Re: Managing ctoma - Ingrid

[Guest guest]

Hi Ingrid

Sorry to hear that there's no light at the end of the tunnel for you yet. Oddly, though not exactly welcome, I find the prospect of 'no cure' a bit of a relief. At least it means I know where I stand, just take each day as it comes and don't have to wait around perpetually hoping to get better.

Didn't you, or weren't you supposed to have a reconstruction, at one time - the kind where they place a little piston up against the cochlea.? I did have that done - the sound has been up and down but generally pretty good, though it seems to have increased my tinnitus and makes it more of a problem for the doctor to get inside that ear for cleaning. However, it was really the best available option available for me since this disease precludes me form wearing hearing aids or being a candidate for BAHA. Possibly like you, I've had hearing aids for much of my life and rarely ever worn them. Most of the time I had permanent discharge which made them unusable.

Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely hope you can find some resolution for your ongoing problems or at least enough to see an end to one surgery after another.

Stay in touch

Phil

Hi Phil,

I am really sorry that you are going through this again. I wish there was something I could say. Hopefully there will be something around the corner that will stop this monster from rearing its ugly head.

I am not in good shape either. The hearing in my left ear is now almost nothing after 5 surgeries, 2 different surgeons. The right ear is now almost in the same shape.

I am again attempting to wear the Canta 4 Hearing Aids. My last surgery was 6 weeks ago. After wearing the aids for just 3 days, I am starting to get that pounding sound in my left ear again. Same old story for me.

I really hope that there is a cure soon for everyone.

If I can be of any help to you, please let me know.

Sincerely,

Ingrid Jannetta

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[Guest guest]

Hi Phil about your story about your doctor talking pictures of your

ear. My old doctor did that also =). And he showed me how my ears

looked like. It was first then that I really understood what they

had done to my ears and how they looked like. It was also useful

since I could bring with me the photos I got from him to other

doctors showing how my ear looked liked at different stages.

> Hi Ingrid

>

> Sorry to hear that there's no light at the end of the tunnel for

you yet. Oddly, though not exactly welcome, I find the prospect

of 'no cure' a bit of a relief. At least it means I know where I

stand, just take each day as it comes and don't have to wait around

perpetually hoping to get better.

>

> Didn't you, or weren't you supposed to have a reconstruction, at

one time - the kind where they place a little piston up against the

cochlea.? I did have that done - the sound has been up and down but

generally pretty good, though it seems to have increased my tinnitus

and makes it more of a problem for the doctor to get inside that ear

for cleaning. However, it was really the best available option

available for me since this disease precludes me form wearing

hearing aids or being a candidate for BAHA. Possibly like you, I've

had hearing aids for much of my life and rarely ever worn them. Most

of the time I had permanent discharge which made them unusable.

>

> Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely

hope you can find some resolution for your ongoing problems or at

least enough to see an end to one surgery after another.

>

> Stay in touch

> Phil

>

>

> Hi Phil,

>

>

>

> I am really sorry that you are going through this again. I wish

there was something I could say. Hopefully there will be something

around the corner that will stop this monster from rearing its ugly

head.

>

>

>

> I am not in good shape either. The hearing in my left ear is

now almost nothing after 5 surgeries, 2 different surgeons. The

right ear is now almost in the same shape.

>

>

>

> I am again attempting to wear the Canta 4 Hearing Aids. My last

surgery was 6 weeks ago. After wearing the aids for just 3 days, I

am starting to get that pounding sound in my left ear again. Same

old story for me.

>

>

>

> I really hope that there is a cure soon for everyone.

>

>

>

> If I can be of any help to you, please let me know.

>

>

>

> Sincerely,

>

> Ingrid Jannetta

>

>

> ---

> Outgoing mail is certified Virus Free.

> Checked by AVG anti-virus system (http://www.grisoft.com).

> Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04

[Guest guest]

Sure if I had a scanner

> > Hi Ingrid

> >

> > Sorry to hear that there's no light at the end of the tunnel for

> you yet. Oddly, though not exactly welcome, I find the prospect

> of 'no cure' a bit of a relief. At least it means I know where I

> stand, just take each day as it comes and don't have to wait around

> perpetually hoping to get better.

> >

> > Didn't you, or weren't you supposed to have a reconstruction, at

> one time - the kind where they place a little piston up against the

> cochlea.? I did have that done - the sound has been up and down but

> generally pretty good, though it seems to have increased my

tinnitus

> and makes it more of a problem for the doctor to get inside that

ear

> for cleaning. However, it was really the best available option

> available for me since this disease precludes me form wearing

> hearing aids or being a candidate for BAHA. Possibly like you, I've

> had hearing aids for much of my life and rarely ever worn them.

Most

> of the time I had permanent discharge which made them unusable.

> >

> > Ears eh! Theyr'e nothing but trouble! So, Ingirid, I sincerely

> hope you can find some resolution for your ongoing problems or at

> least enough to see an end to one surgery after another.

> >

> > Stay in touch

> > Phil

> >

> >

> > Hi Phil,

> >

> >

> >

> > I am really sorry that you are going through this again. I wish

> there was something I could say. Hopefully there will be something

> around the corner that will stop this monster from rearing its ugly

> head.

> >

> >

> >

> > I am not in good shape either. The hearing in my left ear is

> now almost nothing after 5 surgeries, 2 different surgeons. The

> right ear is now almost in the same shape.

> >

> >

> >

> > I am again attempting to wear the Canta 4 Hearing Aids. My

last

> surgery was 6 weeks ago. After wearing the aids for just 3 days, I

> am starting to get that pounding sound in my left ear again. Same

> old story for me.

> >

> >

> >

> > I really hope that there is a cure soon for everyone.

> >

> >

> >

> > If I can be of any help to you, please let me know.

> >

> >

> >

> > Sincerely,

> >

> > Ingrid Jannetta

> >

> >

> > ---

> > Outgoing mail is certified Virus Free.

> > Checked by AVG anti-virus system (http://www.grisoft.com).

> > Version: 6.0.638 / Virus Database: 409 - Release Date: 21/03/04

>

>

>

>