Author Topic: How soon to address lack of hearing  (Read 4182 times)

MNTim

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How soon to address lack of hearing
« on: July 09, 2011, 07:24:07 pm »
This entire process has been really slooow for me.  It took one and a half years and three procedures for the tumor to be removed.  It also took nearly as long for me to begin visiting the forum.  I think I am missing out on some things because of my lack of hearing from my left ear.  I find myself avoiding conversations in certain situations or wondering what the joke was that everyone but me is laughing about.

My main goal has been to be free of the tumor.  Now that I am I need to address my hearing issue.  I am looking for feedback on how soon each of you with hearing devices got them.  Also what device are you using? 

Thanks for sharing.
Tim
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

Rivergirl

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Re: How soon to address lack of hearing
« Reply #1 on: July 09, 2011, 07:36:09 pm »
MNTim, I have SSD and no hearing device as of yet nor am I thinking about one at this time.  Since my surgery I hear better with only one ear.  Anyway this is a great forum for your question as there are many with hearing devices that can give you lots of information.  If you have a moment, go to the thread in the hearing section on funny things you hear, it is hysterical and we all know what it is like to be SSD.  Best of luck with your research.
Diagnosed 6/2008
Right AN 2cmx8x9
Sub-Occipital at Mass General with Martusa and McKenna on 5/31/11
Right SSD, very little taste
I think I will make it!

leapyrtwins

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Re: How soon to address lack of hearing
« Reply #2 on: July 10, 2011, 06:22:31 am »
As soon as I was told post op that the hearing in my left ear was gone I asked my neurotologist about options.  He told me my more immediate goal was getting out of the hospital and then we'd talk  ;D

While I was still in the hospital I was miserable being SSD, so I asked him again the day he released me and he mentioned the Cros and the BAHA.  We discussed them both and I felt the BAHA would be the way to go; he agreed with me and said I could try the demo as soon as my head was "healed" - a somewhat subjective term.

As I recovered, I found that my frustration with being SSD continued and actually grew; bottomline, I hated all the issues that being SSD brought - like not hearing someone talking on my "bad" side, having to position myself in a particular spot at a table in order to hear everyone seated around me, saying "WHAT???" repeatedly, etc.  I tried the BAHA demo 3 1/2 months post op and was amazed by it.  I sat in an exam room with my neurotologist, he had me plug my good ear with my finger, and he quietly talked to me.  I could hear every word!  :o

I decided that I wanted to schedule the implant surgery ASAP, but my insurance company had other ideas.  It should have taken them 4 - 6 weeks to approve my request, but it took them 5 1/2 months.  The day they approved me I felt like a huge black cloud had lifted over my head and I immediately scheduled my surgery.

So, 9 months post op I had the BAHA implant and 3 months after that I was able to start wearing my processor. 

I love my BAHA - I'm still amazed by it on a daily basis.  The surgery was easy (outpatient and I had local anesthesia), the healing was quick (no complications), and the result was incredible.  I've never regretted my decision.

BAHAs aren't for everyone, but I suggest you try the demo and decide for yourself.

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

MNTim

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Re: How soon to address lack of hearing
« Reply #3 on: July 10, 2011, 11:32:23 am »
Jan,

Thank you for your experienced opinion.  Being that I have had so many surgeries and a few complications I am somewhat skiddish about undergoing the knife again.  I read another post yesterday about complications from a BAHA procedure.  I have two scars and very tight skin behind my left ear.  I would definitely ask if that should be a consideration when researching devices.

Rivergirl, I agree I think I hear better than before because I don't have any garbled interference.  However, I would like to have more clarity in sounds coming from my left side.

I don't like what I am missing out on.  I have dealt with limited hearing for at least two years and an inability to hear words for a year on my left side.  I want to be able to participate in conversations when there is background noise.

Tim
8/31/09 hydrocephulus-emergent drain
9/2/09 5 cm AN debulked, Retro Sig Abbott NW
5/18/10 Second debulk, Retro Sig Abbott NW
1/31/11 Translab, 7/12 Graft Mayo Rochester, MN
2/12/11 Lumbar drain
3/14/11 Eustacian tube packing procedure for CSF leak
2/28/13 Platinum weight & Tarsorrhaphy

Paul F

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Re: How soon to address lack of hearing
« Reply #4 on: July 10, 2011, 06:17:02 pm »
MNTim,
Good questions.  When I first became SSD due to a stapendectomy gone bad, I opted to go with a Cros set-up.  At that time, the Cros required a wire to run from the SSD side to the good side and they really never worked real well. I then went for a couple years with just a hearing aid in my "good" ear.  Then I did some study on the BAHA and decided that was the way to go.  After 2 years, the BAHA still did not benefit me one bit.  It seemed to only amplify what I did not want to hear, ie background noise, and drown out what I did want to hear.  I do not know if that was because I wear a hearing aid in the better ear or not.  I suspect it had something to do with it.  I am having my BAHA abutment removed next week.  I have been set up with a new cros system that just came out from Phonak.  It is a small transmitter behind the SSD side and for me, A hearing aid in the better ear.  They are programed to work together and they really do.  I am very impressed with the results.
Long story short, your doing the right thing.  Check out all your options and, if you can, try them out.
Paul

leapyrtwins

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Re: How soon to address lack of hearing
« Reply #5 on: July 10, 2011, 06:28:29 pm »
Tim -

as with everything, there can be issues with BAHA surgery - Jay is a case in point.  But issues aren't the norm.  Most people heal without complications and without infection.  My implant was done a little over 3 years ago and I haven't had an infection yet (knock on wood).

Everyone is different though, and your concerns about scars and tight skin are definitely something you should discuss with your doctor.

I, too, wasn't thrilled with the prospect of another surgery after my AN surgery, but those on this Forum who already had BAHAs (and my doc) assured me that BAHA implant surgery is absolutely nothing like AN surgery - and they weren't telling tales  ;D

As I said before, the BAHA isn't for everyone, but IMO it's definitely something you should check out.

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

Jeanlea

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Re: How soon to address lack of hearing
« Reply #6 on: July 11, 2011, 07:18:57 am »
Tim,

Another option is the TransEar (http://www.transear.com/). It looks like a traditional hearing aid with a part that goes in your ear and a part that goes behind your ear. I chose it because it is not a permanent part of my body. It also works on the bone conduction principle by transferring sound to your good ear. I've had mine for over four years now. In the beginning it didn't seem to do much, but as time has gone on I feel that my brain has adapted to it. It's still not like regular hearing, but I wouldn't go without it anymore. On the few occassions when I've had to go without it for a week or so I really missed it. It's something you seem to notice most when you don't wear 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

Brewers7

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Re: How soon to address lack of hearing
« Reply #7 on: July 11, 2011, 08:44:46 am »
Tim,
     I have had the Transear since December and I agree with Jean.
Susan
Translab surgery 12/15/2008 followed by CSF leakage repair and 3 additional surgeries for MRSA of the brain (NOT typical) SSD,  facial and vocal cord paralysis, numerous reconstructive surgeries, Transear 12/2010