Author Topic: Baha frustration...  (Read 9036 times)

mellowrama

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Baha frustration...
« on: February 13, 2010, 09:29:42 pm »
I'm still waiting for BAHA success after recently getting the device... maybe my expectations were too high.  So far, my head still aches (not from translab, but from Baha post) and the difference in hearing is hardly noticeable. 

Maybe it takes awhile to adjust and fully heal -but I'm still waiting for my head to feel better and don't even lay on that side.  And I'm frustrated with limitations of wearing hats and glasses.

Regarding hearing - I going back to my audiologist to adjust the BAHA device this coming Monday in hopes of it working better, as I still have difficulty hearing someone speaking next to my deaf side, or cannot understand them...and its turned all the way up.

I really hope to not regret getting the additional surgery and device...holding out for better results.
m
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

lawmama

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Re: Baha frustration...
« Reply #1 on: February 14, 2010, 07:17:10 am »
m,

Sorry to hear that you are having problems with your Baha.  I really hope that the adjustments will make it work better for you. 

Lyn
9mm X 7mm tumor (left side), diagnosed 10-15-09
Retrosigmoid on 12-14-09 by Drs. Antonelli and Lewis (my heroes!)
Shands in Gainesville, FL
SSD, but no facial issues.  Mild tinnitus.

tenai98

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Re: Baha frustration...
« Reply #2 on: February 14, 2010, 07:31:13 am »
Hi
I've had my BAHA now for 12 days. And yes there was no WOW factor when it was turned on. Because I gradually lost my hearing over time and then completely with the surgery, I was/am use to being SSD. When the device was activated, (I'm demoing the divino til friday then the intenso) there was no difference in hearing. But when I plugged up my good ear, WOW, I could hear. Now I dont think the divino is for me as I'm somewhat impaired in my good ear and will most likely go with the intenso. But try plugging up your good ear and 'hear' the difference....it really does work...My ENT had me wait 4 months before giving me the unit.  He was going to make me wait 6 months but seeing I'm a fast healer, we went with 4..
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

leapyrtwins

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Re: Baha frustration...
« Reply #3 on: February 14, 2010, 04:15:13 pm »
m -

why can't you wear glasses?  I wear sunglasses and regular eye glasses daily while my Divino is on my head.

I'm still waiting on my BP100 - it's still on backorder, which is really ticking me off - so I can't relate to what you're going through.  In the meantime, my Divino works well.

Hope things get better very soon.

Keep the faith.  The BAHA is worth it despite the issues you are currently having.

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

Kencutus

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Re: Baha frustration...
« Reply #4 on: February 14, 2010, 06:40:52 pm »
I can wear my glasses with my BAHA.  They had to shorten the temporal frame to make it fit right.  I only have partial outer ears on both side and both of my Baha abutments rests about half an inch behind both ears.  Wish I could help ya but I have a pair of Intenso.
« Last Edit: February 14, 2010, 07:20:54 pm by Kencutus »
"Hearing Resistance is Futile!"
Treacher Collin's Syndrome
First surgery left side 12-08, Baha Intenso 3-09
Abbutment came loose on 5-09
Bilateral Baha surgery 6-09 Baha refitted 9-09
Richard & Mark Wiet MD from Ear Institute of Chicago.

tenai98

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Re: Baha frustration...
« Reply #5 on: February 14, 2010, 07:01:31 pm »
I have no problems wearing my glasses or sunglasses...but  I have yet to try a hat...which I know I wont be able to wear...no big deal really cuz I am not wearing my device while fishing or hunting. If I really need one for the sun, I suppose I can wear one lopsided on my head....
JO
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

JerseyGirl2

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Re: Baha frustration...
« Reply #6 on: February 14, 2010, 08:10:55 pm »
I wear glasses/sunglasses when I have on my Intenso and haven't had any problems. Hats are a different story however! I just added jackets, sweaters, and coats with hoods to my wardrobe and manage that way. If I really need to wear a hat -- when I'm shovelling snow, for example -- I just don't wear my BAHA.

Hope your audiologist can make an adjustment to your BAHA if that's indeed the problem. I don't recall whether you had suffered any hearing loss prior to your AN surgery, or whether you had "sudden-onset" single-side deafness as a result of your surgery. Usually those folks who get their BAHAs relatively soon after becoming SSD notice the most dramatic results -- their brains haven't had a chance to adapt to SSD. Those of us who experienced a very gradual hearing loss prior to AN surgery and, in many cases, were virtually SSD already, don't always have that "Wow" moment when they attach the sound processor for the first time.

At any rate, please don't give up on your BAHA -- give it time.  Even a subtle improvement is still an improvement.

Catherine (JerseyGirl 2)

Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Arasha

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Re: Baha frustration...
« Reply #7 on: February 15, 2010, 12:42:34 pm »

I'm frustrated with limitations of wearing hats and glasses.


Just curious, what make Baha users to be unable to wear hats?. Is it painfull, discomfort, feedback?  I read a lots of "I love my Baha" that I was starting to think that there are not any CONS.  Does it get better with time? I am a runner six days a week, one of my inevitable things to wear is my hat. If I get the Baha device, does it mean that I can not wear it while running?.

Gloria 
Left side AN 2.5x1.8 removed on 10/17/2007 endosc. by Dr.Shahinian (retrosig) at SBI, LA,Ca. Facial phalsys (almost back). Balance issues. Tinnitus. MRI 8 months later showed AN was resected completelly.TransEar 11/2008. Clinical trial for SoundBite 11/2009. SoundBite user.I have the best family.

Sefra22

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Re: Baha frustration...
« Reply #8 on: February 15, 2010, 01:00:20 pm »
Hi Mellowrama,

It took me quite a few months (and trips to the audiologist) before I was happy with my BAHA. I was the first person in my state to get the BP100, so my audiologist was doing her training on me. My best suggestion is to keep track of what kinds of issues you are having and when. (Such as when it's windy, when you are exposed to beeps/alarms, hats, etc.) This way you audiologist will be better able to program to fit your needs.

This is a great link to some of the questions you have:

http://www.cochlear.co.uk/Support/2236.asp


Lisa
Lisa from Portland, Maine age 46
Diagnosed June 2006
15mm X 17mm AN right side 80% hearing loss
GK March 14,2007 Dr. Noren, Providence RI
1 Year follow-up MRI shows "slight shrinkage".
2 Year follow-up MRI shows "No Change".
3 Year follow-up MRI "stable".
BAHA surgery 4-22-09 BP100 Sept. 2009

lori67

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Re: Baha frustration...
« Reply #9 on: February 15, 2010, 02:27:37 pm »
I have one pair of sunglasses that I can't wear when I have my BAHA on because the way the arm is shaped (I don't know what the technical term is for that part of the glasses  ???).  I have to wear glasses that curve around the back of my ear more rather than the kind that is just sortof straight.  Otherwise, it's too close to the microphones and I get feedback.

As far as a hat, I haven't actually tried to wear one when I had my BAHA on.  Usually if I wear a hat it's because it's snowing, in which case I wouldn't want my BAHA to get wet so I wouldn't have it on, I'm at the beach and I don't want to get sand or water in it or I'm on my way to drop the kids off at school bright and early and don't want anyone to notice how bad my hair looks.  In that case, I wouldn't put myself in the position to have to talk to or hear anyone anyway!   :D

M - don't get discouraged.  I'm sure once the pain is gone on that side of your head and you figure out a way to deal with sunglasses, hats and other accessories like I did, you'll be glad you got your BAHA.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

mellowrama

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Re: Baha frustration...
« Reply #10 on: February 15, 2010, 08:31:04 pm »
Hi all,
thanks for your feedback.

I went to my audiologist doc this morning - she programmed the BAHA (BP100) so that the volume was higher and I'll be testing it now.  She concurred with my thoughts - there is not much adjusting to be done (for me) other than raising the volume, however, that will cause more feeback and increase the background sounds too...hopefully my brain will adjust more so that hearing will be better. 

I wore it all day today, I think my hearing was a bit better, but it was also much louder with feedback noise.  One of my friends hugged me and touched upon it accidentally, which I did not notice at all (guess I'm getting used to the odd sounds) but it startled her.  Later today, I took it off as I think the top of the device might be rubbing slightly on my head and irritating it. Starting to wonder if much of my soreness issues are related to the placement of the abutment, feels puffy above the post...

My hearing was almost perfect prior to translab around Sept 1....so I don't think the delay has been that long...
I cannot wear hats, or any of the glasses i currently own, without bending the stems or breaking them off short because they interfere with the BAHA or in some cases hurt my head near incision areas...I anticipate this getting somewhat better over time but will also have to keep an eye out for a new style.
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

Sam Rush

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Re: Baha frustration...
« Reply #11 on: February 16, 2010, 11:35:07 am »
When I first got my BAHA, I was very frustrated like you, didn't notice any difference, still wore it for 3 months, then tried someone else's BAHA and realized that mine Never Worked !!!  Had it replaced free from Cochlear and worked fine since. Have yours tested or try someone else's.

Good luck
1 cm AN translab, Dr. Brackmann, Dr. Schwartz, Dr Doherety HEI   11/04   Baha 7/05

mellowrama

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Re: Baha frustration...
« Reply #12 on: February 25, 2010, 03:03:16 pm »
I had the BAHA inplant n Nov 2 and started wearing the device mid Jan ...I've not been wearing for the last week so that I can that if my head is still healing it has time, and to see if I notice a difference hearing with it on...it does seem to be a little better but not what it should be. :-\

I've been having problems with pain and sensitivity above the post primarily - it seems as though the post doesn't stick up above my head/hair, or maybe my head/skin is swollen above the post.  The short new growth hair may be a factor  -it seems that maybe the post is not located where there is now no hair due to the surgery, and that hair is growing close to and above the abutment and getting vibrations which by the end of the day makes my head very sore in that area.  So sore, that I've been avoiding wearing the BAHA.
 
I was going to attache an image for hair but can't figure out how to do it...
I'm wondering if the surgeon placed the abutment in the wrong area...not sure what can be done, or what to do...
Ideas? thanks,melinda
22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011

Kencutus

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Re: Baha frustration...
« Reply #13 on: February 25, 2010, 07:14:18 pm »
Posting pictures is easy.  You need to open an account with www.photobucket.com and upload your pictures from your PC to there.  Once you get established,  All you really have to do is to copy and paste the link with [IMG] tags of your picture and paste it here. 

On the other note, can you describe where did the doctor put the abutment on your head?  Like how far from the ear and so on?
"Hearing Resistance is Futile!"
Treacher Collin's Syndrome
First surgery left side 12-08, Baha Intenso 3-09
Abbutment came loose on 5-09
Bilateral Baha surgery 6-09 Baha refitted 9-09
Richard & Mark Wiet MD from Ear Institute of Chicago.

mellowrama

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Re: Baha frustration...
« Reply #14 on: February 25, 2010, 11:16:26 pm »
Thanks Kencutus,

here is the picture of the abutment.  The doctor intentionally placed it a little high too avoid the surgery area from recent translab...
when I compare it to other pictures, there seems to be way too much hair around the post.

22mm x 19mm x 12mm CyberKnife  9/25/2006 BNI Dr. Daspit/Dr. Smith/Dr. Brachman
Failed radiation - regrowth to 2.6cm 
Translab Surgery w/ House Docs 8/26/2009 Dr. Friedman, Dr. Schwartz, SSD, tinnitus. 
Baha surgery with Dr. Baker in OKC nov 2009
Baha revision surgery by Dr. Horn in ABQ 8/2011