Author Topic: I want a Baha. NOW!  (Read 21498 times)

lawmama

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I want a Baha. NOW!
« on: February 13, 2010, 08:47:31 am »
Am I being reasonable?  My ENT seems to want me to try other types of hearing devices before I go for something permanent, but my insurance won't pay for them, I cannot afford them on a student budget, AND I'm pretty certain that I will eventually want a Baha anyway.  Why wait?  I don't want a visible hearing aid, and from what I understand the quality of sound is superior with a Baha.  I've done my research.  I want a Baha!  Do you think I am rushing this? 

I am surprised at how much being SSD has caused problems in my life.  I can hear during lecture fine because it is only the Professor speaking, but if someone in class asks a question I can't tell where it is coming from (the lecture halls are large).  Also, my social life is almost nil because of this.  I attended a banquet a few weeks ago and it was a miserable experience.  Beside the fact that I couldn't hear the person on my left when he was speaking to me at dinner, during the cocktail hour the chatter and noise from the room wiped out my hearing and I ended up just nodding and smiling instead of making everyone yell at me.  I'm already sick of this and I don't see why I need to wait and be miserable any longer before I do something about it. 

I have an appointment on the 22nd of this month and I'm planning on marching in an demanding a Baha.  I don't see why I should wait.  This is what I want.  I have educated myself about the various options.  Why wait?  So, I ask again, am I being reasonable? 

Sorry about the rant.  I'm just frustrated, I suppose.  Honest opinions!

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: I want a Baha. NOW!
« Reply #1 on: February 13, 2010, 09:17:37 am »
hi Lyn
My ENT also made me try out the bi cros hearing aid whch I didnt like. My insurance does pay for conventional hearing aids but does the BAHA...I just insisted on the BAHA...I did try the cros but got my BAHA instead...
I would demand the BAHA...its what YOU want not what the ENT wants...
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: I want a Baha. NOW!
« Reply #2 on: February 13, 2010, 09:57:07 am »
Lyn -

chances are your ENT has never worn a BAHA - or any other type of hearing "device" for that matter - so I personally don't think he/she has the right to tell you what you should do.  Suggestions are one thing, but it's your hearing and your decision.

Does your ENT do BAHA implants?  Any doctor I've ever talked to who does them has told me that their patients love the BAHA.  My doc has done over 250 implants and he told me only 1 person decided after the fact that it wasn't for her.  That speaks volumes in my mind.

I was miserable prior to getting my BAHA - I found it very hard to adjust to being SSD - and it sounds like you feel the same way.  Although some people don't experience this, those who do should definitely do something about it.

I regret I didn't get the BAHA sooner (had my surgery 9 months post op because I was waiting on insurance approval) and I don't think you should wait.

However, it's important to remember that while the BAHA is a huge help, it is NOT like your normal hearing was.  Don't set your expectations too high.

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

lawmama

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Re: I want a Baha. NOW!
« Reply #3 on: February 13, 2010, 01:39:30 pm »
Thanks for the replies.

Jan, good point about not getting my hopes too high.  Honestly, any improvement would be very welcome.  My main concern is that I have something that doesn't show too much (that I can camouflage) and something that allows me to operate normally in my daily life.  I just don't think I would be happy with an over-the-ear hearing aid.  I know that is a fantastic option for thousands of people, but I think for my own life and my needs a Baha would work better for me.

Yes, my ENT does Bahas.  I don't think he is hesitant because of the Baha itself, I think he just wanted me to heal and think about it carefully before I made a decision.  I'm pretty much all healed.  And I've thought about it.  I still want it!

Jo, thanks for sharing your personal experience.  I really believe he will be more than happy to let me do this when I show him that I have done the research and this is an educated and carefully thought out decision.  I am the type of person that very carefully considers decisions before I make them, but it doesn't take me long to do it.  I do a ton of research and then pull the trigger, so to speak.  :D

Thanks again.  I will let you all know how it goes after the 22nd.

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.

ombrerose4

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Re: I want a Baha. NOW!
« Reply #4 on: February 13, 2010, 01:55:04 pm »
Hi, I agree that you should demand the BAHA if that's what you want. I had my BAHA surgery in January and I am counting down the days till I get to use it. I go to school also, so I understand how you feel. Sometimes I feel like I am being rude cause I can't hear and reply to what people are saying. And in social situations I feel completely shut out on my SSD side. And I can't take part in discussions because I sit right in front of the professor but can't hear behind me. So stick to your guns and get the BAHA. I found the demo (tried it twice) amazing! Let us know how it goes.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

Jim Scott

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Re: I want a Baha. NOW!
« Reply #5 on: February 13, 2010, 02:17:10 pm »
Lyn ~

As I see it, your ENT doesn't make the final decision on this, you do.  So, to answer your question, yes, you're being reasonable.  I wish you complete success in your quest for better hearing through modern technology.:)

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.

Kencutus

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Re: I want a Baha. NOW!
« Reply #6 on: February 13, 2010, 03:14:49 pm »
I say "Go for it!"  If that' what you want, go for it!  No one should deny you from getting what you want.  I fought for 4 years with my insurance company and won!  I would not take "No" for an answer.  It's the best investment I ever made and I don't regret it.  ;)
"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.

leapyrtwins

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Re: I want a Baha. NOW!
« Reply #7 on: February 14, 2010, 04:20:40 pm »
Don't get me wrong, the BAHA is incredible - my thoughts are similar to Ken's in that area; it's one of the best investments I ever made.

You just don't want to get into the mind set that the BAHA will give you back your normal hearing, because as wonderful as it is, it won't.

Dr. Sam (Sam Rush) cautioned me about this before I got my BAHA and I'm thankful he did.  I found the demo phenomenal but I also was aware of the BAHA's limitations.

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

lori67

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Re: I want a Baha. NOW!
« Reply #8 on: February 15, 2010, 02:37:48 pm »
Jan brings up a very important point.

While I am all for a BAHA (obviously, since I have one!), you have to expect that it has limitations.

Chances are, you will still not be able to tell who is talking in the lecture hall because for most people, it will not restore directionality.  My doctor told me that for some it does - for me, not so much.  The good thing though, is that you may be able to hear the person better in the first place, even if you can't figure out where they are sitting.  As far as banquets - I always have to turn mine off when it gets really loud. All it does, like most aids, is amplify the noise.  I understand the BP100 might be better at filtering out the unwanted noise, but I don't have any experience with it, so I'm not sure.  I do find it helps at a dinner table, as long as it's not too noisy in the room to begin with.  I am able to hear the person on my deaf side.  I can't always hear everything said, but usually enough that I can follow along with the conversation.

As long as you go into it with reasonable expectations I don't think you'd be disappointed.

So, you're the consumer - tell your doctor that's what you want.

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.

Denise S

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Re: I want a Baha. NOW!
« Reply #9 on: February 16, 2010, 08:53:06 pm »
Curious what other options he thinks you should try (spend your money on) first?  To my knowledge for our type of SSD is only the CROS, BAHA, and newer TRANSEAR.

I mainly ask because at my 3 month post op yesterday my neurotologist set me up with more info., etc. for the BAHA.   At Michigan Ear Institute they have had great results with the device itself.    The when meeting with the audiologist about it (they fit me in while there because they are about 3 1/2 hr. away), she too said it would be the very best recommended over CROS due to being younger.  (they haven't done any Transear yet, just got info. and updates last month).

Have to say too though....both said the same as someone previous that the sooner you get it, the easier it is for your brain to readjust because it hasn't been totally readjusted to the SSD for a long time.       

I have to say I wear glasses, and never thought of that issue.  BUT, I seen one person's picture on Facebook that looked like her abutment was way, way behind her ear......more toward the middle of her back of her skull.  Now that looks way uncomfortable.

Since it is such a time consuming process, at least insist they start the paper work.   


W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

leapyrtwins

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Re: I want a Baha. NOW!
« Reply #10 on: February 17, 2010, 08:10:01 pm »
I have to say I wear glasses, and never thought of that issue.  BUT, I seen one person's picture on Facebook that looked like her abutment was way, way behind her ear......more toward the middle of her back of her skull.  Now that looks way uncomfortable.

Denise -

wearing glasses and a BAHA generally isn't an issue.  As I mentioned earlier, I wear both sunglasses (on a daily basis) and eye glasses (occasionally) and neither interfere with my ability to wear my Divino.

Placement of the BAHA abutment is generally behind the ear, but if the surgeon finds that the skull in that area isn't "sufficient" he/she may place the abutment further back on the skull.  Although this is kind of like the exception to the rule, my good friend Lori (lori67) has such a placement.

Here's one of my favorite BAHA links; you might find it helpful.  http://www.umm.edu/otolaryngology/baha.htm   It gives a nice view of the usual placement.

You should also check out www.cochlearamericas.com and the Cochlear Community - lots of good information there on both BAHAs and Cochlear Implants.

There's a BAHA user's support group http://www.baha-users-support.com/cgi-bin/2bb/2bb.cgi that has a lot of very useful information, too.

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

Denise S

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Re: I want a Baha. NOW!
« Reply #11 on: February 17, 2010, 08:51:49 pm »
Jan, thanks for the extra sites to visit.

I am actually overwhelmed at how great the Cochlear people are.   I got some info. from audiologist, but e-mailed via that website last night and got 2 posts back today with additional info. and they will be mailing me stuff.   They also pointed me in the direction to find the listings of who all in Michigan deals with BAHA.   Seems like that is most of what I did today was research on that, and updated my blog about it too.

I will BE SURE to add those other sites to check out, thanks again!
W&W 2 yrs. (due to watching other brain tumor: it's stable)
Left AN:  1.2 cm (kept growing during 2 yr.)MIDDLE FOSSA  11/9/09;  Michigan Ear Institute Dr. Zappia & Pieper
SSD, mild tinnitus, delayed onset of facial paralysis lasting 3-4 weeks, no tears AN side
BAHA surgery 10/2/12 Dr Daniels G.R.,MI

Mei Mei

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Re: I want a Baha. NOW!
« Reply #12 on: February 18, 2010, 11:38:47 am »
From a practical viewpoint and looking at these pictures, do you feel comfortable shampooing with the BAHA in place?  Is it at risk for falling out or damage or site infection?

Mei Mei
1 cm Tumor RetrosigmoidSurgery on Jan 12 at Johns Hopkins
Drs. Niparko and Tamargo
35dB loss pre surgery and now SSD
Post surgical Headaches and Tinnitus
Dr Ducic Georgetown Excision Surgery May 2011
Dr. Schwartz GW  Titanium Mesh  March 2012
Drs Kalhorn/Baker, Georgetown Removal of Titanium Mesh

tenai98

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Re: I want a Baha. NOW!
« Reply #13 on: February 18, 2010, 11:50:37 am »
the BAHA is removed before shampooing your hair....or for any physical activity....I wont be wearing mine fishing or atving.
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: I want a Baha. NOW!
« Reply #14 on: February 18, 2010, 06:21:25 pm »
Mei Mei -

I'm not sure if you are wondering about shampooing with the device (tiny hearing aid) attached to the head or not.

As Jo said, you would remove the device.  It's quite costly and in addition, isn't waterproof - at least not waterproof enough to be drenched in a shower, swimming pool, or downpour.

The titanium abutment calcifies to the skull - usually within 90 days post op - and it's in there "for good".  There are rare cases of the abutment coming out of the skull, but it generally doesn't happen.  I once read that if you want to remove the abutment by any means other than surgical, you'd have to actually remove the piece of skull that it's calcified to.

The abutment isn't uncomfortable at all and in my case it's become just another part of me.  I don't think about it on a daily basis.  It only sticks up from the skull about 1/8" - if that.  Immediately post op it sticks up a little more, but it "sinks" in a few days or weeks. 

Infections can happen, most often while the site is healing post op, but they are usually treated pretty easily and pretty quickly.

I'll have my BAHA implant for 2 years on 3/4/10 and haven't had any infections or problems with it whatsoever.

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