More on hearing aids, cochlear implants...

[Guest guest]

Hi Patty and a - My experience: I lost the hearing in right ear at 12

triggered by mumps but now thought to be related to my MELAS. That side is

gone completely but in my 20s the left ear started going put done to a scuba

diving " accident " but now known to be the MELAS. I am now using a programmable

digital hearing aid for 60% loss in left ear and also have this gadget

(microphone) that I put in my right ear with a cord running round the back to

the left ear to take the right sided sound round there. I don't use it that

often as it is convoluted to put on and off but handy to have in case I get

invited to a State dinner... I must admit that I am having some problems at

work now as working for a doctor trying to juggle dictaphone (where I have to

take aid out and put earphones in), telephone (which is supposed to work with a

little switch in middle of hearing aid but is actually better without hearing

aid), and people at desk, where I really need the hearing aid. It's getting to

the point where I can't really handle the multitasking (of course I cant handle

it anyway in my head but prefer to say its my hearing).

Re cochlear implants which I know nothing about. I just met someone (not mito)

who has a cochlear implant - he was almost completely deaf since birth and now

about 30 and it has changed his life since he got it put in several years ago.

They were urging me to look into it (his mother was working for the dr/group who

I think pioneered cochlear implants here in Sydney). Although it is probably a

little premature for me I have started thinking about it since talking to them,

as they were talking about it being important to make the move while the hearing

and sounds are still registered in memory. This young man also was saying the

cochlear implant was so much better for him than regular hearing aids. I would

be interested in hearing the thoughts of anyone who has gone from hearing aids

to cochlear implant. You mentioned it as if it would be a last resort a -

what are the pros and cons - can you reprogram the implant also? One thing I

would be interested in is if you make the sounds softer at will as I find sharp

sounds can be quite stressful and just want to switch off... Pamela (MELAS)

Re:hearing aids

Patty,

I wear two over the ear hearing aids, the largest they make. They are

digital and the programmable component is important as your hearing

decreases.

Besides the programmable component there are 3 settings. One is for general

use, the other for just sounds coming from the direction I am facing (useful

in

a noisy environment when conversing with others), and a third for the

telephone. Since I have a phone that can be volume adjusted I had the third

component programed so I can hear the range of sound in music.

No one has mentioned the molds which are very important to the system.

There are soft or hard molds. The soft molds are more comfortable and fit

tighter to prevent extraneous sounds.

Do use the 30 day testing system and the warranty. Mine will be

reprogrammed at no cost as long as I use them. Unfortunately I am

approaching the

cochlear implant threshold.

Supplement your hearing aids with devices available for the hearing

impaired. (Available through services that help the deaf.). I supplement my

hearing

aids with a bed shaker for awakening me on time in the morning. The system

turns on lamps and makes them blink when there are load noises, the doorbell

rings or the telephone rings. (It also makes the lamps blink whenever I

vacuum.). When I was living alone, I used the motion detector that was

placed at

the bottom of the stairs and would make the lights blink if there was motion

on the stairway. It was adjustable in height so the cat would not set it

off.

a (MELAS)

[Guest guest]

If you are interested in the cochlear implant - which I feel creates

miracles in the lives of those who have hearing loss - please go to

my website at http://www.cihear.com where you can find just about

anything you need to know about them.

I have mito and I have a cochlear implant. I wore a hearing aid

before I had my CI surgery. Even though I do not have the full

benefit of the implant as most users do, I cannot stress how

wonderful the device is. In comparison to hearing aids, there is

none. A CI is an entirely different device and I can honestly say

it is one of the best things I have ever done for myself.

Alice

Mitoldies Listowner

http://www.cihear.com

>

> Re cochlear implants which I know nothing about. I just met

someone (not mito) who has a cochlear implant - he was almost

completely deaf since birth and now about 30 and it has changed his

life since he got it put in several years ago. They were urging me

to look into it (his mother was working for the dr/group who I think

pioneered cochlear implants here in Sydney). Although it is

probably a little premature for me I have started thinking about it

since talking to them, as they were talking about it being important

to make the move while the hearing and sounds are still registered

in memory. This young man also was saying the cochlear implant was

so much better for him than regular hearing aids. I would be

interested in hearing the thoughts of anyone who has gone from

hearing aids to cochlear implant. You mentioned it as if it would

be a last resort a - what are the pros and cons - can you

reprogram the implant also? One thing I would be interested in is

if you make the sounds softer at will as I find sharp sounds can be

quite stressful and just want to switch off... Pamela (MELAS)

[Guest guest]

Pamela I too am diagnosed with MELAS (13 yrs now) I used to have a mid range

hearing loss and managed fine with my hearing aids. Suddenly I went totally

deaf in one ear and a month later totally deaf in the other. I was implanted

12 1/2 years ago with an implant made by cochlear corporation (you may know

them as they are an Australian company) What the implant gives me is

sound....that I learn to understand and recognize. Your outer components are a

processor

which is mapped to your needs. This is done more or less on a regular

basis....quite often in the beginning less so later on. Alice's site cihear is

a

wonderful resource. Vivian

[Guest guest]

So did you have to relearn the sounds Vivian, that quickly? How long were you

actually deaf before the implant? I am trying to guage when one would implant -

I would have thought as the last resort, when you have to (ie almost or

completely deaf). My friends from Cochlear were I think suggesting earlier than

that is better for the memory reason... Thks in advance. pamela

Re: More on hearing aids, cochlear implants...

Pamela I too am diagnosed with MELAS (13 yrs now) I used to have a mid range

hearing loss and managed fine with my hearing aids. Suddenly I went totally

deaf in one ear and a month later totally deaf in the other. I was implanted

12 1/2 years ago with an implant made by cochlear corporation (you may know

them as they are an Australian company) What the implant gives me is

sound....that I learn to understand and recognize. Your outer components are

a processor

which is mapped to your needs. This is done more or less on a regular

basis....quite often in the beginning less so later on. Alice's site cihear

is a

wonderful resource. Vivian

[Guest guest]

Hi Pam, I have successfully used the cochlear implant for 19 years.

I was profoundly deaf, using a body hearing aid with a Y cord at the

time of implant. I would be glad to share any of my experiences or

answer questions. I function like a person with a mild hearing loss

with the CI. I have had a hearing loss from birth, starting out hard

of hearing progressing down to profoundly deaf by the age of 24. I was

implanted at the age of 39.

I have a Mitochondial Myopathy diagnosis. The criteria has changed

for the CI since I got mine. Now you have to have a severe to

profound hearing loss, with 60% discrimination bilaterally, with less

that 50% discrimination in the ear to be implanted. (this is the

amount of words you can understand without vision - when tested by an

implant audiologist)

Ruth

>

> Hi Patty and a - My experience: I lost the hearing in right ear

at 12 triggered by mumps but now thought to be related to my MELAS.

That side is gone completely but in my 20s the left ear started going

put done to a scuba diving " accident " but now known to be the MELAS. I

am now using a programmable digital hearing aid for 60% loss in left

ear and also have this gadget (microphone) that I put in my right ear

with a cord running round the back to the left ear to take the right

sided sound round there. I don't use it that often as it is

convoluted to put on and off but handy to have in case I get invited

to a State dinner... I must admit that I am having some problems at

work now as working for a doctor trying to juggle dictaphone (where I

have to take aid out and put earphones in), telephone (which is

supposed to work with a little switch in middle of hearing aid but is

actually better without hearing aid), and people at desk, where I

really need the hearing aid. It's getting to the point where I can't

really handle the multitasking (of course I cant handle it anyway in

my head but prefer to say its my hearing).

>

> Re cochlear implants which I know nothing about. I just met someone

(not mito) who has a cochlear implant - he was almost completely deaf

since birth and now about 30 and it has changed his life since he got

it put in several years ago. They were urging me to look into it (his

mother was working for the dr/group who I think pioneered cochlear

implants here in Sydney). Although it is probably a little premature

for me I have started thinking about it since talking to them, as they

were talking about it being important to make the move while the

hearing and sounds are still registered in memory. This young man

also was saying the cochlear implant was so much better for him than

regular hearing aids. I would be interested in hearing the thoughts

of anyone who has gone from hearing aids to cochlear implant. You

mentioned it as if it would be a last resort a - what are the pros

and cons - can you reprogram the implant also? One thing I would be

interested in is if you make the sounds softer at will as I find sharp

sounds can be quite stressful and just want to switch off... Pamela

(MELAS)

> Re:hearing aids

>

>

> Patty,

>

> I wear two over the ear hearing aids, the largest they make.

They are

> digital and the programmable component is important as your

hearing decreases.

> Besides the programmable component there are 3 settings. One is

for general

> use, the other for just sounds coming from the direction I am

facing (useful in

> a noisy environment when conversing with others), and a third for

the

> telephone. Since I have a phone that can be volume adjusted I had

the third

> component programed so I can hear the range of sound in music.

>

> No one has mentioned the molds which are very important to the

system.

> There are soft or hard molds. The soft molds are more

comfortable and fit

> tighter to prevent extraneous sounds.

>

> Do use the 30 day testing system and the warranty. Mine will be

> reprogrammed at no cost as long as I use them. Unfortunately I am

approaching the

> cochlear implant threshold.

>

> Supplement your hearing aids with devices available for the hearing

> impaired. (Available through services that help the deaf.). I

supplement my hearing

> aids with a bed shaker for awakening me on time in the morning.

The system

> turns on lamps and makes them blink when there are load noises,

the doorbell

> rings or the telephone rings. (It also makes the lamps blink

whenever I

> vacuum.). When I was living alone, I used the motion detector

that was placed at

> the bottom of the stairs and would make the lights blink if there

was motion

> on the stairway. It was adjustable in height so the cat would

not set it

> off.

>

> a (MELAS)

>

>

>