Author Topic: SAw ent today-suggested BAHA need input  (Read 2932 times)

bern

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SAw ent today-suggested BAHA need input
« on: January 20, 2009, 05:20:35 pm »
I had a full battery of hearing test and since gamma knife treatment my hearing is now totally gone in my AN ear.  Doctors suggest BAHA.  That seems extreme to me. i was also given the option to get two hearing aids. My balance is off and I will start vest. rehab.

Pain in my ear is related to a misaligment in my jaw. This is a new problem now!!!

I would like your input on BAHA and since my hearing is all gone, does this mean my tumor is growing, I have an Mri on Monday.-

Sue

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Re: SAw ent today-suggested BAHA need input
« Reply #1 on: January 20, 2009, 09:07:30 pm »
Losing your hearing does not necessarily mean that the tumor has grown.  Your nerves need oxygen and perhaps the tumor has deprived the nerve and it has just lost its functionality.  Most of my usable hearing was gone before I had GK.  One audiologist suggested what I am saying here, to me.

But, I'm sure your doctors will be able to figure it all out for you.  I don't have a BAHA, but several on here do and they seem to like how it works for them.

Sue in Vancouver USA
Sue in Vancouver, USA
 2 cm Left side
Diagnosed 3/13/06 GK 4-18-06
Gamma Knife Center of Oregon
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JerseyGirl2

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Re: SAw ent today-suggested BAHA need input
« Reply #2 on: January 20, 2009, 10:46:25 pm »
Hi, Bern,

I've worn my BAHA Intenso since June and am quite happy with it. You can read about the device at www.cochlearamericas.com, and many audiologists can provide you with a demonstration. When you mention that it sounds extreme, I'm guessing you're referring to the fact that a surgical procedure is required for the titanium implant. I had my implant at the same time as my surgery so I wasn't aware of anything ... but others who've had it some months following their AN treatment report that it's pretty similar to a dental procedure -- not that big of a deal. You mentioned the option of two hearing aids -- that would be the Cros system, and there's also a Trans-Ear device which is quite popular with several people on this forum. Others on the forum have become comfortable with their SSD (single-side deaf) situation and have opted to not get any device at all. Like everything else AN-related, you need to decide what's the best option for YOU!

Best wishes as you continue your research.

Catherine (JerseyGirl2)
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

wendysig

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Re: SAw ent today-suggested BAHA need input
« Reply #3 on: January 21, 2009, 08:04:33 am »
Hi Bern,
Sue is right, that you losing your hearing doesn't mean that  your AN has grown.  As for BAHA, I recently had the surgery (1/5/09).   I understand your reluctance to have surgery, but this really was a piece of cake.  I had the option of either general or local anesthesia -- I chose to have local anesthesia with sedation since this was my doctor's recommendation, but feel I would have also been okay without the sedation.  All that did was make me really relaxed, but I was awake  The surgery itself took around an hour and I was completely  alert within minutes when it was over.  There is not much pain involved and your doc will provide painkillers to manage that, should you decide to have the BAHA surgery.  I only took the painkillers for two days post-op and was fine without anything after that.  As for hearing with the BAHA processor, I had the demo a couple of months before my surgery.  I was 99% sure this was what I wanted and the demo convinced me completelly.  While I feel I will be very happy with my choice, that's what it is, a choice and not for everyone -- you need to do what you will be happiest and most comfortable with.

Best wishes,
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: SAw ent today-suggested BAHA need input
« Reply #4 on: January 22, 2009, 12:20:23 am »
Hi, Bern -

I'm also a BAHA user and I absolutely love mine.  My surgery was in March 2008, so I'm coming up on my first year anniversary.  YEA!!  ;D

As Wendy said, the surgery is extremely easy (outpatient procedure) and I had it with local anesthesia w/o sedation.  I had very minor pain the first day post op, but Tylenol did the trick for me.  My site healed well with no issues and I got my processor 90 days after the implant surgery.  Life has been much better ever since.

I strongly recommend the BAHA demo if you are contemplating the surgery.  I had talked to several forumites about the BAHA prior to my decision to have the implant surgery, but the thing that cemented the decision for me was the demo.  I found it incredible.

For more info on the BAHA - including photos of some of our sites & processors - search on "BAHA".  Or if you have more specific questions, please don't hesitate to post them on this thread or PM me.  I'd be more than happy to answer any and all questions you have.

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

jazzfunkanne

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Re: SAw ent today-suggested BAHA need input
« Reply #5 on: January 22, 2009, 03:22:02 am »
i was at ent yesterday and he also recommended i get the baha, but i really dont want more surgery just now, the transear is another option.
over 4.5cm AN removed dec 06

Richey

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Re: SAw ent today-suggested BAHA need input
« Reply #6 on: January 22, 2009, 07:04:14 pm »
You folks that have used the demo, would you mind describing it. They one I tried just for a little while gave me a splitting headache.

I've been getting by OK with my bi-cross but have wondered if baha would be better

leapyrtwins

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Re: SAw ent today-suggested BAHA need input
« Reply #7 on: January 22, 2009, 09:25:07 pm »
Richey -

although I know some on this forum had a demo to take home and try out, I just had a short trial at my neurotologist's office. 

Basically he put the demo on my head, told me to plug my "good" ear with my finger and then proceeded to talk to me.  I could hear every word he said, which I found truly amazing since I had heard nothing out of my "bad" ear since my AN surgery left me SSD.

I had my BAHA implant surgery in March 2008 and started to wear my processor (Divino) in June.  I have had no headaches - splitting or otherwise - related to my BAHA use.  But everyone is different, so I can't speak for others.  This is only my experience. 

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: SAw ent today-suggested BAHA need input
« Reply #8 on: January 25, 2009, 08:01:56 pm »
Hi Richey,
When I had the demo I was already just about deaf in my right (AN) ear so I didn't bother to stick my finger in it.  My doc put the headband on me and had me close my eyes.  He then walked around the room snapping his fingers and talking to me -- it was amazing I could hear everything and I was sold immediately!   I was 99% sure that this was what I wanted even before the demo.  I didn't get a headache and can't imagine why you did -- I thought the demo was great.  Now that I've had the surgery (1/5/09) I am impatiently waiting for the day I'll be able to use the processor -- hopefully sometime in the first or second week of April   For now I play with my abutment by scratching it or tapping it very lightly and I can hear the noises it makes with my good ear -- another  amazing preview of things to come!

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!