Re: 's Story...very lengthy

[Guest guest]

Our surgeon explained to us that, when the child is born, the middle ear is already the same size it will be when the child grows to be an adult. Amazing, isn't it? Because I had asked how fast our son would grow out of a reconstruction done at the age of 5. The answer is never! (I gather from this list that it may wear out for other reasons, but there won't be any problems due to the middle ear getting bigger as the child grows.)

[Guest guest]

Our BIG DECISION right now is: Should we be planning the canalplasty and opening the cavity? Or, just remove the c-toma and close the cavity? What is the best thing, or the most common thing to do? (I have to keep reminding myself that there is a slim chance that it's not the cyst at all.) After reading some posts, I'm just so fearful of the return of a cyst, and what would be easier on for another removal. I even hate the thought of her having to have repeated CT's...she has already had 3 fine cut CT's for the evaluations.

Hi

There hasn't been much discussion of ear canal stenosis on this site, so I'm not sure how prevalent it is amongst ctoma sufferers. I certainly had this condition early on in life, though not sure whether it was congenital or the result of an early head trauma. Along with eustachain tube problems, it probably contributed to a life time of ear disease and and increasing deafness. Fortunately I managed to avoid ctoma for a few decades. I was once told that stenosis was almost as if the ear canal was acting like a wound - it keeps narrowing and closing up. I've also heard that it does predispose one to canal ctoma - a form of the disease that I've been dealing with for the past few years. As much as anything, an unusually narrowed ear canal will always make it very difficult to see into the ear to detect any ear disease.

I wonder if there is some limitation on the amount of restructuring they can do with 's ear because she is so young and the ear hasn't yet reached it's full size? I understand your reluctance to want to subject to more radical surgery and it is probably a question of how best she can avoid future ear trouble. I really believe you'll have to trust the doctor to gude you on this one.

Phil

[Guest guest]

> Our BIG DECISION right now is:

> Should we be planning the canalplasty and opening the cavity? Or,

> just remove the c-toma and close the cavity? What is the best

thing,

> or the most common thing to do? (I have to keep reminding myself

that

> there is a slim chance that it's not the cyst at all.) After

reading

> some posts, I'm just so fearful of the return of a cyst, and what

> would be easier on for another removal. I even hate the

thought

> of her having to have repeated CT's...she has already had 3 fine

cut

> CT's for the evaluations.

>

> Hi

>

> There hasn't been much discussion of ear canal stenosis on this

site, so I'm not sure how prevalent it is amongst ctoma sufferers. I

certainly had this condition early on in life, though not sure

whether it was congenital or the result of an early head trauma.

Along with eustachain tube problems, it probably contributed to a

life time of ear disease and and increasing deafness. Fortunately I

managed to avoid ctoma for a few decades. I was once told that

stenosis was almost as if the ear canal was acting like a wound - it

keeps narrowing and closing up. I've also heard that it does

predispose one to canal ctoma - a form of the disease that I've been

dealing with for the past few years. As much as anything, an

unusually narrowed ear canal will always make it very difficult to

see into the ear to detect any ear disease.

>

> I wonder if there is some limitation on the amount of restructuring

they can do with 's ear because she is so young and the ear

hasn't yet reached it's full size? I understand your reluctance to

want to subject to more radical surgery and it is probably a

question of how best she can avoid future ear trouble. I really

believe you'll have to trust the doctor to gude you on this one.

>

> Phil

Thanks for your response.

Since I feel that we as parents failed with the decision of 's

1st surgery and it turned out to be such a disaster...that's why I'm

so paranoid knowing we have to make a final decision soon with this

next surgery. I will be consulting Dr J next week. I just want to

know as much as I can by then about the different options.

[Guest guest]

> Our surgeon explained to us that, when the child is born, the

middle ear is

> already the same size it will be when the child grows to be an

adult. Amazing,

> isn't it? Because I had asked how fast our son would grow out of a

> reconstruction done at the age of 5. The answer is never! (I gather

from this list that

> it may wear out for other reasons, but there won't be any problems

due to the

> middle ear getting bigger as the child grows.)

That is very interesting...I had never heard that.

After the surgery in July 2001 when Dr J removed the cyst, he gave us

the little bit of hope by saying we just needed to give it some time

for the bones and all inside middle ear to maybe move back into place-

--the cyst had pushed everything aside. I know it sounded good to us.

But the newest CT doesn't show anything different.

I really don't understand why almost everything I'm reading talks

about reconstruction usually about a year after the removal. There

must have been major damage inside 's middle ear and we were not

told specifics. I want to request a copy of 's records to read

the surgical notes.

[Guest guest]

(I gather from this list that it may wear out for other reasons, but there won't be any problems due to the middle ear getting bigger as the child grows.) Not that it grows - the middle ear space is only about the size of the top of thumb I'm told - but my surgeon did tell me that the ear will change shape slightly over time. That way the precise tension needed for a prosthesis to work effectively is lost. They don't last for ever, he said. It can also, obviously, be dislodged for other reasons.

Phil

[Guest guest]

> (I gather from this list that it may wear out for other reasons,

but there won't be any problems due to the middle ear getting bigger

as the child grows.)

>

> Not that it grows - the middle ear space is only about the size of

the top of thumb I'm told - but my surgeon did tell me that the ear

will change shape slightly over time. That way the precise tension

needed for a prosthesis to work effectively is lost. They don't last

for ever, he said. It can also, obviously, be dislodged for other

reasons.

>

> Phil

I know what you mean...We were told that about the prosthesis that

was placed in 's left ear. Also, that the canalplasty may have to

be redone later as she grows. Dr J made it a little extra big to

allow for some growing.

[Guest guest]

Dear ,

Please don't feel guilty so much for the past. You didn't have an

experience with such a situation before to know what to do... How

could you predict the outcome? How could you know about facial

monitor or other details if even doctors who are so knowledgable

don't pay enough attention to?

Please concentrate more on the upcoming surgery, I am sure you got a

lot of information on this website. You should read, ask questions,

see which options make more sense and not be afraid to demand

detailed explanations about various options from the doctor...

Strangely, I feel so much connected to people on this website...

Good luck, I wish your little daughter the best of luck and great

doctor in facing such a difficult time in her childhood.. I can

imagine how you feel right now. Your daughter is already lucky to

have such a mother who cares so much...

kara

> Hi--I joined your group about a week ago...I was so elated when I

> found you, 'cause I knew we would get the " best insight " from

those

> that had experienced this situation. I've already spent numerous

> hours researching and I have " many miles to go. " I would love to

be

> able to go thru the 10,000 messages...that would be many miles,

huh?

>

> This is very lengthy...just thought the history would help you

> understand our situation. If you want to skip the history...look

> toward the bottom of this message. The decision to be made very

soon

> involves the possible removal of c-toma and is it better to " open

the

> cavity " and do canalplasty, or just leave the " cavity closed " .

>

> My daughter, (6 years old), was diagnosed at the age of

18months

> with Treacher Syndrome. In appearance she is very mildly

> affected, and does have some hearing problems. She tested mild-to-

> moderate(hearing loss)and her right ear canal was much narrower

than

> her left side.

>

> January 1999--1st surgery--Dr wanted to " open up her right ear

canal

> to allow more volume " (canalplasty). She was going to be fitted

with

> hearing aids. This surgery was totally unsuccessful! The biggest

> scare of our life was when the Dr told us he had either " stretched

or

> bruised " her facial nerve. Slowly that improved, but never fully

> returned to normal. I can still see evidence of this in the way

her

> eyes react such as in bright sunlight or when she cries. Also,

within

> 3 weeks, the ear canal started restenosing. The Dr admitted 2

things

> at the 3-week check: He wished he had made an ear mold for her to

> sleep in to prevent the canal from closing, and also...if he could

do

> the surgery again he would use a facial nerve monitor. Wow...who

> would have ever thought he wouldn't use it in the 1st place? A

child

> with TCS does not have the facial nerve placement like a typical

> child. How stupid was he?? I thought I had done my research and

> checked this Dr out. But, I still feel so much blame 'cause it

> apparently wasn't enough.

> BTW...this is a well-known Doctor at a Children's Hospital

(Alabama).

>

> In September 2001, we were told that 's right ear canal had

> completely grown together and this would result in a very bad

> situation for the ear. The Dr did not mention the word

cholesteatoma,

> but of course we have since learned the term. I started looking

for

> more answers to 's ear situation. I was already a member of a

TCS

> Group, and heard of this wonderful Dr in Virginia--Dr.

> Jahrsdoerfer. I researched him on my own, and knew that we must

make

> arrangements for him to evaluate 's ears. I forwarded CT's to

him

> and we were scheduled for surgery summer 2002.

>

> July 2002--2nd surgery--Dr. Jahrsdoerfer's plan was to remove the

c-

> toma, do middle ear reconstruction(whatever was req'd), and

perform

> the canalplasty using a skin graft from her upper inner arm. After

3

> 1/2 hours he came to the Waiting Room and told us the c-toma was

much

> more involved and all he could do at that time was remove the cyst

> and close up the ear. He said there was only a very tiny amount of

> aeration. He likes to see a certain amount for middle ear work b4

he

> thinks it would be successful. We were very sad, but we were given

> some hope that with time, the middle ear would probably improve

> enough for reconstruction. He said the cyst had pushed the ear

bones

> off to the side. I'm not very clear on the damage done...such as

to

> mastoid or bones.

>

> In the Spring of 2003, Dr. Jahrsdoerfer wanted to see updated CT's

to

> evaluate 's ear situation. After reviewing them, he still felt

> that her right ear didn't have enough aeration, but her left ear

> looked very good for middle ear work and canalplasty with skin

graft.

>

> July 2003--3rd surgery--Dr. J did ossiculoplasty(sp?), new ear

drum

> and canalplasty. Everything went great!! was hearing better

that

> evening of her surgery, even with all the packing in her ear. At

the

> 1month post-op, her hearing test was in the normal range. We were

> very excited.

>

> had had a fluid problem(left ear), and a tube was placed

> recently. Dr J recommended an Otologist/Neurotolgist for us to see

> close to home...Dr. Rodgers. Dr. Rodgers got the approval from Dr.

J

> b4 placing the " tube " .

>

> I will try to get to the whole point of this Introduction...sorry

it

> has gotten so lengthy.

>

> This spring Dr J announced he would be retiring this summer...he

> turns 74 this year. We were very saddened by the news. And, just

so

> thankful for what he had already done for . We think

the " world

> of him " ...Can you tell?

>

> So...we didn't want to put off him evaluating her right ear again

for

> reconstruction and canalplasty. He sent updated CT's and called to

> say that it wasn't good news. The CT showed " soft-tissue density "

> just as it had in the earlier CT when it turned out to be a c-

> toma...there didn't appear to be any " increased modeling of the

bone "

> which was a good sign...and the aeration was the same--tiny bit

near

> the eu tube...so not a candidate for middle ear work.

>

> I was extremely upset. I was prepared for him to say either the

ear

> was " operable or not operable " for hearing. The mention of the c-

> toma took me by such surprise that I wasn't prepared to ask

questions

> about it. He did say there is a slim chance that it's not the c-

toma,

> only fatty tissue and whatever.

>

> I knew very little about c-tomas that day he called, but the

question

> did come to mind that if he could " open the cavity " then it might

not

> happen again. I was just thinking it's due to the closed cavity

the

> the reason it's happening. (I think the surgery in Jan 1999 set

this

> bad situation up in 's ear.) He had said that Dr. Rodgers(near

> home)would be qualified to remove the cyst if that's what we

wanted,

> but if we wanted him to open up the cavity that he could do that,

and

> do the skin graft for the canal, too.

>

> Dr. Rodgers opinion is: If the " soft tissue density " is Not a c-

toma,

> then he would recommend leaving the area closed. If it Is a c-

toma,

> then he said it might be a good idea to open cavity and do the

> canalplasty...he feels the best place for that would be with Dr J.

He

> knows that is his expertise.

>

> is scheduled for surgery on March 17th with Dr J. I've had

that

> appt for a while just in case we needed it. That is near our

Spring

> Break and just thought it might be a little easier to make the

plans

> and travel...we have 2 other children, also. If a canalplasty is

done

> then it would require 3 trips(surgery, and 2 follow-up)...600

> miles...9 hours on the road.

>

> Our BIG DECISION right now is:

> Should we be planning the canalplasty and opening the cavity? Or,

> just remove the c-toma and close the cavity? What is the best

thing,

> or the most common thing to do? (I have to keep reminding myself

that

> there is a slim chance that it's not the cyst at all.) After

reading

> some posts, I'm just so fearful of the return of a cyst, and what

> would be easier on for another removal. I even hate the

thought

> of her having to have repeated CT's...she has already had 3 fine

cut

> CT's for the evaluations.

>

> Sorry again for being lengthy. I look forward to being a part of

your

> Group.

>

> Thank you for reading(if you made it this far),

> and Peace to all,

>

[Guest guest]

> Dear ,

> Please don't feel guilty so much for the past. You didn't have an

> experience with such a situation before to know what to do... How

> could you predict the outcome? How could you know about facial

> monitor or other details if even doctors who are so knowledgable

> don't pay enough attention to?

> Please concentrate more on the upcoming surgery, I am sure you got

a

> lot of information on this website. You should read, ask questions,

> see which options make more sense and not be afraid to demand

> detailed explanations about various options from the doctor...

> Strangely, I feel so much connected to people on this website...

>

> Good luck, I wish your little daughter the best of luck and great

> doctor in facing such a difficult time in her childhood.. I can

> imagine how you feel right now. Your daughter is already lucky to

> have such a mother who cares so much...

> kara

>

Thanks for your kind words...

[Guest guest]

---,

Please know I will be praying for your little . You

have come to a great place for support. Please don't be so hard on

yourself & try to let go of any guilt you feel. When I started my

journey w/ c-toma, neither I or my mother had a clue as to how to

best deal w/ it. After 20 plus surgeries for removals of c-toma in

both ears & all it entails, I have learned something new after every

single surgery. I have been fighting this for 36 years & it was not

until my last surgery 4 months ago that I even knew there was such a

thing as a facial nerve moniter !!!!!! I was totally dumbfounded to

say the least!!!! When I first joined this group 4 months ago I

thought I was fairly knowledgeable about c-toma, the removal

process, the reconstructions, & etc. But let me say I discovered in

a quick minute, that what I thought I knew did not come close to

what I have learned from the good folks in this group. I can only

wish I could help the others in this group as much as they have

helped me. Take notes of all the information you get to 's

doctor to discuss & if the doctor is a good one then he should be

more than happy to explain & inform you of all your questions.

You were not at fault........how can you have been at

fault when all you have done is what the doctors have told you to do?

kimi

In cholesteatoma , " asides3 " <asides3@y...> wrote:

>

> > Dear ,

> > Please don't feel guilty so much for the past. You didn't have

an

> > experience with such a situation before to know what to do...

How

> > could you predict the outcome? How could you know about facial

> > monitor or other details if even doctors who are so knowledgable

> > don't pay enough attention to?

> > Please concentrate more on the upcoming surgery, I am sure you

got

> a

> > lot of information on this website. You should read, ask

questions,

> > see which options make more sense and not be afraid to demand

> > detailed explanations about various options from the doctor...

> > Strangely, I feel so much connected to people on this website...

> >

> > Good luck, I wish your little daughter the best of luck and

great

> > doctor in facing such a difficult time in her childhood.. I can

> > imagine how you feel right now. Your daughter is already lucky

to

> > have such a mother who cares so much...

> > kara

> >

>

> Thanks for your kind words...

>

[Guest guest]

Hi ,

It sounds like the Virginia doc has been right on in the past. I

would go with his recommendation. If this is a Ctoma, you don't want

it sitting in there festering. Leaving the cavity open will mean that

the docs can watch her closely and can keep her ear cleaner and more

like catch and possibly prevent the formation of another ctoma.

You and are very courageous. You sound like a great Mom!

Connie

> > > Dear ,

> > > Please don't feel guilty so much for the past. You didn't have

> an

> > > experience with such a situation before to know what to do...

> How

> > > could you predict the outcome? How could you know about facial

> > > monitor or other details if even doctors who are so knowledgable

> > > don't pay enough attention to?

> > > Please concentrate more on the upcoming surgery, I am sure you

> got

> > a

> > > lot of information on this website. You should read, ask

> questions,

> > > see which options make more sense and not be afraid to demand

> > > detailed explanations about various options from the doctor...

> > > Strangely, I feel so much connected to people on this website...

> > >

> > > Good luck, I wish your little daughter the best of luck and

> great

> > > doctor in facing such a difficult time in her childhood.. I can

> > > imagine how you feel right now. Your daughter is already lucky

> to

> > > have such a mother who cares so much...

> > > kara

> > >

> >

> > Thanks for your kind words...

> >

[Guest guest]

I'm totally amazed at the courage and support I've seen with this

Group. It's just " remarkable " . I know whatever problems we are facing

things could always be worse. We are very thankful people. I'm so

glad I found you all!!

> > > Dear ,

> > > Please don't feel guilty so much for the past. You didn't have

> an

> > > experience with such a situation before to know what to do...

> How

> > > could you predict the outcome? How could you know about facial

> > > monitor or other details if even doctors who are so

knowledgable

> > > don't pay enough attention to?

> > > Please concentrate more on the upcoming surgery, I am sure you

> got

> > a

> > > lot of information on this website. You should read, ask

> questions,

> > > see which options make more sense and not be afraid to demand

> > > detailed explanations about various options from the doctor...

> > > Strangely, I feel so much connected to people on this website...

> > >

> > > Good luck, I wish your little daughter the best of luck and

> great

> > > doctor in facing such a difficult time in her childhood.. I can

> > > imagine how you feel right now. Your daughter is already lucky

> to

> > > have such a mother who cares so much...

> > > kara

> > >

> >

> > Thanks for your kind words...

> >