RE: Questions about 7 yr old's surgery

[Guest guest]

We use a pediatric ENT who has done a fellowship and specializes in

" little ears " .

Chloe had a big surgery last May on a Tuesday and marched down the

aisle for Kindergarten graduation on Friday. She has had a number of

tymp-mastoidectomies and is usually doing very well within the first

week.

I would ask about staying overnight. We have often not finished the

surgery until late afternoon...once it was 9 PM, so it's nice to know

you are settled and won't have to deal with a vomiting child on the

ride home, etc. We did take her home one time, and it didn't go that

great, so know we always just plan to stay one night. Also, ask if you

can have his email address in case you think of questions after you

leave the office (this has been invaluable to me!).

As for pain meds, I usually insist she take them at night the first

few nights, and she almost never uses anything in the day from day 2

on. It is just tylenol with codeine.

Chloe has had the tube in the other ear--never had any infections, but

her eustachian tubes don't drain well, so the good eardrum was

beginning to retract. This can cause a new ctoma to form, so we opted

to have longterm tubes put in. That ear has been great so far, and

we've been dealing with this for four years tomorrow (big

anniversary...) I would definitely recommend following the doc on

this.

Hope that helps. My little girl is almost 7, and in spite of all the

craziness, is living a normal life and enjoying near normal hearing

thanks to a titanium prosthesis which acts in place of her destroyed

ossicles.

On 12/17/09, broadlandsmom <cmsullivan5@...> wrote:

> Hi everyone -

> My 7 yr-old son needs to have his 1st ctoma surgery. They won't know until

> they get in there whether they will have to take out any of the ossicles.

> (The ctoma is up against them but the ENT said it might peel off.) We're

> getting a 2nd opinion tomorrow from an otologist, so hopefully after that we

> will be able to schedule the surgery soon.

> and I have a few questions.

> 1) Has anyone ever opted to have the surgery done by an ENT? Or should you

> always go with the otoligist?

> 2) What would the typical missed school time be? Seems like it could be

> anywhere from a few days to a few weeks - ?

> 3) Any key questions (other than the common sense ones about his

> experience/success rate) that we should be asking?

> 4) How painful is the recovery? I'm assuming with prescription pain meds, it

> is uncomfortable but manageable.

> 5) ENT wants to put a tube in the other ear, which has only been infected

> 2-3 times ever but has a lot of fluid right now (no sign of ctoma). Has

> anyone gone this route as a preventive measure?

> Thanks so much,

>

>

>

>

>

>

> ------------------------------------

>

>

[Guest guest]

,

Speaking from an adult whom has had a cholesteatoma I personally would opt for an excellent otologist over an ENT. I look at this way - if you needed open heart surgery would you let your general practitioner or the heart specialist perform the surgery. The otologists speciality is the ear only. It could mean fewer surgery if you use a specialist. I initially went to an ENT and had a second opinion with a otologist - This was my very first surgery ever and I had no idea what I should do so I out right asked the ENT if it were him or his child where would he go for surgery - his answer was I can perform the surgery but would go to the otologist because that is his specialty.

I know everyone is different with pain but for me I never needed a pain pill. Every now and then I had little pains inside the ear while healing but nothing that needed meds to help. The only thing I could see with a child that may be a little difficult is the whole idea of having a bandage over your ear (for a very short period), the ear feels numb for several months, you can't sleep on the ear that had surgery for a while, your ear itches inside sometimes when healing so he may be tempted to put something in the ear canal to scratch - otherwise children are normally quicker to recover than adults. After surgery for me on day 5 I felt very normal.

Welcome to our group!

From: broadlandsmom <cmsullivan5@...>cholesteatoma Sent: Thu, December 17, 2009 8:02:57 PMSubject: Questions about 7 yr old's surgery

Hi everyone -My 7 yr-old son needs to have his 1st ctoma surgery. They won't know until they get in there whether they will have to take out any of the ossicles. (The ctoma is up against them but the ENT said it might peel off.) We're getting a 2nd opinion tomorrow from an otologist, so hopefully after that we will be able to schedule the surgery soon.and I have a few questions. 1) Has anyone ever opted to have the surgery done by an ENT? Or should you always go with the otoligist?2) What would the typical missed school time be? Seems like it could be anywhere from a few days to a few weeks - ?3) Any key questions (other than the common sense ones about his experience/success rate) that we should be asking?4) How painful is the recovery? I'm assuming with prescription pain meds, it is uncomfortable but manageable.5) ENT wants to put a tube in the other ear, which has only been infected 2-3 times ever but has a lot of fluid

right now (no sign of ctoma). Has anyone gone this route as a preventive measure?Thanks so much,

[Guest guest]

Hello ,

I am sorry that your son is having to go through this challenge but I am glad you found us.

1.My recommendation is to go with the otologist so long as he/she is very experienced. Your best option of being able to save the ossicles is the first surgery and you want someone that is really experienced and knows what they are doing. (My son's first 2 surgeries were done by a local ENT who is a very nice man but did not have a lot of experience with c-toma although probably more than anyone else locally. We were ignorant of the disease and the process and have learned a lot over the years.)

2.My son never missed more than a week of school but each case is individual. Prepare your son and his friends for his "bionic ear". My son's friends thought he was so cool with his bandages.

3. Don't hesitate to call the Dr. before and after with questions. They should offer a phone # to call with questions if needed. I found them very accommodating and eager to help which always eased my mind.

4.My son has had 5 surgeries and pain was never a major issue. He would take the pain meds for 2 or 3 days then taper off. I can safely say the dread and the pain is much worse for us parents as the kids take it in stride and bounce back easily.

5. I have been on this board for about 10 years and have read many times where the docs do preventative tubes. I know you will be sure to ask the otologist their opinion on this also.

My best to you and your son. You have come to a good place for information. There are many experienced people on this board.

Audrey

Questions about 7 yr old's surgery

Hi everyone -

My 7 yr-old son needs to have his 1st ctoma surgery. They won't know until they get in there whether they will have to take out any of the ossicles. (The ctoma is up against them but the ENT said it might peel off.) We're getting a 2nd opinion tomorrow from an otologist, so hopefully after that we will be able to schedule the surgery soon.

and I have a few questions.

1) Has anyone ever opted to have the surgery done by an ENT? Or should you always go with the otoligist?

2) What would the typical missed school time be? Seems like it could be anywhere from a few days to a few weeks - ?

3) Any key questions (other than the common sense ones about his experience/success rate) that we should be asking?

4) How painful is the recovery? I'm assuming with prescription pain meds, it is uncomfortable but manageable.

5) ENT wants to put a tube in the other ear, which has only been infected 2-3 times ever but has a lot of fluid right now (no sign of ctoma). Has anyone gone this route as a preventive measure?

Thanks so much,

[Guest guest]

Hi !

You've found the perfect place for information and support! I am so thankful to

have found this board when my 8yr old son was diagonsed last January. His

C-toma was up against his ossicles, had destroyed the back of his eardrum, and

was tight against the canal the facial nerve lays in. His surgery was about 3.5

hours and he missed 3 school days plus the weekend, but by day 3 he was crawling

the walls and keeping him still was a challenge! Kids bounce back so fast! He

used the pain meds the first 2 nights then just regular Tylenol as needed...

Definately get a second opinion. I love our ENT, but he admited it was not

something he did often, let alone on kids, and referred us to a great

Neurotologist at a medical center nearby. I love our surgeon even more!! Wyatt

has had 4 surgeries since the 'big one' in Feb 09. It been a long year!

The C-Toma didnt damage the ossicles, but they did have to take them apart to

'clean' it from them-- and as it now seems, with his continued hearing loss, the

ossicle chain reattachement part may not have worked. We are considering a

titanium prosthetic, but that will be down the road as long as we can put it

off-- or unless there is a recurrance of the C-toma. Wyatt plays alot of

sports, and i guess with the prosthetic, contact sports are not advised. So for

now, he will use a hearing aid (which we get on Monday!) I would ask them

specifically about the ossicle cleaning piece and how they will reattache them

if they need to take them apart...

Wyatts left ear is still perfed from his original set of tubes in 2002!! so we

just leave it alone. Since it is clear that his eustation tubes dont function,

its best to leave it vented. He has good hearing in that ear, we'll deal with

patching the hole when hes older too! The 'bad' ear, as he calls it.. is also

perfed from the tube they put in in August that had fallen out by October. They

will watch it closely for regrowth as it was a little ragged around the edges...

If you son's left ear has fluid but isnt causing problems.. I'd have them put

the tube in anyway!!!!! Our experience with fluid filled drums has never been

good and even if not infected, i dont trust it!!

Good luck with his surgery... which ever doctor you choose.. and keep us posted!

~diane

>

> Hi everyone -

> My 7 yr-old son needs to have his 1st ctoma surgery. They won't know until

they get in there whether they will have to take out any of the ossicles. (The

ctoma is up against them but the ENT said it might peel off.) We're getting a

2nd opinion tomorrow from an otologist, so hopefully after that we will be able

to schedule the surgery soon.

> and I have a few questions.

> 1) Has anyone ever opted to have the surgery done by an ENT? Or should you

always go with the otoligist?

> 2) What would the typical missed school time be? Seems like it could be

anywhere from a few days to a few weeks - ?

> 3) Any key questions (other than the common sense ones about his

experience/success rate) that we should be asking?

> 4) How painful is the recovery? I'm assuming with prescription pain meds, it

is uncomfortable but manageable.

> 5) ENT wants to put a tube in the other ear, which has only been infected 2-3

times ever but has a lot of fluid right now (no sign of ctoma). Has anyone gone

this route as a preventive measure?

> Thanks so much,

>

>

[Guest guest]

Ditto

to all the responses thus far regarding recovery.  Ask his teacher if it is

okay that he wear a jacket with a hood, in case he doesn’t want his classmates

staring at his incision.

Go

with the specialist.  Even if the ENT says they do these surgeries a couple a

month, the specialist “specializes†in this.  No question about it.

Good

luck!

e

From:

cholesteatoma [mailto:cholesteatoma ] On

Behalf Of aksmorrison@...

Sent: Friday, December 18, 2009 5:27 AM

cholesteatoma

Subject: Re: Questions about 7 yr old's surgery

Hello ,

I am sorry that your son is having to go through this challenge but I am glad

you found us.

1.My recommendation is to go with the otologist so long as he/she is very

experienced. Your best option of being able to save the ossicles is the first

surgery and you want someone that is really experienced and knows what they are

doing. (My son's first 2 surgeries were done by a local ENT who is a very nice

man but did not have a lot of experience with c-toma although probably more

than anyone else locally. We were ignorant of the disease and the process and

have learned a lot over the years.)

2.My son never missed more than a week of school but each case is individual.

Prepare your son and his friends for his " bionic ear " . My son's

friends thought he was so cool with his bandages.

3. Don't hesitate to call the Dr. before and after with questions. They should

offer a phone # to call with questions if needed. I found them very

accommodating and eager to help which always eased my mind.

4.My son has had 5 surgeries and pain was never a major issue. He would take

the pain meds for 2 or 3 days then taper off. I can safely say the dread and

the pain is much worse for us parents as the kids take it in stride and bounce

back easily.

5. I have been on this board for about 10 years and have read many times where

the docs do preventative tubes. I know you will be sure to ask the otologist

their opinion on this also.

My best to you and your son. You have come to a good place for information.

There are many experienced people on this board.

Audrey

Questions about 7 yr old's surgery

Hi everyone -

My 7 yr-old son needs to have his 1st ctoma surgery. They won't know until they

get in there whether they will have to take out any of the ossicles. (The ctoma

is up against them but the ENT said it might peel off.) We're getting a 2nd

opinion tomorrow from an otologist, so hopefully after that we will be able to

schedule the surgery soon.

and I have a few questions.

1) Has anyone ever opted to have the surgery done by an ENT? Or should you

always go with the otoligist?

2) What would the typical missed school time be? Seems like it could be

anywhere from a few days to a few weeks - ?

3) Any key questions (other than the common sense ones about his experience/success

rate) that we should be asking?

4) How painful is the recovery? I'm assuming with prescription pain meds, it is

uncomfortable but manageable.

5) ENT wants to put a tube in the other ear, which has only been infected 2-3

times ever but has a lot of fluid right now (no sign of ctoma). Has anyone gone

this route as a preventive measure?

Thanks so much,

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