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--- Dorothy Maritato <dorothyshore@...> wrote:

> Hello all,

> I,m trying to make the decision of getting my son a

> hearing aid or to try recontruction surgery.My son

> is

> ten years old and had a CWD 2years and 4mos ago. It

> took a long time for it all to heal and dry up, but

> he

> has not had any sign of recurrence. My son has said

> he

> would rather have surgery than wear a hearing aid.

> We

> are going to the Audiologist tomorrow, to see what

> the

> options are for a hearing aid.MY QUESTION IS,has

> anyone had success with reconstruction surgery

> following CWD and destruction of most of the os

> sicle

> bones? I know that there is no guarentee, but I

> would

> like to know if any of you have been through this.

Sorry for the repeat, but the dog jumped up and hit

the send key before I was finished.

> __________________________________________________

>

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I have never had a CWD. But I have had several CWU. I had good hearing improvement my second surgery and declined by my 4th. When I asked the surgeon if I could use a hearing aid, he said in my case, it wouldn't help because the loss is conductive meaning structural damage. He said if mine was nerve damage then an aid would work. So I don't know. I have heard of BAHA aids so I know aids get used. The question is, at what point do you use one if you can? Dorothy Maritato <dorothyshore@...> wrote: --- Dorothy Maritato <dorothyshore@...> wrote:> Hello all,> I,m trying to make the decision of getting my son a> hearing aid or to try recontruction surgery.My son> is> ten years old and had a CWD 2years and 4mos ago.

It> took a long time for it all to heal and dry up, but> he> has not had any sign of recurrence. My son has said> he> would rather have surgery than wear a hearing aid.> We> are going to the Audiologist tomorrow, to see what> the> options are for a hearing aid.MY QUESTION IS,has> anyone had success with reconstruction surgery> following CWD and destruction of most of the os> sicle> bones? I know that there is no guarentee, but I> would> like to know if any of you have been through this.Sorry for the repeat, but the dog jumped up and hitthe send key before I was finished. > __________________________________________________>

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My reconstruction last about 18 yers before I needed a

hearing aid...

tom hansen

--- Dorothy Maritato <dorothyshore@...> wrote:

> Hello all,

> I,m trying to make the decision of getting my son a

> hearing aid or to try recontruction surgery.My son

> is

> ten years old and had a CWD 2years and 4mos ago. It

> took a long time for it all to heal and dry up, but

> he

> has not had any sign of recurrence. My son has said

> he

> would rather have surgery than wear a hearing aid.

> We

> are going to the Audiologist tomorrow, to see what

> the

> options are for a hearing aid.MY QUESTION IS,has

> anyone had success with reconstruction surgery

> following CWD and destruction of most of the os

> sicle

> bones? I know that there is no guarentee, but I

> would

> like to know any o

>

> __________________________________________________

>

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Just to interject, my ctoma was removed in 72 and reconstruction was done in a number of phases over the next few years. Main problem was getting the tympanic membrane to heal well. I am just now beginning to explore the possibilities of a hearing aid. My doctors at the time said it would probably last for 15 +/- years - - - I am extremely pleased that it has lasted 34! I believe there are things you can do to extend the life of the reconstruction just like extending the life of your car. Flying is hard on reconstruction, especially since many of us have non functioning Eustachian tubes. Fly as little as possible, never with a cold, and never in small un pressurized planes. No diving, and keep water out! Those were my doctors instructions, I followed them implicitly! Good luck,

Sandi

Lochner

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Dorothy.

We are also in the process of getting a hearing aid for our son, he is 5. He

had a CWD that took 2 of his ear bones and eroded the 3rd. The doc doesn't

want to reconstruct yet, he wants to make sure we are in maintanence w/ no

recurrence. He has suggested a hearing aid in the meanwhile so my son

doesn't fall too far behind in school. I'm curious about s post that

said he has conductive loss so a hearing aid wouldn't be beneficial, I know

everybody is different. My son has conductive hearing loss and the nerve

works perfectly but a hearing aid has been suggested by 2 ENT's and an

audiologist. We do plan on trying reconstruction in the future, but need a

hearing aid for now. It is a hard decision, my son is not real excited about

wearing one either. A little easier because he is only 5 and will adjust

quickly. I know a 10 year old is different, my daughter is 10 and I think

she would feel the same as your son does.

Barbara

>From: Dorothy Maritato <dorothyshore@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: reconstruction?????

>Date: Wed, 22 Mar 2006 14:37:29 -0800 (PST)

>

>Hello all,

>I,m trying to make the decision of getting my son a

>hearing aid or to try recontruction surgery.My son is

>ten years old and had a CWD 2years and 4mos ago. It

>took a long time for it all to heal and dry up, but he

>has not had any sign of recurrence. My son has said he

>would rather have surgery than wear a hearing aid. We

>are going to the Audiologist tomorrow, to see what the

>options are for a hearing aid.MY QUESTION IS,has

>anyone had success with reconstruction surgery

>following CWD and destruction of most of the os sicle

>bones? I know that there is no guarentee, but I would

>like to know any o

>

>__________________________________________________

>

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Barbara, I am not quite sure why the doc said that a hearing aid wouldn't help because of my conductive loss. I do know that the very bone structure of your ear increases sound 25 decibles which is why a cholesteatoma is nasty. If it only eroded just the hearing bones then reconstructions would be more successful I think. But no, it has to errode the mastoid too! Maybe a CWD allows the hearing aid to work better. Barbara Hatch <rdnckgypc@...> wrote: Dorothy.We are also in the process of getting a hearing aid for our son, he is 5. He had a CWD that took 2 of his ear bones and eroded the 3rd. The doc doesn't want to reconstruct yet, he wants to make sure we are in maintanence w/ no recurrence. He has suggested a hearing aid in the

meanwhile so my son doesn't fall too far behind in school. I'm curious about s post that said he has conductive loss so a hearing aid wouldn't be beneficial, I know everybody is different. My son has conductive hearing loss and the nerve works perfectly but a hearing aid has been suggested by 2 ENT's and an audiologist. We do plan on trying reconstruction in the future, but need a hearing aid for now. It is a hard decision, my son is not real excited about wearing one either. A little easier because he is only 5 and will adjust quickly. I know a 10 year old is different, my daughter is 10 and I think she would feel the same as your son does.Barbara>From: Dorothy Maritato <dorothyshore@...>>Reply-cholesteatoma >cholesteatoma >Subject: reconstruction?????>Date: Wed, 22 Mar 2006 14:37:29 -0800 (PST)>>Hello

all,>I,m trying to make the decision of getting my son a>hearing aid or to try recontruction surgery.My son is>ten years old and had a CWD 2years and 4mos ago. It>took a long time for it all to heal and dry up, but he>has not had any sign of recurrence. My son has said he>would rather have surgery than wear a hearing aid. We>are going to the Audiologist tomorrow, to see what the>options are for a hearing aid.MY QUESTION IS,has>anyone had success with reconstruction surgery>following CWD and destruction of most of the os sicle>bones? I know that there is no guarentee, but I would>like to know any o>>__________________________________________________>

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Tom, Did you have a CWD prior to reconstruction?

Dorothy

--- Tom Hansen <pingmn123@...> wrote:

> My reconstruction last about 18 yers before I needed

> a

> hearing aid...

>

>

> tom hansen

>

> --- Dorothy Maritato <dorothyshore@...> wrote:

>

> > Hello all,

> > I,m trying to make the decision of getting my son

> a

> > hearing aid or to try recontruction surgery.My son

> > is

> > ten years old and had a CWD 2years and 4mos ago.

> It

> > took a long time for it all to heal and dry up,

> but

> > he

> > has not had any sign of recurrence. My son has

> said

> > he

> > would rather have surgery than wear a hearing aid.

> > We

> > are going to the Audiologist tomorrow, to see what

> > the

> > options are for a hearing aid.MY QUESTION IS,has

> > anyone had success with reconstruction surgery

> > following CWD and destruction of most of the os

> > sicle

> > bones? I know that there is no guarentee, but I

> > would

> > like to know any o

> >

> > __________________________________________________

> >

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CWD in most cases allows for reconstuction, this is

due to there is not much that would cause the c-toma

to grow back on or to. It clears a path for sound to

do it's thing even with no hearing bones. Prior to my

reconstruction my hearing loss was about 40%, after my

recontruction it was about 90%. After 18 years my

recontruction started to fade away and my hearing

dropped down to a 60% loss, more than wht I started

with. Doing another reconstruction was not a option

the Doc want to consider so I got a hearing aid. When

properly programmed my hering loss is about 7%, which

is better than what it was before my hearing started

to go south.

tom hansen

--- robert powell <robert_powell82@...> wrote:

> Barbara,

>

> I am not quite sure why the doc said that a

> hearing aid wouldn't help because of my conductive

> loss. I do know that the very bone structure of

> your ear increases sound 25 decibles which is why a

> cholesteatoma is nasty. If it only eroded just the

> hearing bones then reconstructions would be more

> successful I think. But no, it has to errode the

> mastoid too! Maybe a CWD allows the hearing aid to

> work better.

>

>

>

> Barbara Hatch <rdnckgypc@...> wrote:

> Dorothy.

> We are also in the process of getting a hearing aid

> for our son, he is 5. He

> had a CWD that took 2 of his ear bones and eroded

> the 3rd. The doc doesn't

> want to reconstruct yet, he wants to make sure we

> are in maintanence w/ no

> recurrence. He has suggested a hearing aid in the

> meanwhile so my son

> doesn't fall too far behind in school. I'm curious

> about s post that

> said he has conductive loss so a hearing aid

> wouldn't be beneficial, I know

> everybody is different. My son has conductive

> hearing loss and the nerve

> works perfectly but a hearing aid has been suggested

> by 2 ENT's and an

> audiologist. We do plan on trying reconstruction in

> the future, but need a

> hearing aid for now. It is a hard decision, my son

> is not real excited about

> wearing one either. A little easier because he is

> only 5 and will adjust

> quickly. I know a 10 year old is different, my

> daughter is 10 and I think

> she would feel the same as your son does.

> Barbara

>

>

>

> >From: Dorothy Maritato <dorothyshore@...>

> >Reply-cholesteatoma

> >cholesteatoma

> >Subject: reconstruction?????

> >Date: Wed, 22 Mar 2006 14:37:29 -0800 (PST)

> >

> >Hello all,

> >I,m trying to make the decision of getting my son a

> >hearing aid or to try recontruction surgery.My son

> is

> >ten years old and had a CWD 2years and 4mos ago. It

> >took a long time for it all to heal and dry up, but

> he

> >has not had any sign of recurrence. My son has said

> he

> >would rather have surgery than wear a hearing aid.

> We

> >are going to the Audiologist tomorrow, to see what

> the

> >options are for a hearing aid.MY QUESTION IS,has

> >anyone had success with reconstruction surgery

> >following CWD and destruction of most of the os

> sicle

> >bones? I know that there is no guarentee, but I

> would

> >like to know any o

> >

> >__________________________________________________

> >

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Yep, in 1979 I had a Modified Radical CWD. My

reconstruction was in 1983. Both done by Nay

Doc's....

--- Dorothy Maritato <dorothyshore@...> wrote:

> Tom, Did you have a CWD prior to reconstruction?

>

> Dorothy

>

> --- Tom Hansen <pingmn123@...> wrote:

>

> > My reconstruction last about 18 yers before I

> needed

> > a

> > hearing aid...

> >

> >

> > tom hansen

> >

> > --- Dorothy Maritato <dorothyshore@...>

> wrote:

> >

> > > Hello all,

> > > I,m trying to make the decision of getting my

> son

> > a

> > > hearing aid or to try recontruction surgery.My

> son

> > > is

> > > ten years old and had a CWD 2years and 4mos ago.

> > It

> > > took a long time for it all to heal and dry up,

> > but

> > > he

> > > has not had any sign of recurrence. My son has

> > said

> > > he

> > > would rather have surgery than wear a hearing

> aid.

> > > We

> > > are going to the Audiologist tomorrow, to see

> what

> > > the

> > > options are for a hearing aid.MY QUESTION IS,has

> > > anyone had success with reconstruction surgery

> > > following CWD and destruction of most of the os

> > > sicle

> > > bones? I know that there is no guarentee, but I

> > > would

> > > like to know any o

> > >

> > >

> __________________________________________________

> > >

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It's amazing how this disease affects everybody so differently and how

different docs respond to it.

>From: robert powell <robert_powell82@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: RE: reconstruction?????

>Date: Thu, 23 Mar 2006 10:12:54 -0800 (PST)

>

>Barbara,

>

> I am not quite sure why the doc said that a hearing aid wouldn't help

>because of my conductive loss. I do know that the very bone structure of

>your ear increases sound 25 decibles which is why a cholesteatoma is nasty.

> If it only eroded just the hearing bones then reconstructions would be

>more successful I think. But no, it has to errode the mastoid too! Maybe

>a CWD allows the hearing aid to work better.

>

>

>

>Barbara Hatch <rdnckgypc@...> wrote:

> Dorothy.

>We are also in the process of getting a hearing aid for our son, he is 5.

>He

>had a CWD that took 2 of his ear bones and eroded the 3rd. The doc doesn't

>want to reconstruct yet, he wants to make sure we are in maintanence w/ no

>recurrence. He has suggested a hearing aid in the meanwhile so my son

>doesn't fall too far behind in school. I'm curious about s post that

>said he has conductive loss so a hearing aid wouldn't be beneficial, I know

>everybody is different. My son has conductive hearing loss and the nerve

>works perfectly but a hearing aid has been suggested by 2 ENT's and an

>audiologist. We do plan on trying reconstruction in the future, but need a

>hearing aid for now. It is a hard decision, my son is not real excited

>about

>wearing one either. A little easier because he is only 5 and will adjust

>quickly. I know a 10 year old is different, my daughter is 10 and I think

>she would feel the same as your son does.

>Barbara

>

>

>

> >From: Dorothy Maritato <dorothyshore@...>

> >Reply-cholesteatoma

> >cholesteatoma

> >Subject: reconstruction?????

> >Date: Wed, 22 Mar 2006 14:37:29 -0800 (PST)

> >

> >Hello all,

> >I,m trying to make the decision of getting my son a

> >hearing aid or to try recontruction surgery.My son is

> >ten years old and had a CWD 2years and 4mos ago. It

> >took a long time for it all to heal and dry up, but he

> >has not had any sign of recurrence. My son has said he

> >would rather have surgery than wear a hearing aid. We

> >are going to the Audiologist tomorrow, to see what the

> >options are for a hearing aid.MY QUESTION IS,has

> >anyone had success with reconstruction surgery

> >following CWD and destruction of most of the os sicle

> >bones? I know that there is no guarentee, but I would

> >like to know any o

> >

> >__________________________________________________

> >

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About the only thing I dont do is Scuba or Sky diving.

Love to be in the Pool and in my young and stupid

days water skied, and yes after my reconstruction. Do

my fair share of flying as well. We all react

differently to all of these.....

tom hansen

--- SDSSandie@... wrote:

> Just to interject, my ctoma was removed in 72 and

> reconstruction was done in

> a number of phases over the next few years. Main

> problem was getting the

> tympanic membrane to heal well. I am just now

> beginning to explore the

> possibilities of a hearing aid. My doctors at the

> time said it would probably last

> for 15 +/- years - - - I am extremely pleased that

> it has lasted 34! I

> believe there are things you can do to extend the

> life of the reconstruction just

> like extending the life of your car. Flying is hard

> on reconstruction,

> especially since many of us have non functioning

> Eustachian tubes. Fly as little

> as possible, never with a cold, and never in small

> un pressurized planes. No

> diving, and keep water out! Those were my doctors

> instructions, I followed

> them implicitly! Good luck,

> Sandi

>

> Lochner

>

__________________________________________________

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