Looking for input on another surgery

[Guest guest]

Hi everyone! I joined this group about 4 years ago, when my son was

5. I need to re-learn some terminology associated with cholesteatoma

since we have been away from it for awhile and maybe new procedures.

Here is our story:

Brody had his 1st c'toma removed when he was 6. For his 2nd look,

the surgeon found 2 more c'tomas and had to remove all hearing bones

which was replaced with a prosthetic bone. Two months ago, the

prosthetic bone was found lodged in his ear canal which was removed

with surgery. Now, Brody is still experiencing dizziness, headaches

and stomache aches; all of the symptoms he had before the prosthetic

bone was removed, and before the second look surgery when the 2

c'toma were found.

His last audio showed significant hearing loss and they recommend a

hearing aid. So, do we put him through a 3rd look surgery with

reconstruction? Or do we have another CAT scan which may not show

anything (which is what happened before the 2nd look)and hope for the

best? He is 9 years old now and very stressed about another

surgery. The surgeon is giving the decision for me to make. Please,

any input would be helpful at this point.

Thanks -Dee

[Guest guest]

>

> Hi everyone! I joined this group about 4 years ago, when my son

was

> 5. I need to re-learn some terminology associated with

cholesteatoma

> since we have been away from it for awhile and maybe new

procedures.

> Here is our story:

>

> Brody had his 1st c'toma removed when he was 6. For his 2nd look,

> the surgeon found 2 more c'tomas and had to remove all hearing

bones

> which was replaced with a prosthetic bone. Two months ago, the

> prosthetic bone was found lodged in his ear canal which was removed

> with surgery. Now, Brody is still experiencing dizziness,

headaches

> and stomache aches; all of the symptoms he had before the

prosthetic

> bone was removed, and before the second look surgery when the 2

> c'toma were found.

>

> His last audio showed significant hearing loss and they recommend a

> hearing aid. So, do we put him through a 3rd look surgery with

> reconstruction? Or do we have another CAT scan which may not show

> anything (which is what happened before the 2nd look)and hope for

the

> best? He is 9 years old now and very stressed about another

> surgery. The surgeon is giving the decision for me to make.

Please,

> any input would be helpful at this point.

>

> Thanks -Dee

I would certainly start with a CScan, knowing you'll probably face

another surgery if it doesn't show anything. We had a situation

where my son had a CScan a year after his 3 c'toma removal and our

local otologist said there was definintely NO c'toma. As I didn't

like his bedside manner, we sought a 2nd opinion. Looking at the

EXACT SAME FILM (which I took with me to the appointment), he saw

another c'toma and pointed it out to me on the film. My son did have

another surgery and the 4th c'toma was huge.

The point of my story is to suggest a 2nd opinion. How two doctors

saw two totally different things on the same film amazes me.

Fortunately, my " mommy instinct " didn't like our local doctor and

sought another opinion.

Best of luck to you and your son. My son, now 12, has had 6

surgeries, his first just days after his 6th birthday. If you're not

seeing a board certified otologist, I'd recommended doing so.

God bless,

Sheri

>

[Guest guest]

Hi Dee,

I think another surgery after a CAT scan would be best. Are you using

an otologist? I recently had surgery in January, and the surgery was

not bad at all. I experienced maybe light pain, if even that. Do

they do the surgery through the canal?

I think that another surgery should be done, so that your son can

regain his hearing without wearing a hearing aid. Hearing aids work,

but they are not nearly as nice as the real thing.

-Millie

[Guest guest]

Thanks Sheri

Actually, Brody is seeing the best specialist around. He said he was

a bit concerned about another CAT scan because Brody has had so many

already and it may not show anything. We were planning a

reconstructive surgery only when he gets older but since he is having

these symptoms now we thought maybe a third look and reconstruction

since he is already in surgery. But again, I wouldn't want him to go

through another surgery if there isn't a c'toma. Maybe a CAT scan

would be a good idea, then if there is something showing we would

have another look.

Thanks again Sheri

> >

> > Hi everyone! I joined this group about 4 years ago, when my son

> was

> > 5. I need to re-learn some terminology associated with

> cholesteatoma

> > since we have been away from it for awhile and maybe new

> procedures.

> > Here is our story:

> >

> > Brody had his 1st c'toma removed when he was 6. For his 2nd

look,

> > the surgeon found 2 more c'tomas and had to remove all hearing

> bones

> > which was replaced with a prosthetic bone. Two months ago, the

> > prosthetic bone was found lodged in his ear canal which was

removed

> > with surgery. Now, Brody is still experiencing dizziness,

> headaches

> > and stomache aches; all of the symptoms he had before the

> prosthetic

> > bone was removed, and before the second look surgery when the 2

> > c'toma were found.

> >

> > His last audio showed significant hearing loss and they recommend

a

> > hearing aid. So, do we put him through a 3rd look surgery with

> > reconstruction? Or do we have another CAT scan which may not show

> > anything (which is what happened before the 2nd look)and hope for

> the

> > best? He is 9 years old now and very stressed about another

> > surgery. The surgeon is giving the decision for me to make.

> Please,

> > any input would be helpful at this point.

> >

> > Thanks -Dee

>

> I would certainly start with a CScan, knowing you'll probably face

> another surgery if it doesn't show anything. We had a situation

> where my son had a CScan a year after his 3 c'toma removal and our

> local otologist said there was definintely NO c'toma. As I didn't

> like his bedside manner, we sought a 2nd opinion. Looking at the

> EXACT SAME FILM (which I took with me to the appointment), he saw

> another c'toma and pointed it out to me on the film. My son did

have

> another surgery and the 4th c'toma was huge.

>

> The point of my story is to suggest a 2nd opinion. How two doctors

> saw two totally different things on the same film amazes me.

> Fortunately, my " mommy instinct " didn't like our local doctor and

> sought another opinion.

>

> Best of luck to you and your son. My son, now 12, has had 6

> surgeries, his first just days after his 6th birthday. If you're

not

> seeing a board certified otologist, I'd recommended doing so.

>

> God bless,

> Sheri

> >

>

[Guest guest]

Yes, we have the best otologist around and he will have someone with

him that specializes in reconstruction. They would have to cut behind

the ear like before, which is difficult for my son to even think

about. I think a CAT scan first would be a good idea too.

Thanks Millie

>

> Hi Dee,

>

> I think another surgery after a CAT scan would be best. Are you

using

> an otologist? I recently had surgery in January, and the surgery was

> not bad at all. I experienced maybe light pain, if even that. Do

> they do the surgery through the canal?

> I think that another surgery should be done, so that your son can

> regain his hearing without wearing a hearing aid. Hearing aids work,

> but they are not nearly as nice as the real thing.

>

> -Millie

>

[Guest guest]

We're in exactly the same boat, unfortunately. I guess I don't see

the point of a scan if it doesn't tell anything definitive. It's

expensive and time-consuming, and when you're done you really don't

have much better information. It could probably confirm, but it can't

rule out.

I think I would (will) go for the surgery. I know it's awful, but the

symptoms seem so clear to me that I have very little doubt. I would

like to see as little additional damage done as possible.

It's just so depressing. I sincerely wish it could be me instead of

my dd-- she has just been through so much.

Lynn