm tumor
September 6, 2005
Drs. Friedland and Meyer
Milwaukee, WI
left-side facial paralysis and numbness
TransEar for SSD

Leftie

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Re: Adventures in SSD - Transear
« Reply #12 on: February 16, 2009, 01:02:56 pm »
In an hour I am taking my TransEar in for repair and I know I am really going to miss it!!!  I have had it for about 10 months now and if I had to rate it, I would say it is about a 30% improvement   Go for it
2.5cm acoustic neuroma removed using middle fossa approach June 2002 by Dr. Brackmann at the House Clinic in LA.
Facial paralysis resolved to facial weakness.
Also have a benign meningioma (calcified) - no treatment required, just follow-up scans.
Received Transear Feb. 25, 2008.

Crickett

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Re: Adventures in SSD - Transear
« Reply #13 on: February 16, 2009, 02:03:03 pm »
Thanks for the info Jeanlea and Leftie.  The other day I saw the audiologist and said that I just don't think it's working as well as it should.  I was in a meeting and I couldn't hear the person sitting next to me, and I had to turn my head (as I do when I don't have the Transear).  I thought, what good is this?  I've got it up to 4 and I still can't hear?  We tested it and I can hear a few things and have some word recognition.  I'm seeing if the Transear people can help me out, so he's sending it back.  I go back to work tomorrow not using it, and I may (I hope) realize that I've enjoyed some improvement after all.  We'll see.

 


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