Re: 2015:a cochlear odyssey

[Guest guest]

In a message dated 12/26/2004 12:42:18 PM Pacific Standard Time,

dkl.pearson@... writes:

It may be an issue with USA but I don't think it is many other countries.

it is!,,, the President put too much restrictions on stem cells research.

Lee

[Guest guest]

In a message dated 12/26/2004 2:47:17 PM Pacific Standard Time,

dkl.pearson@... writes:

They have change the date from January 5th to January 11th.

Where did you say you will have it done? i have mapping on the 11th,,

Perhaps we will run into each other.

Lee

[Guest guest]

In a message dated 12/26/2004 3:21:43 PM Pacific Standard Time,

howard@... writes:

CI Surgery today doesn't damage the inner ear.

Future medicine should undo the damage, if any.

explain this please.. having CI does and can damage inner ear,, that where

the choclea is. The choclea is part of inner ear.

Lee

[Guest guest]

In a message dated 12/26/2004 3:52:27 PM Pacific Standard Time,

howard@... writes:

If it gets damaged, it's an accident or incompetence. The implants made now

can be used in children. And it's not as if they can't be removed.

inserting the array will damage the haircells anyway.. please explain more.

Lee

[Guest guest]

In a message dated 12/26/2004 3:53:40 PM Pacific Standard Time, Spotted Lee

writes:

will damage the haircells anyway

this is why there is STERN warning that the implant more likely will destroy

any residual hearings

[Guest guest]

I've read a while back that the in England they have discovered a way restore

your hearing with stem cells research and hair cells in your cochlear. They

believed that they will have a cure for deafness in 10 years.

Pearson

WA St. USA

============================================================

From: " " <howard@...>

Date: 2004/12/26 Sun AM 07:54:09 GMT-11:00

< >

Subject: 2015:a cochlear odyssey

============================================================

Pearson

WA St. USA

[Guest guest]

I think there are issues with controlling how stem cells develop. And if a

genetic defect killed the hair cells, maybe that needs to be cured first.

2015:a cochlear odyssey

>

> ============================================================

>

>

> Pearson

> WA St. USA

>

>

>

[Guest guest]

Howie,

Probably its a multi faceted approach being taken to deal with just such

issues. Boys Town in Nebraska is probably doing this, as I do know they

have been studying geneitc therapy for years so I would not eb surprised if

they are also looking at the stem cell research as well.

*---* *---* *---* *---* *---*

" If we don't succeed, we run the risk of failure. "

--Al Gore

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

I hate to be a *naysayer* or rain on a parade..:-) but......

With replacement of the entire cochlea, I would be worried about other side

effects, such as damage to the facial nerve, balance nerve, trigeminal nerve

etc.

I had a small tumor of the inner ear 2.5cm x 1.5 cm and the removal of that

tumor left me deaf on the right side and the entire right side of my scalp numb,

plus some ongoing issues with pain due to cutting into the muscles of the right

side of my upper neck. This is why I am wary of any extensive surgical

procedures that are suggested as a cure for hearing loss. (Taste, smell,

tearing and even how my *nose runs* were all affected on the right side with

that surgery). With this surgery many people have facial nerve damage that

requires a weight being placed into their eyelid, or they may have headaches for

life or roaring tinnitis. I was very lucky to emerge from that surgery with

minor side effects and the tumor was just in the intrauricular canal (IAC) of

the inner ear.

Having a cochlear implant was a breeze compared to what I went thru in 1994. I

suggest that no one wait around for a *cochlear replacement*. Get your CI now..

Just food for thought .... sometimes the cure is worse than the malady if the

original condition is not life threatening.

Pam

2015:a cochlear odyssey

TEN YEARS FROM NOW

In the past ten years, we've seen impressive advances in cochlear implant

technology. Where will it be in ten years from now? To begin with, I think

the external parts will be done away with.

The surgery will probably be possible with a local and bracing the head.

Perhaps an " artificial cochlea " will replace the defective one and be

powered by the heat of the body. What do you think?

[Guest guest]

Wow. Although I imagine surgical procedures are better nw and will continue

to advance.

2015:a cochlear odyssey

>

>

> TEN YEARS FROM NOW

>

> In the past ten years, we've seen impressive advances in cochlear implant

> technology. Where will it be in ten years from now? To begin with, I

> think

> the external parts will be done away with.

>

> The surgery will probably be possible with a local and bracing the head.

> Perhaps an " artificial cochlea " will replace the defective one and be

> powered by the heat of the body. What do you think?

>

>

>

>

[Guest guest]

What you said is true... There is a chance, however small these things can

happen.

It can happen with cochlear implant too. I know one person who received her

first implant, half of her face was paralyzed. There was movement and drooping

on one side of her face. Fortunately, it was only short term. She got back her

normal about a couple of months.

There even a chance that you can die on the operation table... A very small one

but there is a chance.

Pearson

sville, WA

2015:a cochlear odyssey

TEN YEARS FROM NOW

In the past ten years, we've seen impressive advances in cochlear implant

technology. Where will it be in ten years from now? To begin with, I think

the external parts will be done away with.

The surgery will probably be possible with a local and bracing the head.

Perhaps an " artificial cochlea " will replace the defective one and be

powered by the heat of the body. What do you think?

[Guest guest]

If it gets damaged, it's an accident or incompetence. The implants made now

can be used in children. And it's not as if they can't be removed.

Re: 2015:a cochlear odyssey

>

>

> In a message dated 12/26/2004 3:21:43 PM Pacific Standard Time,

> howard@... writes:

>

> CI Surgery today doesn't damage the inner ear.

> Future medicine should undo the damage, if any.

>

>

> explain this please.. having CI does and can damage inner ear,, that

> where

> the choclea is. The choclea is part of inner ear.

>

> Lee

>

>

>

[Guest guest]

Well, if these hair cells aren't working well enough that you get a CI, that

seems a moot point. Especially if stem cells can bring them back in the

future or other genetic therapy.

Re: 2015:a cochlear odyssey

>

>

> In a message dated 12/26/2004 3:52:27 PM Pacific Standard Time,

> howard@... writes:

>

> If it gets damaged, it's an accident or incompetence. The implants made

> now

>

> can be used in children. And it's not as if they can't be removed.

>

>

> inserting the array will damage the haircells anyway.. please explain

> more.

>

> Lee

>

>

>

[Guest guest]

I had very excellent results from the acoustic neuroma surgery. I've remained

in touch with a listserve that is just for AN patients and even today there are

many who emerge from that surgery with life altering after effects (far worse

than mine). It depends on how large the tumor is and the route used and also on

the surgeon's expertise. Spinal fluid leak is another frequent side effect.

So all I am saying is that any surgery that would have to go into the inner ear

to replace the cochlea would involve taking the cochlea out and then putting in

a prosthesis plus 7 hours or so on the surgical table and it would be a more

extensive, higher risk, surgery than the CI. I don't think I would opt for it

(if it does become available) until 5 years or so after they start doing it.

Pam

Re: 2015:a cochlear odyssey

What you said is true... There is a chance, however small these things can

happen.

It can happen with cochlear implant too. I know one person who received her

first implant, half of her face was paralyzed. There was movement and drooping

on one side of her face. Fortunately, it was only short term. She got back her

normal about a couple of months.

There even a chance that you can die on the operation table... A very small

one but there is a chance.

[Guest guest]

It's not a moot point. I had a tiny bit of residual hearing in my left ear

until the CI surgery. For that month of waiting for activation, I really

thought I was going to go mad with the deathly silence... You have no idea what

a tiny bit of natural hearing means to a person and the grief a person

experiences with it's loss. So yes the CI damages the inner ear and I will

always hope that nothing ever happens to make it impossible to use the CI in my

future.

Pam S. (in Alaska)

Re: 2015:a cochlear odyssey

Well, if these hair cells aren't working well enough that you get a CI, that

seems a moot point. Especially if stem cells can bring them back in the

future or other genetic therapy.

[Guest guest]

Pam

The CI's whole point is to bypass hair cells. But I can imagine how you

feel. I gather that future CIs will address this better and preserve that

hearing.

Re: 2015:a cochlear odyssey

>

>

> Well, if these hair cells aren't working well enough that you get a CI,

> that

> seems a moot point. Especially if stem cells can bring them back in the

> future or other genetic therapy.

>

>

>

[Guest guest]

That's great

Regarding the waiting, I believe that if one is qualified to get CI,

then go for it. It's not worthwhile to keep on waiting, as we all

know, the people we would like to deal with do not live forever,

neither do us. We all are entitled to enjoy the hearing world.

Regards/

Jerome

On Sun, 26 Dec 2004 19:53:27 -0500, <howard@...> wrote:

>

> Pam

>

> The CI's whole point is to bypass hair cells. But I can imagine how you

> feel. I gather that future CIs will address this better and preserve that

> hearing.

>

> Re: 2015:a cochlear odyssey

> >

> >

> > Well, if these hair cells aren't working well enough that you get a CI,

> > that

> > seems a moot point. Especially if stem cells can bring them back in the

> > future or other genetic therapy.

> >

> >

> >

[Guest guest]

Pam,

I agree. I had to wait six weeks for activation of my CI, and it

was really hard for me to function, even though I still had a HA on

my unimplanted ear. The hearing in my implanted ear was virtually

nil, but it still made a big difference in how I heard between the

time of my surgery and activation of my CI (and bigger difference

once I started to understand what I was hearing with the CI...I

don't even wear a HA in my other ear anymore). That little bit of

residual hearing is better than none. I would do the CI surgery

again, but I'm not sure about bilateral CI's. I don't know if I

want to go through having my head shaved, the surgery, and the

recovery again, as well as having NO sound from that ear during the

recovery period. In the long run it would probably be worth it, but

I'm going to wait a few years at least and see what the research

shows about bilateral CI's after more people get them.

Beth

[Guest guest]

One of the reasons that I chose the type of CI that I have was that

I was told that it preserves the cochlea for future technological

advances. It seems like that was in the informational packet I read

before I chose this one, but it may have come from one of the

implant team.

Beth

> Pam

>

> The CI's whole point is to bypass hair cells. But I can imagine

how you

> feel. I gather that future CIs will address this better and

preserve that

> hearing.

>

>

[Guest guest]

Pam, AMEN!! Residual hearing is the reason why I chose to implant my worse

ear. Thankfully I don't notice any difference in sound between now versus

when I wore a HA in my left ear. Because the hearing in both ears was so

similar (with the only exception being that one ear had no speech

discrimination for almost 10 years), I could have had either ear implanted.

If I could have only implanted my right ear, the decision to get a CI would

not have been that straightforward...do I risk that residual hearing and if

so, what happens if a CI doesn't work for me? Will I be worse off than

before? Residual hearing (no matter how little there is) cannot and should

not be underestimated. Even though I've had severe to profound hearing loss

for 9 1/2 years, I was able to use an FM system until 2-3 years ago for

communication. Even now, the residual hearing in my nonimplanted ear is what

is allowing me to cope just fine with total deafness in my left ear until

activation.

Implanted: 12/22/04

Activation date: 1/18/05 (24 days and counting!)

Deafblind/Postlingual

BTE hearing aid user 19 years

Severe-profound hearing loss 9 1/2 years

[Guest guest]

,

CI surgery *does* cause damage to the cochlear. After all, it needs to be

punctured which in turn destroys 99% (if not all) of one's remaining

hearing. If a surgeon is incompetent and I suffer the consequences as a

result, I would *hope* that a malpractice suit would compensate me for the

loss. However, when one decides to have CI surgery, they are accepting

responsibility for all of the associated risks. Suing a doctor for

malpractice is easier said than done and doesn't always mean you will be

justly compensated.

Implanted: 12/22/04

Activation date: 1/18/05 (24 days and counting!)

Deafblind/Postlingual

BTE hearing aid user 19 years

Severe-profound hearing loss 9 1/2 years.

[Guest guest]

You are lucky you had a choice and still have one ear you can use a HA in. You

are very right to appreciate your residual hearing.

I have one ear completely deaf due to the dratted tumor and the other ear was

98% deaf, used a powerful HA, but unable to understand speech.

The implant team would not work on the tumor ear (which was my original request)

and would only give me a CI in the ear with residual hearing.

All these reasons are why I took ten years to make the decision and why I

researched the CI so carefully before I went ahead.

It turned out very well though and now I am glad I went ahead!

Pam S. (in Anchorage)

Re: 2015:a cochlear odyssey

Pam, AMEN!! Residual hearing is the reason why I chose to implant my worse

ear. Thankfully I don't notice any difference in sound between now versus

when I wore a HA in my left ear. Because the hearing in both ears was so

similar (with the only exception being that one ear had no speech

discrimination for almost 10 years),

[Guest guest]

Ah yes, that hole. Fair point there. As for the hair cells that's

inevitable but wasn't a big deal for me..

Re: 2015:a cochlear odyssey

>

> ,

>

> CI surgery *does* cause damage to the cochlear. After all, it needs to be

> punctured which in turn destroys 99% (if not all) of one's remaining

> hearing. If a surgeon is incompetent and I suffer the consequences as a

> result, I would *hope* that a malpractice suit would compensate me for the

> loss. However, when one decides to have CI surgery, they are accepting

> responsibility for all of the associated risks. Suing a doctor for

> malpractice is easier said than done and doesn't always mean you will be

> justly compensated.

>

>

> Implanted: 12/22/04

> Activation date: 1/18/05 (24 days and counting!)

> Deafblind/Postlingual

> BTE hearing aid user 19 years

> Severe-profound hearing loss 9 1/2 years.

>

>

>

>

>

>

[Guest guest]

Pam,

I definitely appreciate the tough decision you had to make regarding a CI

and am *very* glad it turned out well in the end for you!! <smile>

Implanted: 12/22/04

Activation date: 1/18/05 (24 days and counting!)

Deafblind/Postlingual

BTE hearing aid user 19 years

Severe-profound hearing loss 9 1/2 years

[Guest guest]

Try fourteen years of complete silence and you sure will appreciate all and any

noise!!

I am so thankful for my hearing now.

Phyllis

Re: 2015:a cochlear odyssey

Well, if these hair cells aren't working well enough that you get a CI, that

seems a moot point. Especially if stem cells can bring them back in the

future or other genetic therapy.