Hearing aid

[Guest guest]

You know, it was actually quite funny (and relief). When I was able to see him I started chattering away like I usually do and then I said to the nurse, "oh ya, he can't hear me" and very quietly, Larry said, "yes I can". It was great. What you are going through is extremely difficult, but you will get through it. It's hard to believe, but Larry and I can occasionally laugh about all this (maybe we are losing it......LOL).

Take care, Michele

lag4302 wrote:

Michele, I sure bet your husband was so relieved to be able to hear out of that ear after his surgery. My doctor told me it is not likely I will be able to hear out of my left, indefinetly. My right ear isn't great either, in the future I may end up having to have surgery on that ear so I can really relate to your husbands fears. No one wants to be completely deaf. A little bit of hearing sure beats no hearing at all. But the fear is still there. I guess time will only tell and I certainly believe in Miracles. My insurance plan covers one hearing aid. Maybe I can catch all of you on messenger sometime. This site has really helped me alot. It is hard to talk to people who can't relate.

[Guest guest]

Hi Carnetha,

I wear a hearing aid in each ear due to c-toma related hearing loss. In early August, I had surgery for a BAHA ( Bone Anchor Hearing Aid ). My doctor recommended this type of hearing aid since my hearing loss is conductive. I hear fairly well with the "regular" aids but the BAHA will enable me to hear even better.

Ilona

beaut42004 <carnetham@...> wrote:

Hi group,I had a radical mastoidectomy a few years ago and now my ENT suggests a hearing aid. I would like to know if anyone has used one for cholesteatoma related hearing loss, and what kind of experiences you had. ThanksCarnetha

[Guest guest]

Carnetha:

I had a radical mastoidectomy at the age of 7 (now I'm 33). I had, at age 18) a bone-anchored hearing aid. Since I'm missing the three bones and eardrum, the only way to get sound to my inner ear is through bone conduction. Your skull is the best conductor of sound. I used it for approximately 4 years (through college) and haven't used it much since then. There are many reasons why I don't wear it; I have 2 children (ages 2 and 4) and it would be too loud for me. Another reason is my job; I'm a medical transcriptionist and my earphones go in my ear. I still have about 70 dB hearing in my left ear and perfect hearing in my right. Since the BAHA is behind my ear the hearing aid does no good. I hope this helps!

Isleybeaut42004 <carnetham@...> wrote:

Hi group,I had a radical mastoidectomy a few years ago and now my ENT suggests a hearing aid. I would like to know if anyone has used one for cholesteatoma related hearing loss, and what kind of experiences you had. ThanksCarnetha

[Guest guest]

I had c-toma surgeries when I was a kid (starting around age 9, now age

33), with a resulting loss of about 70db in my left ear. Two years ago,

I got my first hearing aid - a digital completely-in-canal (CIC) model,

and I love it. It helps add depth to sound, gives me a little more to

go on when I'm trying to understand people (especially my kids, ages 3

and 4).

It's not much use in noisy situations, like loud parties, but because

it's digital, it's smart enough to know what to amplify, and when to

butt out. A digital hearing aid gets programmed by your audiologist to

fit your hearing loss profile (my conductive loss is in the higher

frequencies, so that's what my aid amplifies - and it leaves lower

frequencies alone). It's also very comfortable, which is great most of

the time, but bad when I forget to remove it, such as when I get near a

pool (mine was splashed once while I was in a hot tub, and had to be

replaced - thankfully, it was under warranty at the time!). Another

benefit to the digital hearing aid is that you don't get the squealing

feedback most people associate with hearing aids. I can talk on the

phone with it without a problem - in fact, the only time I get any

feedback on it at all is when I'm putting it in, or when I accidentally

sleep with it in (and even then, the feedback isn't bad).

Some drawbacks to the hearing aid are that I've noticed an increase in

my tinnitus since starting to wear one. My audiologist swears that,

because the hearing aid is digital and knows when to raise or lower the

volume, it can't damage my hearing, but I've noticed it nonetheless.

Also, while it can be adjusted, it's a little difficult getting the

settings just right so you're comfortable all the time (in fact, I've

got to go back and get the settings adjusted again, as it seems a little

on the quiet side at the moment).

I'm happy with mine overall - hope this helps you make a decision!

-Jeff.

Hearing aid

Hi group,

I had a radical mastoidectomy a few years ago and now my ENT suggests

a hearing aid. I would like to know if anyone has used one for

cholesteatoma related hearing loss, and what kind of experiences you

had. Thanks

Carnetha

[Guest guest]

I tested the behind the ear model and loved it.

Hopefully I will be able to get one on the next six

months. My ins does not pay for heraing aids so the

$2500.00 for it had to come out of my pockit...

tom hansen

--- Jeff <jlcarter@...> wrote:

> I had c-toma surgeries when I was a kid (starting

> around age 9, now age

> 33), with a resulting loss of about 70db in my left

> ear. Two years ago,

> I got my first hearing aid - a digital

> completely-in-canal (CIC) model,

> and I love it. It helps add depth to sound, gives

> me a little more to

> go on when I'm trying to understand people

> (especially my kids, ages 3

> and 4).

>

> It's not much use in noisy situations, like loud

> parties, but because

> it's digital, it's smart enough to know what to

> amplify, and when to

> butt out. A digital hearing aid gets programmed by

> your audiologist to

> fit your hearing loss profile (my conductive loss is

> in the higher

> frequencies, so that's what my aid amplifies - and

> it leaves lower

> frequencies alone). It's also very comfortable,

> which is great most of

> the time, but bad when I forget to remove it, such

> as when I get near a

> pool (mine was splashed once while I was in a hot

> tub, and had to be

> replaced - thankfully, it was under warranty at the

> time!). Another

> benefit to the digital hearing aid is that you don't

> get the squealing

> feedback most people associate with hearing aids. I

> can talk on the

> phone with it without a problem - in fact, the only

> time I get any

> feedback on it at all is when I'm putting it in, or

> when I accidentally

> sleep with it in (and even then, the feedback isn't

> bad).

>

> Some drawbacks to the hearing aid are that I've

> noticed an increase in

> my tinnitus since starting to wear one. My

> audiologist swears that,

> because the hearing aid is digital and knows when to

> raise or lower the

> volume, it can't damage my hearing, but I've noticed

> it nonetheless.

> Also, while it can be adjusted, it's a little

> difficult getting the

> settings just right so you're comfortable all the

> time (in fact, I've

> got to go back and get the settings adjusted again,

> as it seems a little

> on the quiet side at the moment).

>

> I'm happy with mine overall - hope this helps you

> make a decision!

>

> -Jeff.

>

>

> Hearing aid

>

>

> Hi group,

> I had a radical mastoidectomy a few years ago and

> now my ENT suggests

> a hearing aid. I would like to know if anyone has

> used one for

> cholesteatoma related hearing loss, and what kind of

> experiences you

> had. Thanks

>

> Carnetha

>

>

>

>

[Guest guest]

Hi Carnetha,

For me the surgery wasn't bad at all. My doctor said that some doctors even do it under local anethesia. But he prefers to use general. The operation only takes about 20 min. I missed 2 days of work. On October 20th, I go to his office for "step 2" --- having the "snap" put into place and then 2 weeks from that date, I will finally get the actual hearing aid. I am using my regular aids right now. The incision for the BAHA is not noticeable. I have posted some pictures on the group site as far as what it looked like right afterwards. Good luck to you.

Ilona beaut42004 <carnetham@...> wrote:

Hey guys,Thanks for the response. I am now excited about getting a hearing aid for that ear because I have never heard much out of that ear. I am glad to see that they can be helpful in some situations. I would like to know from Ilona, , and any other BAHA wearers about the severity of the BAHA surgery. I can read the procedure in a book, but it cannot replace an actual person's experience. I will meet with the audiologist next month to discuss options. Carnetha

[Guest guest]

hey Carnetha, my name is kate and i have a baha hearing aid. the

surgery is relatively minor, only complications that could arise are

stitches breaking but then that only means it'll take a little

longer to heal. i'm only 16 but i've had around 18 major surgeries

for ctoma so compared to those, it's a breeze. i think most people

get out the same day but my blood pressure always drops low so i had

to stay in. you won't experience much pain afterwards but the whole

side of your head is numb for quite a while, and i don't think the

area around the abutment gets all the feeling back. i've had mine

for about 2 months so it's still pretty new to me, if you have any

questions just ask. oh and before you get it fitted, don't let

anyone built up your expectations of what it'll be like, explore it

for yourself or you might be disappointed. and you'll be tired and

get headaches while your brain tries to figure out what it's

hearing, be patient and keep it on as long as you can. hope all goes

well.

kate

[Guest guest]

Carnetha:

I had my BAHA surgery at age 18 and can't remember much. What I do know is that I also, at the same time, had a canaloplasty. They essentially widened my ear canal to allow more air to get in to dry it out as I was growing all kinds of fun stuff in there (i.e. green fuzzy mold!). Since my surgery I have not had ONE ear infection and I'm now 33! So, my BAHA was "installed" at the same time. They had to shave, make an elliptical incision kind of right smack dab in the center of the left side of my head and basically screwed the magnet into my skull (titanium screw). I have to be honest, I have some nerve damage that pretty much involves about 1/2 of the left side of my skull. I'm sure if I would have just had the BAHA procedure, my surgery would not have lasted as long and recovery time would have been less. I have normal hearing in my right ear and had c-toma in my left. I'm somewhat glad I have this. I don't

use it much now, but as time goes on, I'm sure I'll lose some hearing in my "good" ear and will have to use my hearing aid on the left more. The sound is pretty much the same as an in-the-ear hearing aid (kind of like you're in a tunnel) but it definitely helps amplify the sound.

I hope this helps, good luck.

Take care, I.beaut42004 <carnetham@...> wrote:

Hey guys,Thanks for the response. I am now excited about getting a hearing aid for that ear because I have never heard much out of that ear. I am glad to see that they can be helpful in some situations. I would like to know from Ilona, , and any other BAHA wearers about the severity of the BAHA surgery. I can read the procedure in a book, but it cannot replace an actual person's experience. I will meet with the audiologist next month to discuss options. Carnetha

[Guest guest]

I am going in for my second c-toma surgery the first was 25 years ago

with recontruction surgery I had decent hearing after for nearly 20

years - but this time there will be no reconstruction and I will

require a hearing aid - If others in the group have had to get

hearing aids I would appreciate knowing their thoughts.

[Guest guest]

>

> I am going in for my second c-toma surgery the first was 25 years ago

> with recontruction surgery I had decent hearing after for nearly 20

> years - but this time there will be no reconstruction and I will

> require a hearing aid - If others in the group have had to get

> hearing aids I would appreciate knowing their thoughts.

>

Hearing aids are not that bad I have been wearing at least 1 for the

last 27 years. You will need to find yourself a good audiologist that

deals with many makers. I have worn Phonak, Seimans and even a sears

merical ear. They all have good points and bad. There is also a wide

range of prices the most expensive is not always the best for your

purpose. Most of them are programable so the audiologist can program

the frequencies you are weak on and increase it. You will be amazed at

what you are missing after you wear one.

Charlie

[Guest guest]

I've had one for each ear for about 7 years now. They help a fair

amount, but I'm going to need something extra for meetings. If anyone

knows of anything please let me know. I chose " in the ear " instead of

" behind the ear " at the request of my wife. I have to keep them clean,

but that only takes a few minutes a day. Sometimes they get a little

itchy, but I usually don't realize that they're even there. Most people

don't notice them ... they don't expect someone my age to be wearing

them I guess.

In addition to " behind the ear " and " in the ear " , they do make " in the

canal " and " completely in the canal " - that was just a little too small

for me to deal with.

Since I'm still fairly young and active (not as active as I should be

though), I have a clear plastic piece that sticks up from the top of the

aid and gently wedges into the cartilage of my ear. That way when I hit

one of these wonderful Pittsburgh potholes on the way to work I'm not

fishing around on the car floor for the hearing aid that just popped

out. For a really sweaty task or workout (that I keep planning on), I

don't think I'll wear them. I do for long walks to help keep me out of

trouble with hearing vehicles.

Two is better than one because it will help you determine what direction

sound is coming from. Being monaural is kind of dangerous in my book -

been there, done that, and barely lived to tell about it.

Some folks have troubles with ear infections when they wear hearing

aids. There is a device called a BAHA that you can have implanted and

there are headbands to try out the technology before going through the

BAHA installation to see how well it will work.

Matt

wrote:

>

>

> >

> > I am going in for my second c-toma surgery the first was 25 years ago

> > with recontruction surgery I had decent hearing after for nearly 20

> > years - but this time there will be no reconstruction and I will

> > require a hearing aid - If others in the group have had to get

> > hearing aids I would appreciate knowing their thoughts.

> >

> Hearing aids are not that bad I have been wearing at least 1 for the

> last 27 years. You will need to find yourself a good audiologist that

> deals with many makers. I have worn Phonak, Seimans and even a sears

> merical ear. They all have good points and bad. There is also a wide

> range of prices the most expensive is not always the best for your

> purpose. Most of them are programable so the audiologist can program

> the frequencies you are weak on and increase it. You will be amazed at

> what you are missing after you wear one.

> Charlie

>

>

--

[Guest guest]

Thanks , UK

LMAO - after 14 surgeries not much frightens me - I want comfort and

sound quality - without too much fiddling -

Nan

Canada

>

> CholesteatomaI have had an analogue, behind-the-ear aid for nearly

10 years. It has its limitations - noisy rooms for example - but

there have been many, many occasions when I could not have managed

without it. Equally there have been times when it has lain unused

in its case for several weeks; my hearing is variable ( eustachian

tube dysfunction ) so there are times when I need assistance and

times when I don't.

>

> I have always worn behind-the-ear, never in-the-ear; the NHS in

the UK don't provide in-the-ear aids and I've no desire to spend up

to £1500 to acquire them privately - my vanity doesn't stretch that

far ! It should be borne in mind, too, that in-the-ear aids have

very small controls and that not everyone will be comfortable with

them.

>

> On Friday of this week I am collecting two new digital hearing

aids. If anyone is interested I will post my experiences as a

digital aid " newbie. " It will also be the first time I have had a

lump of plastic shoved in both ears simultaneously, so I'll say how I

get on with that too ( for example - how am I gonna answer my

mobile ? ROTFLMAO ! )

>

> Those who have been offered/advised to use a BAHA instead of a more

conventional aid, please don't be frightened of having that little

titanium post implanted ! There are far, far scarier things in the

world than having a BAHA. Dentists - crowded freeways -

Mugabe - Dubya.... to name but a few.

>

>

>

> UK

>

[Guest guest]

Louise wrote:-

>

> I remember when I got my first hearing aid. People must have thought I

> was mad. I couldn't stop smiling. And all the noises!!! I was amazed

> at hearing my keys jingle! lol

>

> No seriously, who is he? Have I got to go google him! I can honestly

> say that I don't tend to watch the news. It's so sad these days, or

> all about M and ! Who want's to hear about that!

>

Ah, the jingling keys ! That's one of my regular ways of testing my

(unassisted) hearing - I jangle a bunch of keys next to each ear to

see if I can work out which direction the sound is coming from :-)

Tee hee. Mugabe is the President of Zimbabwe, he has been in office

for 20 years and shows no sign of leaving voluntarily any time soon.

Opposing him is not recommended to anyone who wants a long and happy

life. I won't go on, this list is not the place and Google will tell

you far more than I could.

,

UK