Hi I'm new! Anyone with SSD and a BAHA?

AngelinaPastina

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Hi - I'm 25 and have been deaf in my left ear since birth. I am interested in the BAHA system and was wondering if anyone could help me out with some more info. Any help would be appreciated - thanks!
 
Hello and welcome to Alldeaf Angelina Pastin! You'll find useful and helpful ideas, tools in your quest for more information that you're looking for in here...enjoy your stay! :)
 
Hi, I haven't heard anyone with BAHA on this website, but I hope there are.:D

I was looking through the SHHH magazine and saw that BAHA is also used for single sided deafness (SSD) I thought that was interesting. There's the website on their ad http://www.entific.com if you haven't seen it.

I wish you the best success with the BAHA if you decide to pursue it :). Can I ask why you are interested in the BAHA? Is it because of difficultiy in noisy situation?

Later.
 
I have SSD too. I am profoundly deaf in my right ear with zero residual hearing, and have normal hearing in my left ear. I am planning to get a BAHA as soon as I can afford it. The House Ear Institute in Los Angeles used to have an excellent .pdf file on their web site about BAHAs, but removed it for some reason. I’ll see if I have a copy somewhere on my hard drive.
 
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Hi - thank's for responding. I have been on the Entific website (thank you!) and I have chatted with BAHA users. I'm pretty sure I'm going to pursue this but was interested in a little more info since most of the people I've spoken to are in the UK. Price is an issue as well.
Though I feel incredibly lucky to have the hearing I do have, it does cause me many problems that you would never think of. Noisy situations are definately the worst. All of the sounds run together and people just don't understand that I can't separate the noises. Someone could be yelling over the noise directly into my good ear and I won't hear them. Since I don't have a speech impairment and don't appear to have a hearing problem (in certain situations) and don't wear a hearing aid, people don't realize that I do have a problem. They just think I'm rude or joking when I keep saying - what? I have no localization ability so when someone calls my name I usually go in the wrong direction looking for them. When a sound is on my left I can't hear it unless it is either very quiet or someone yelling. I become - the only way I can describe it is confused when there is more than one sound. Restaurants, stores, work, anywhere that there's more than one sound is highly stressful.
There's a lot more to it and it's hard to describe most of it but mainly it's always been my dream to be more confident and not afraid and nervous all of the time. You only live once and why not be as happy as possible? If this works, it will change my life in amazing ways.

Well, I'm sorry to ramble and thank you for asking (I'll be you're sorry you did! haha!).

Angelina Pastina
 
Thank you Levonian! What have you heard about cost? I've heard everything from $875 to $5,000 for the procedure! Big difference. I know the processor is approx $2,500 and am not sure about all of the appointments and tests, follow ups, etc. I don't have insurance but apparently it's not covered anyway. Hopefully we can help each other a little. I've been doing alot of research. I guess your in CA - I'm in FL. Nice to meet you all!
 
I understand everything you’re saying—you just described me perfectly. :thumb: People just don’t f**king get it because we don’t have a ‘deaf voice’ or any of the other telltale signs that bilaterally deaf people have. Maybe we should wear fake hearing aids to make ourselves more credible. :lol: (By the way, did you know that Rob Lowe has SSD? Take a look next time you see him on TV—when he’s talking to somebody else, that person is always on his left).

The BAHA device is not going to give you normal bilateral hearing, of course. But it should help immensely with the head shadow effect. Also, there is unfortunately no improvement in sound localization with the BAHA. There is some new evidence, however, that some BAHA users acquire the ability to hear stereo separation. I’ll see if I can find a reference on that.
 
Angelina Pastin said:
What have you heard about cost? I've heard everything from $875 to $5,000 for the procedure! Big difference.

I’d sure like to know who quoted you that $875 price. :-o My preliminary investigations showed that the total price with post-op follow ups and all the other ancillary crap they force you to pay for was in the $12,000 range. I’ll see if I can dredge up more info on this.
 
I never knew that about Rob Lowe! Interesting. Anyway, I'm so glad to talk to someone who gets it - I've never met anyone with SSD! I just found out 3 days ago that it was CALLED SSD! Haha!

I've heard from people who had normal hearing and became SSD later in life that you CAN hear stero - or at least something very close to it. They would know I guess. Have you had SSD your whole life? I've also read that there is some improvement with localization but it takes practice. But I think the only reason for that is the sound that comes through your bone doesn't sound the same as sound coming through your ear so you learn to distiguish at least which side the sound is coming from at first and eventually you can learn better (of course not great) localization.

My estimate with the cost was also somewhere between 10 and 15k. I'm going to call Jackson Memorial tomorrow and try to get some sort of general estimate. There's not much info out there. I've also found 3 different sets of dimensions for the processor! This has been used in the UK since 1977! Unbelievable. I found out about it three days ago. Have you been to patients-baha.com? It's a UK site but has a great forum, lots of info and pictures. They don't know anything about price of course becuase it's all free for them - including the batteries! But they all either have BAHAs or are going to get them. Some people have 2 of them. You can find my postings under the "get your questions answered" section. I'm Angelina Pastina there too. I have asked them every question I can think of becuase the whole thing is pretty scary and very surreal.

Well, I hope to talk to you soon or see you on the other site. I'll be sure to provide you with any other info I find out that may be helpful.
 
Excellent—thanks. I’d like to get as much info as I can before I approach the House Ear Institute.

I was born with bilateral hearing. I had meningitis when I was five years old.

SSD is more of a pain in the ass than most people realize. Here’s something ironic for you to chew on—my wife is profoundly deaf and has a CI. Sometimes, she is able to understand speech in a noisy environment BETTER than I can, because she’s an excellent speechreader. You and I weren’t taught to speechread—nobody thought it was necessary. A couple of weeks ago we went to a huge Deaf trade show here in Los Angeles. She was able to carry on conversations in the noisy convention hall when I was totally clueless as to what was being said. Sometimes I think that having one ear is worse than having none.
 
Wow - that is amazing! Most people are being supportive of my decision but some people (like my fiancee) don't want me to get it done. I keep telling him that he doesn't understand because he can hear just fine. It has to be pretty bad for me if I'm willing to shave part of my head, have a screw sticking out surround by a bald spot and a plastic box attached!!

It's funny what you said about speech reading. I've been e-mailing a woman in Delaware whose son (9 yrs old) got BAHA and she said her son was an excellent lip reader. I never even THOUGHT of learning - though now I realize how much easier my life would be if I could! She also went through all kinds of hell trying to get him some sort of audio system at school. When I was little I was treated no differently and left to struggle through as best I could. It was never an issue, it was just there. I guess that's good though - I adapted fairly well and turned out alright - though a little anti-social and shy. Well, here is a transcript that I found on CNN that might interest you. This woman only had SSD briefly so it's interesting to hear her point of view after she got the BAHA:

Well, place a hand over one ear and listen to the changes in your hearing. Imagine going through life that way. Did you know every year 60,000 Americans are diagnosed with SSD, single-sided deafness. Nancy Bonnett had it, but she's now regained full hearing in both ears and she's here to tell her story.

Good morning to you, Nancy.

NANCY BONNETT, REGAINED HEARING FROM SINGLE-SIDED DEAFNESS: Good morning to you.

GRIFFIN: I was shocked, 60,000 people a year are diagnosed with this. What does it feel like, and how did you get it?

BONNETT: Well, I had no idea of the dramatic changes that would come with the single-sided deafness. I was diagnosed in May of 2002 with an acoustic neuroma, which is actually a benign brain tumor that arises from the hearing nerve, or the acoustic nerve. And as a result, I needed surgery. And due to the size of my tumor, I would lose my hearing in my right ear. My surgeon was fantastic and tried to prepare me for this. But I had no idea the dramatic changes that would occur in all aspects of my life.

GRIFFIN: Changes like?

BONNETT: Well, personally you can see from the tape that I'm the mother of three small children. And I think most would agree that raising three children is difficult enough with two ears. So trying to do that with one ear certainly lends itself to significant fear of when I miss a cry, if they needed something. Professionally, I'm a nurse. I'm a registered nurse, and I work as a clinical nurse specialist. So I do a lot of speaking and a lot of lecturing, which for a single-sided deaf patient is very difficult; because we lose what's referred to as localization, or the ability to know where the sound is coming from.

And socially, I lost all confidence. I didn't want to go to a crowded restaurant or to a party, anywhere where there would be a lot of background noise, because I couldn't filter out the noise and hear the person standing right in front of me.

GRIFFIN: It also makes it difficult to drive, I'm told?

BONNETT: Oh, definitely, definitely.

GRIFFIN: Now you got it from a surgery. Other people have gotten this from viral infections. How did you get over it, or what was the treatment that allowed you this weekend to listen to the fireworks and the symphony playing along, right?

BONNETT: Yes, it was tremendous. Basically I had -- there are options available for single-sided deafness. But the conventional hearing aid does not work for this type of deafness. So I had gone out and researched a new sound processor that I had heard was recently approved by the FDA known as a BAHA, or bone-anchored hearing device. And I think you're seeing a picture of that now. I was able to try a simulator and actually stand in a crowded conference hall which historically had been a poor hearing environment for me, and my husband stood at my bad ear and whispered to me. And I heard every word.

And I said to him, we need to get this. And I was able to find a surgeon within my home state who would implant the device in the health care system that I'm employed in. So everything seemed to work out. And then there was a three-month waiting period. The way it actually works is, a titanium screw is actually implanted into my skull. And I know that sounds weird, but it does work out OK.

GRIFFIN: Sounds painful.

BONNETT: It really was not. And there's a three-month waiting period as the bone then heals around the screw. We call that osteointegration. After the three-month waiting period, the sound processor is attached. And the sound comes in through the sound processor and uses the bone, or the skull, to conduct the sound, as a normal functioning ear would. So I hear slightly differently through my right ear, but the key word there is, I do hear.

GRIFFIN: And your message to people who are suffering through this and probably saying, oh, I just lost that ear, I'm just going to deal with it, is to get...

BONNETT: Oh, there are definitely options. There are options out there, as a patient with personal experience as well as a nurse, I'll tell you that you need to have a strong relationship, a close relationship with your primary medical doctor to discuss the options and to be able to filter through and decide what is the best way for you. For me, the BAHA has opened up doors that I thought were once closed after my surgery.

GRIFFIN: Nancy Bonnet, we thank you for joining us. And hearing us with both ears this morning.

BONNETT: Oh, it's great. Thank you.

GRIFFIN: Take care. We'll be back after this.


Have a good day!
 
Well Angelina, good luck with everything. I have a cochlear implant myself, and I can understand the difficulty in noisy situations. A CI can sometimes not help that, but you know...I only have it in one ear. I am wanting to try a better hearing aid on the other side to see if that helps even minimally :D. Some people say it might help a little. A little is better than nothing after all. Like you, I can't localize sounds. I look in the wrong direction, and yes, sometimes lipreading makes it a little better. You should take some classes or find videos to do at home. There are people that might think that I am rude when I don't hear them calling me or saying something. Whatever!

Have you tried to have your fiance wear an earplug in one ear for one day? Perpaps, he need a wake up call! lol People don't realize until they experience what it's like to feel the way we do that normally the population does not have.

I am glad there are things out there to help people. It seriously can affect us in small or big ways. I would rather do something about it, than suffer or adapt when there's something out there that could help.
 
I am wanting to try a better hearing aid on the other side to see if that helps even minimally . Some people say it might help a little.
Many people do wear both CI and an aid. Were you a good hearing aid user? If so, it sounds like you'd benifit from biurnal amplification.
As for localizing sounds, I'm bilateral for aids, and still cannot localize sounds worth shit!
 
Yes, I was a good hearing aid user. I think there are many more hearing aids I could try, which is why I am wanting to search out for one :D. I also want my other side stimulated and not dead.
 
Yes, I was a good hearing aid user. I think there are many more hearing aids I could try, which is why I am wanting to search out for one . I also want my other side stimulated and not dead.
Did you hear a significent percentage of what was said? I'd definitly go for it then! Try the Oticon and Phonak aids....they are DAMN amazing! I have Phonak Pico-Fortes (just analog) and I went to a theatre with really crappy acoustics and could hear wicked well!
 
TiaraPrincess said:
Have you tried to have your fiance wear an earplug in one ear for one day? Perpaps, he need a wake up call! lol People don't realize until they experience what it's like to feel the way we do that normally the population does not have.

That is a GREAT idea! I never thought of that. I wonder if he'd go along with it - worth a shot!
 
TiaraPrincess said:
I am glad there are things out there to help people. It seriously can affect us in small or big ways. I would rather do something about it, than suffer or adapt when there's something out there that could help.

It's nice to meet people who understand. A couple people I know (all normal hearing) think I'm nuts for even considering doing this when I can already hear. Like you said, why suffer and adapt when your problem can be improved? Well, best of luck with your HA search. I don't know much about them since I've never been able to use one but I've read that the new digital ones are amazing. Even a small improvement is better than none at all - go for it.

"That which does not kill us makes us stronger"
 
deafdyke said:
Did you hear a significent percentage of what was said? I'd definitly go for it then! Try the Oticon and Phonak aids....they are DAMN amazing! I have Phonak Pico-Fortes (just analog) and I went to a theatre with really crappy acoustics and could hear wicked well!

I heard voices and a good deal mild in the low frequencies with HA, but the highs frequencies are so bad. They keep saying Oticons and Phonaks are really good which I am keeping in mind to try them! :D

Angelina,

Let us know what your fiance decides to do. I'd love to hear his opinion. My high school ASL class had their students cover their eyes and ears as if being deaf and blind and walk around the school. It's a good experience! :D I thought that if your ear does not work on one side, then what else do you have to lose? Go for it! :)
 
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