Re: reconstruct surgery

[Guest guest]

Hi Sunni,

I wouldn't rule out reconstruction until you have spoke with an

otologist. My husbands left ear has nothing left in it, the c-toma

eroded all the hearing bones and his eardrum. His ENT told him

after the second surgery that reconstruction wasn't possible. Our

ENT sent us to Portland to see an otolgist when he was diagnosed in

his right ear. To make a long story short, the otologist didn't

even look at his left ear for 5 minutes before he said he could

reconstruct. Your daughters situation may be different but there is

hope.

Michele, Group Moderator

>

>

> Hi All..

>

> Thanks Melody and Phil for responding to my post. My daughters

> eardrum had the c-toma all behind it agin in this last

surgery.Thats

> why he had to take it.He said it had come back with a vengence..He

> thought he had gotten it all in the 2nd surgery . But apparently

he

> hadnt. I think the reason he doesn't want her to play the flute

> again is because you have to use the blowing method to get it to

> make a lot of sound..That he doesn't want... As far as the

> reconstruction of the ear he told us that there wasnt any way to

do

> it. she has nothing left at all.. but Phil if you know of

somethimg

> new please let me know and I will certainly talk with him ablout

> it.. Melody you said that you had this in both ears? is that

> right? and you still have hearing? wow! that is amazing to me!! Im

> very glad that you have that I know the doctor told us she

would

> have to be fitted for an earplug. so I guess that would be to keep

> anything else happening to that ear. Thanks you guys for talking

> with me on this matter.. it is really helping me and the rest of

the

> family ..... sunni

[Guest guest]

Hi Sunni,

Yeah, lucky me, both ears. I had never even heard of ctoma until 2 years ago. I had to change doctors because my health insurance changed, and though ever other doctor I had called it "chronic swimmers ear", my new doctor didn't like what she saw and made me go to a specialist. I had about 60% hearing loss in one ear, a little worse in the other. I just learned to live with it. Then my ear doctor told me what was really going on and from reading the posts on this board, I know I am extremely lucky. He did one ear at a time, mastoidectomy, removed the ctoma, let it heal, then put prosthetics in. The last surgery was 3 weeks ago.

The scariest part of the whole thing was how evasive the ctoma turned out to be - I was so mad that no other doctor ever thought of this and I had ear probs since I was so young. I was 33 when finally someone who knew what he was looking at looked in my ears. I had this problem too where the ctoma had eroded the mastoid through the tegmen which is near my brain, but the thing he did to fix that seems to be working too. So, I think I am a success story We'll see.

I know that your daughter will most likely not hear out of that ear, but I think you will see from most people on this board that hearing loss is acceptable if the trade off is getting rid of this disease.

Sorry for the long email Its been awhile since I have talked about this. Take care and good luck!!

sunni <summer_rainstorm@...> wrote:

Hi All..Thanks Melody and Phil for responding to my post. My daughters eardrum had the c-toma all behind it agin in this last surgery.Thats why he had to take it.He said it had come back with a vengence..He thought he had gotten it all in the 2nd surgery . But apparently he hadnt. I think the reason he doesn't want her to play the flute again is because you have to use the blowing method to get it to make a lot of sound..That he doesn't want... As far as the reconstruction of the ear he told us that there wasnt any way to do it. she has nothing left at all.. but Phil if you know of somethimg new please let me know and I will certainly talk with him ablout it.. Melody you said that you had this in both ears? is that right? and you still have hearing? wow! that is amazing to me!! Im very glad that you have that

I know the doctor told us she would have to be fitted for an earplug. so I guess that would be to keep anything else happening to that ear. Thanks you guys for talking with me on this matter.. it is really helping me and the rest of the family ..... sunni

[Guest guest]

Hi Sunni

I've had this kind of reconstruction in an ear which had always been deaf. I was told years earlier that reconstruction was not possible because of problems with the Eustachian tube and then after a a CWD surgery in 2001 I was told the same thing. I had an untypical situation in that I had normal ctoma plus a rare kind that starts out in the ear canal. My ear was in a fairly bad way in that the ear canal had been eaten away, the roof of the middle ear had collapsed, the bottom of it was a hole and there were no trace of the eardrum or ossicles. I also had an exposed facial nerve and a labyrinthine fistula.

They opened the ear up and grafted over the holes and things. The second kind of ctoma was one that had burrowed into the temporal bone and it reappeared almost immediately. A second surgery was then devised which would need to be more radical still and take out as much of the surrounding ear bone as possible which would therefore need to be rebuilt. They monitered me for about a year to see wether this surgery would be feasible - it was kind of on and off since there was no guarantee that it would work. A couple of weeks before the operation the surgeon asked me if I wanted him to try and reconstruct some hearing. That took me by surprise - he said that reconstruction might not work, any recovered hearing wouldn't be very good but really I didn't have anything to lose.

At that point I was registering a 100 db loss though the residual bone conduction hearing measured 50db. Part of my problem was that I was also losing my hearing in the opposite ear which had developed a milder version of the same kind of ctoma. The doctor wanted to try and salvage some hearing; the difficulty of this resident disease meant that I wasn't supposed to use hearing aids nor could I be a candidate for BAHA.

The reconstruction built up the ear out of cartilage and used a piece of neck muscle for an eardrum and they used a titanium TORP (Total Ossicular Replacement Prothesis) in the middle ear. I also had a missing stapes footplate - that's a tiny piece of stapes attached to to the membrane that leads into the inner ear - it usually survives or is preserved by the surgeon and without it the reconstruction becomes trickier. It means they have to stick a small piston through the membrane which transfers signals to the inner ear.

Did it work? It actually did, much better than they expected. The sound is a little metallic and indistinct and I have a high degree of tinnitus but still it was amazing to get a little bit of stereo for the first time. Only one slight drawback is that I still have this strange form ctoma .

Sorry this is a bit long-winded but I hope it indicates that it is possible to do reconstruction from what would seem to be a poor situation. It probably depends to some extent how closed the Eustachian tube remains, on how much bone conduction is available and really if a BAHA might not be a better solution. And as I said before I think it depends on what the doctor is willing to try.

Phil

Hi All..Thanks Melody and Phil for responding to my post. My daughters eardrum had the c-toma all behind it agin in this last surgery.Thats why he had to take it.He said it had come back with a vengence..He thought he had gotten it all in the 2nd surgery . But apparently he hadnt. I think the reason he doesn't want her to play the flute again is because you have to use the blowing method to get it to make a lot of sound..That he doesn't want... As far as the reconstruction of the ear he told us that there wasnt any way to do it. she has nothing left at all.. but Phil if you know of somethimg new please let me know and I will certainly talk with him ablout it.. Melody you said that you had this in both ears? is that right? and you still have hearing? wow! that is amazing to me!! Im very glad that you have that I know the doctor told us she would have to be fitted for an earplug. so I guess that would be to keep anything else happening to that ear. Thanks you guys for talking with me on this matter.. it is really helping me and the rest of the family ..... sunni

[Guest guest]

Hi Michele,

Thanks for the support.. Im sorry I dont know where my mind is these

days,but our doctor is also an otologist,but believe me I will be

talking with him about the possilibity ..and make him explain to me

again why she isnt a good canidate for this..again thanks for the

support sunni

> >

> >

> > Hi All..

> >

> > Thanks Melody and Phil for responding to my post. My daughters

> > eardrum had the c-toma all behind it agin in this last

> surgery.Thats

> > why he had to take it.He said it had come back with a

vengence..He

> > thought he had gotten it all in the 2nd surgery . But apparently

> he

> > hadnt. I think the reason he doesn't want her to play the flute

> > again is because you have to use the blowing method to get it to

> > make a lot of sound..That he doesn't want... As far as the

> > reconstruction of the ear he told us that there wasnt any way to

> do

> > it. she has nothing left at all.. but Phil if you know of

> somethimg

> > new please let me know and I will certainly talk with him ablout

> > it.. Melody you said that you had this in both ears? is that

> > right? and you still have hearing? wow! that is amazing to me!!

Im

> > very glad that you have that I know the doctor told us she

> would

> > have to be fitted for an earplug. so I guess that would be to

keep

> > anything else happening to that ear. Thanks you guys for talking

> > with me on this matter.. it is really helping me and the rest of

> the

> > family ..... sunni

[Guest guest]

Hi Phil,

Thanks for the info..you know the more I read the more I want to

found out about this diease.and what can and cant be done.. its

amazing for me to read what they have done for you..it seems almost

possible and gives me hope that maybe this kind of onfo can help my

daughter...Im so glad that things have gotten better for you

Thanks again, sunni

> Hi Sunni

>

> I've had this kind of reconstruction in an ear which had always

been deaf. I was told years earlier that reconstruction was not

possible because of problems with the Eustachian tube and then after

a a CWD surgery in 2001 I was told the same thing. I had an

untypical situation in that I had normal ctoma plus a rare kind that

starts out in the ear canal. My ear was in a fairly bad way in that

the ear canal had been eaten away, the roof of the middle ear had

collapsed, the bottom of it was a hole and there were no trace of

the eardrum or ossicles. I also had an exposed facial nerve and a

labyrinthine fistula.

>

> They opened the ear up and grafted over the holes and things. The

second kind of ctoma was one that had burrowed into the temporal

bone and it reappeared almost immediately. A second surgery was then

devised which would need to be more radical still and take out as

much of the surrounding ear bone as possible which would therefore

need to be rebuilt. They monitered me for about a year to see wether

this surgery would be feasible - it was kind of on and off since

there was no guarantee that it would work. A couple of weeks before

the operation the surgeon asked me if I wanted him to try and

reconstruct some hearing. That took me by surprise - he said that

reconstruction might not work, any recovered hearing wouldn't be

very good but really I didn't have anything to lose.

>

> At that point I was registering a 100 db loss though the residual

bone conduction hearing measured 50db. Part of my problem was that I

was also losing my hearing in the opposite ear which had developed a

milder version of the same kind of ctoma. The doctor wanted to try

and salvage some hearing; the difficulty of this resident disease

meant that I wasn't supposed to use hearing aids nor could I be a

candidate for BAHA.

>

> The reconstruction built up the ear out of cartilage and used a

piece of neck muscle for an eardrum and they used a titanium TORP

(Total Ossicular Replacement Prothesis) in the middle ear. I also

had a missing stapes footplate - that's a tiny piece of stapes

attached to to the membrane that leads into the inner ear - it

usually survives or is preserved by the surgeon and without it the

reconstruction becomes trickier. It means they have to stick a small

piston through the membrane which transfers signals to the inner

ear.

>

> Did it work? It actually did, much better than they expected. The

sound is a little metallic and indistinct and I have a high degree

of tinnitus but still it was amazing to get a little bit of stereo

for the first time. Only one slight drawback is that I still have

this strange form ctoma .

>

> Sorry this is a bit long-winded but I hope it indicates that it is

possible to do reconstruction from what would seem to be a poor

situation. It probably depends to some extent how closed the

Eustachian tube remains, on how much bone conduction is available

and really if a BAHA might not be a better solution. And as I said

before I think it depends on what the doctor is willing to try.

>

> Phil

>

>

> Hi All..

>

> Thanks Melody and Phil for responding to my post. My daughters

> eardrum had the c-toma all behind it agin in this last

surgery.Thats

> why he had to take it.He said it had come back with a vengence..He

> thought he had gotten it all in the 2nd surgery . But apparently

he

> hadnt. I think the reason he doesn't want her to play the flute

> again is because you have to use the blowing method to get it to

> make a lot of sound..That he doesn't want... As far as the

> reconstruction of the ear he told us that there wasnt any way to

do

> it. she has nothing left at all.. but Phil if you know of

somethimg

> new please let me know and I will certainly talk with him ablout

> it.. Melody you said that you had this in both ears? is that

> right? and you still have hearing? wow! that is amazing to me!! Im

> very glad that you have that I know the doctor told us she

would

> have to be fitted for an earplug. so I guess that would be to keep

> anything else happening to that ear. Thanks you guys for talking

> with me on this matter.. it is really helping me and the rest of

the

> family ..... sunni

>

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