Re: Lynn Reconstruction and Hearing Aids

December 15, 2003

Hi Lynn,

I am in New Westminster, BC CAnada.

> > > Quoting Connie and Hank Schwedes <conniedcj@y...>:

> > >

> > > > I have such mixed emotions. After being hard of hearing all my

> life,

> > > > I had reconstruction on my left ear at age 20 (21 years ago).

> I was

> > > > so excited at the time. The surgery worked -- for about a

> month.

> > > > Then the prosthesis came out. I was crushed. I remember

> crying after

> > > > hearing music for the first time post surgery. And then it was

> gone.

> > > > I had to do a lot of readjustment in my thinking -- pull

> myself up by

> > > > my boot straps -- and be thankful that with a hearing aid, I

> could

> > hear.

> > > >

> > > > The thing is that I didn't know if I wanted to go through that

> again.

> > > > While I appreciate the fact that the doc wants help me to hear

> > > > better, I was really surprised, shocked after surgery. It's my

> fault

> > > > that I didn't say anything to the doc about my feelings. I

> figured it

> > > > was a non-issue for 6 more months.

> > > >

> > > > Anyway, my husband and mom are really excited for and I just

> can't

> > > > bring myself to feel anything. I felt a little angry at myself

> that I

> > > > didn't verbalize my feelings before. Believe it or not, now I

> feel

> > > > " stuck with it. " I'm afraid that it won't work.

> > > >

> > > > So, I'm wondering about the experiences of the folks in this

> group.

> > > > Has reconstruction worked? Did anyone have a failed attempt,

> which

> > > > later worked? Have things really changed in the last 20 years

> on the

> > > > reconstruction front?

> > > >

> > > > Thanks for listening.

> > > > Connie

> > >

> > > Connie,

> > >

> > > [WARNING: Might be a little graphic. Stop reading now if you're

> > squinchy.]

> > >

> > > I'm almost in the same boat right now. My prosthesis is in the

> > process of

> > > coming out. It's hanging on, but a large part of it is sticking

> out

> > through

> > > my ear drum. Ugh. I feel like I'm harboring the Alien. It's

> still

> > > working for the most part, I have about 30% hearing in that ear.

> When

> > > yours came out, did it hurt? Was there a lot of bleeding? Any

> > infection?

> > > I guess I'm trying to figure out what to expect. My otologist

> seems to

> > > think that it could hold on for a long time. Although in the

> last six

> > > months, it's gone from just pressing against the TM to having

the

> head

> > > totally exposed. Actually, it was kind of cool to see it on the

> video

> > > screen.

> > >

> > > I just don't know if I want to go through another

reconstruction.

> > My first

> > > one was engulfed with a recurrence of cholesteatoma and had to

be

> > replaced

> > > 18 months after it was implanted. This one has been hanging on

> for

> > nearly

> > > four years. I'm like you, I just don't know if I want to go

> through

> > this

> > > again. My health insurance will pay for reconstruction after

> > > reconstruction, but won't cover a single lousy hearing aid. It's

> not

> > > right. I don't know if I can deal with another surgery -- if I

> have a

> > > choice, anyway.

> > >

> > > Anyone out there have experience with this? Have you had a

> hearing aid

> > > then later had reconstruction? How is the sound quality with an

> aid

> > vs. an

> > > implant? How often do you have to buy aid batteries and how

> > expensive are

> > > they?

> > >

> > > --

> > > Diane Brunet

> > > http://www.sassysuds.com

>

December 17, 2003

Hi from BC.

I thought there was another here. I am in Ontario, but I haven't

had any problems getting treatment for c-toma... as least after they finally

diagnosed it. I am waiting now for reconstruction surgery, and I should be

getting a call in January. If that doesn't work, I am thinking of getting a

hearing aid, and I am encouraged about your good experience with Unitron.

My daughter is working there (in marketing) for her university co-op period

and they are sending her to Switzerland in Jan for 2 months. What kind of

hearing aid do you have? and are your new problems in the ear with the aid,

or the other ear?

Lynn

-- Re: Lynn Reconstruction and Hearing Aids

Hi Lynn,

I am in New Westminster, BC CAnada.

> > > Quoting Connie and Hank Schwedes <conniedcj@y...>:

> > >

> > > > I have such mixed emotions. After being hard of hearing all my

> life,

> > > > I had reconstruction on my left ear at age 20 (21 years ago).

> I was

> > > > so excited at the time. The surgery worked -- for about a

> month.

> > > > Then the prosthesis came out. I was crushed. I remember

> crying after

> > > > hearing music for the first time post surgery. And then it was

> gone.

> > > > I had to do a lot of readjustment in my thinking -- pull

> myself up by

> > > > my boot straps -- and be thankful that with a hearing aid, I

> could

> > hear.

> > > >

> > > > The thing is that I didn't know if I wanted to go through that

> again.

> > > > While I appreciate the fact that the doc wants help me to hear

> > > > better, I was really surprised, shocked after surgery. It's my

> fault

> > > > that I didn't say anything to the doc about my feelings. I

> figured it

> > > > was a non-issue for 6 more months.

> > > >

> > > > Anyway, my husband and mom are really excited for and I just

> can't

> > > > bring myself to feel anything. I felt a little angry at myself

> that I

> > > > didn't verbalize my feelings before. Believe it or not, now I

> feel

> > > > " stuck with it. " I'm afraid that it won't work.

> > > >

> > > > So, I'm wondering about the experiences of the folks in this

> group.

> > > > Has reconstruction worked? Did anyone have a failed attempt,

> which

> > > > later worked? Have things really changed in the last 20 years

> on the

> > > > reconstruction front?

> > > >

> > > > Thanks for listening.

> > > > Connie

> > >

> > > Connie,

> > >

> > > [WARNING: Might be a little graphic. Stop reading now if you're

> > squinchy.]

> > >

> > > I'm almost in the same boat right now. My prosthesis is in the

> > process of

> > > coming out. It's hanging on, but a large part of it is sticking

> out

> > through

> > > my ear drum. Ugh. I feel like I'm harboring the Alien. It's

> still

> > > working for the most part, I have about 30% hearing in that ear.

> When

> > > yours came out, did it hurt? Was there a lot of bleeding? Any

> > infection?

> > > I guess I'm trying to figure out what to expect. My otologist

> seems to

> > > think that it could hold on for a long time. Although in the

> last six

> > > months, it's gone from just pressing against the TM to having

the

> head

> > > totally exposed. Actually, it was kind of cool to see it on the

> video

> > > screen.

> > >

> > > I just don't know if I want to go through another

reconstruction.

> > My first

> > > one was engulfed with a recurrence of cholesteatoma and had to

be

> > replaced

> > > 18 months after it was implanted. This one has been hanging on

> for

> > nearly

> > > four years. I'm like you, I just don't know if I want to go

> through

> > this

> > > again. My health insurance will pay for reconstruction after

> > > reconstruction, but won't cover a single lousy hearing aid. It's

> not

> > > right. I don't know if I can deal with another surgery -- if I

> have a

> > > choice, anyway.

> > >

> > > Anyone out there have experience with this? Have you had a

> hearing aid

> > > then later had reconstruction? How is the sound quality with an

> aid

> > vs. an

> > > implant? How often do you have to buy aid batteries and how

> > expensive are

> > > they?

> > >

> > > --

> > > Diane Brunet

> > > http://www.sassysuds.com

>

December 18, 2003

Good luck on your upcoming surgery Lynn. I will be praying for you. I

trust things will go well. I know you will be so relieved when its

behind you. We have all been there. So know I am pulling for you!

Merry Christmas!

-- In cholesteatoma , " Lynn Witkowski " <lynnwit@s...>

wrote:

> Hi from BC.

> I thought there was another here. I am in Ontario, but I

haven't

> had any problems getting treatment for c-toma... as least after

they finally

> diagnosed it. I am waiting now for reconstruction surgery, and I

should be

> getting a call in January. If that doesn't work, I am thinking of

getting a

> hearing aid, and I am encouraged about your good experience with

Unitron.

> My daughter is working there (in marketing) for her university co-

op period

> and they are sending her to Switzerland in Jan for 2 months. What

kind of

> hearing aid do you have? and are your new problems in the ear with

the aid,

> or the other ear?

> Lynn

>

> -- Re: Lynn Reconstruction and Hearing Aids

>

> Hi Lynn,

> I am in New Westminster, BC CAnada.

>

> > > > Quoting Connie and Hank Schwedes <conniedcj@y...>:

> > > >

> > > > > I have such mixed emotions. After being hard of hearing all

my

> > life,

> > > > > I had reconstruction on my left ear at age 20 (21 years

ago).

> > I was

> > > > > so excited at the time. The surgery worked -- for about a

> > month.

> > > > > Then the prosthesis came out. I was crushed. I remember

> > crying after

> > > > > hearing music for the first time post surgery. And then it

was

> > gone.

> > > > > I had to do a lot of readjustment in my thinking -- pull

> > myself up by

> > > > > my boot straps -- and be thankful that with a hearing aid, I

> > could

> > > hear.

> > > > >

> > > > > The thing is that I didn't know if I wanted to go through

that

> > again.

> > > > > While I appreciate the fact that the doc wants help me to

hear

> > > > > better, I was really surprised, shocked after surgery. It's

my

> > fault

> > > > > that I didn't say anything to the doc about my feelings. I

> > figured it

> > > > > was a non-issue for 6 more months.

> > > > >

> > > > > Anyway, my husband and mom are really excited for and I just

> > can't

> > > > > bring myself to feel anything. I felt a little angry at

myself

> > that I

> > > > > didn't verbalize my feelings before. Believe it or not, now

I

> > feel

> > > > > " stuck with it. " I'm afraid that it won't work.

> > > > >

> > > > > So, I'm wondering about the experiences of the folks in this

> > group.

> > > > > Has reconstruction worked? Did anyone have a failed attempt,

> > which

> > > > > later worked? Have things really changed in the last 20

years

> > on the

> > > > > reconstruction front?

> > > > >

> > > > > Thanks for listening.

> > > > > Connie

> > > >

> > > > Connie,

> > > >

> > > > [WARNING: Might be a little graphic. Stop reading now if

you're

> > > squinchy.]

> > > >

> > > > I'm almost in the same boat right now. My prosthesis is in the

> > > process of

> > > > coming out. It's hanging on, but a large part of it is

sticking

> > out

> > > through

> > > > my ear drum. Ugh. I feel like I'm harboring the Alien. It's

> > still

> > > > working for the most part, I have about 30% hearing in that

ear.

> > When

> > > > yours came out, did it hurt? Was there a lot of bleeding? Any

> > > infection?

> > > > I guess I'm trying to figure out what to expect. My otologist

> > seems to

> > > > think that it could hold on for a long time. Although in the

> > last six

> > > > months, it's gone from just pressing against the TM to having

> the

> > head

> > > > totally exposed. Actually, it was kind of cool to see it on

the

> > video

> > > > screen.

> > > >

> > > > I just don't know if I want to go through another

> reconstruction.

> > > My first

> > > > one was engulfed with a recurrence of cholesteatoma and had to

> be

> > > replaced

> > > > 18 months after it was implanted. This one has been hanging on

> > for

> > > nearly

> > > > four years. I'm like you, I just don't know if I want to go

> > through

> > > this

> > > > again. My health insurance will pay for reconstruction after

> > > > reconstruction, but won't cover a single lousy hearing aid.

It's

> > not

> > > > right. I don't know if I can deal with another surgery -- if I

> > have a

> > > > choice, anyway.

> > > >

> > > > Anyone out there have experience with this? Have you had a

> > hearing aid

> > > > then later had reconstruction? How is the sound quality with

an

> > aid

> > > vs. an

> > > > implant? How often do you have to buy aid batteries and how

> > > expensive are

> > > > they?

> > > >

> > > > --

> > > > Diane Brunet

> > > > http://www.sassysuds.com

> >

December 21, 2003

Hi Lynn,

The BC healthcare is very bad and the wait list is very long.

For example, I suffer from migraines and I usually go to emergency

for some meds to knock me out. I went on Friday and they had a sign

up saying minimum 8 hr wait to see a DR. Can you beleive that?

If you should opt for a hearing aid, I highly suggest the digital.

Well, depends on your type of loss as well. I have about 5% left in

my one ear so the digital was for me. The one I wear is a Unitron

Unison 4 and has many features. Doesn't that sound funny??? Anyways,

I know Ontario healthcare covers a nice chunk of it while BC health

does't. My husband paid about 1500 for mine, it should have been

about 1900 I think.

Look around for a good dispenser. I saw one in the Ottawa area,

(lived there for 9 yrs) if

your close, email me and I will give his name. He is way OVERPRICED.

and when the dispenser here found out what I paid for my analog inner

ear one he almost choked.

The C-toma was found in my good ear as I call it.

They want to do a CWU proceudre but I am not sure I feel comfie with

that. I hear alot of stories of recurrence and that scares me.

My first surgery when I was 15 (18 yrs ago) was the most horrifying

experience I had ever gone through. Technology was so different then

and I am positive this surgery will be much smoother.

Good luck on your surgery and I wish you all the best.

Keep us informed on the outcome.

Merry Christmas and Happy New year to you and your family.

> > > > Quoting Connie and Hank Schwedes <conniedcj@y...>:

> > > >

> > > > > I have such mixed emotions. After being hard of hearing all

my

> > life,

> > > > > I had reconstruction on my left ear at age 20 (21 years

ago).

> > I was

> > > > > so excited at the time. The surgery worked -- for about a

> > month.

> > > > > Then the prosthesis came out. I was crushed. I remember

> > crying after

> > > > > hearing music for the first time post surgery. And then it

was

> > gone.

> > > > > I had to do a lot of readjustment in my thinking -- pull

> > myself up by

> > > > > my boot straps -- and be thankful that with a hearing aid, I

> > could

> > > hear.

> > > > >

> > > > > The thing is that I didn't know if I wanted to go through

that

> > again.

> > > > > While I appreciate the fact that the doc wants help me to

hear

> > > > > better, I was really surprised, shocked after surgery. It's

my

> > fault

> > > > > that I didn't say anything to the doc about my feelings. I

> > figured it

> > > > > was a non-issue for 6 more months.

> > > > >

> > > > > Anyway, my husband and mom are really excited for and I just

> > can't

> > > > > bring myself to feel anything. I felt a little angry at

myself

> > that I

> > > > > didn't verbalize my feelings before. Believe it or not, now

I

> > feel

> > > > > " stuck with it. " I'm afraid that it won't work.

> > > > >

> > > > > So, I'm wondering about the experiences of the folks in this

> > group.

> > > > > Has reconstruction worked? Did anyone have a failed attempt,

> > which

> > > > > later worked? Have things really changed in the last 20

years

> > on the

> > > > > reconstruction front?

> > > > >

> > > > > Thanks for listening.

> > > > > Connie

> > > >

> > > > Connie,

> > > >

> > > > [WARNING: Might be a little graphic. Stop reading now if

you're

> > > squinchy.]

> > > >

> > > > I'm almost in the same boat right now. My prosthesis is in the

> > > process of

> > > > coming out. It's hanging on, but a large part of it is

sticking

> > out

> > > through

> > > > my ear drum. Ugh. I feel like I'm harboring the Alien. It's

> > still

> > > > working for the most part, I have about 30% hearing in that

ear.

> > When

> > > > yours came out, did it hurt? Was there a lot of bleeding? Any

> > > infection?

> > > > I guess I'm trying to figure out what to expect. My otologist

> > seems to

> > > > think that it could hold on for a long time. Although in the

> > last six

> > > > months, it's gone from just pressing against the TM to having

> the

> > head

> > > > totally exposed. Actually, it was kind of cool to see it on

the

> > video

> > > > screen.

> > > >

> > > > I just don't know if I want to go through another

> reconstruction.

> > > My first

> > > > one was engulfed with a recurrence of cholesteatoma and had to

> be

> > > replaced

> > > > 18 months after it was implanted. This one has been hanging on

> > for

> > > nearly

> > > > four years. I'm like you, I just don't know if I want to go

> > through

> > > this

> > > > again. My health insurance will pay for reconstruction after

> > > > reconstruction, but won't cover a single lousy hearing aid.

It's

> > not

> > > > right. I don't know if I can deal with another surgery -- if I

> > have a

> > > > choice, anyway.

> > > >

> > > > Anyone out there have experience with this? Have you had a

> > hearing aid

> > > > then later had reconstruction? How is the sound quality with

an

> > aid

> > > vs. an

> > > > implant? How often do you have to buy aid batteries and how

> > > expensive are

> > > > they?

> > > >

> > > > --

> > > > Diane Brunet

> > > > http://www.sassysuds.com

> >

December 22, 2003

Thanks ,

I think the Ontario Health Care plan pays $500 of the cost of the hearing aids, and the extended health benefits from my employer pays a portion too. Apparently they will pay 100% if the purchase occurs within 6 months of surgery... I am not sure why, but that is what the plan states...

Where are you in BC? Is the problem because of an MD shortage? I am a nurse and I worked in Emerg several years ago, and sometimes there were long waits for non emergent patients. Some of that has eased off by the proliferation of walk in clinics... I now live in Barrie which has only one hospital, and somewhere around 30,000 people who don't have a family doctor... It is a real problem here, but the clinics are pretty efficient at making sure that everyone gets seen, but I would say that it is approximately a 2 hour wait on some days... Ontario has a new thing called the "Family Health Network" and through that I was able to find a family doctor here in Barrie... but it will only help those who know about it. Doctors who participate in this program get paid more to see these patients, so some are willing to increase their case load...

My husband is waiting to see an ear specialist here, (who I think is an otologist) for vertigo, and he made his appointment in November, and can only get in to see the doctor in January... So those kind of problems are pretty much across the country I guess.

I am leaving to go North for the Holidays, I hope you and everyone on the list has a safe and happy holiday... Merry Xmas Everybody!!!