Re: new member many questions!

[Guest guest]

Hi, Patty. You have come to right place to find answers. This group is

wonderful and very supportive. Welcome!

Cholesteatoma is very serious and should be treated promptly. The sooner

your son has surgery, the better. As far as costs go, Troy's surgery back

in February (which lasted about 3 hours) was around $9,000. His first

surgery, in October of 1996, which lasted for 6 1/2 hours was much more, but

I don't have the actual figure. I would see what options you have as far as

financial assistance is concerned (call the hospital and see if they have

some kind of payment plan offered to those not insured).

My son, Troy, was first diagnosed with c-toma when he was only 3 years old.

We're not sure if it was congenital, but I have a feeling it was (because

the c-toma had spread so quickly). He's had numerous surgeries since then

(he's now 8), but managed to bounce back quickly every time! Kids are

resilient, so I anticipate your son surprising you with his handling of the

situation! They are truly remarkable individuals.

As far as qualifications, if your surgeon is a neurotologist (dealing with

the nerves), that's even better (because c-toma can wrap itself around the

facial nerve and cause damage). If you meet with this surgeon and don't

feel comfortable, try looking for someone else. It's always good to have a

few opinions.

If you have additional questions or just need to vent, please let us know.

Keep us posted on Brady and may God bless you and your family.

Terri

new member many questions!

> Hello everyone! My son Brady (4) has just been diagnosed with

> congenital (they think) ctoma. His pediatrician found it in his

> right ear. We met with an ENT the same day, he acted like it was no

> big deal, did the hearing test, some lost so on to the ct scan.

> Talked with him today and looks like only one doc he will recomend to

> us in all of Memphis. So we are waiting to get an appt. with this

> surgeon. Unfortunately our insurance company is pulling out of our

> state and the new one is not going to cover any of his treatment for

> 12 months! There is no way I am going to wait to have this thing

> taken out. So could anyone here give me an idea as to the cost of

> these surgeries. Is it usually two? And is it better to have

> congenital or worse? After reading more about ctoma I have the

> feeling that this is someting that is a big deal. We are on pins and

> needles and nobody is able to tell us anything till after the

> holidays! I am so worried about my little guy! Also, what

> qualifications would you all look for in a surgeon? How rare is

> congential ctoma anyone know? Thanks to all for answering!!!! ANY

> info is appreciated. Patty

>

>

> P.S. I know God brings things together to work for good for his

> people so I know Brady will be okay, it is just so hard to get info

> about this, it's frustrating, so glad I found you all!

>

>

>

>

[Guest guest]

Hi Patty,

Check with the new insurance. This happened to me last year. The old insurance company has to give you a letter of continuing coverage ( I think that is what is it called). This letter states the date coverage started and ended. If your new insurance is going into effect right after with no lapse in coverage, that should override the pre existing clause. You will have to send this letter into your new insurance company. Check into that and see what you find out. It worked for me in Missouri.

Angie

>From: "pburse2001"

>Reply-cholesteatoma >cholesteatoma >Subject: new member many questions! >Date: Sat, 22 Dec 2001 08:39:29 -0000 > >Hello everyone! My son Brady (4) has just been diagnosed with >congenital (they think) ctoma. His pediatrician found it in his >right ear. We met with an ENT the same day, he acted like it was no >big deal, did the hearing test, some lost so on to the ct scan. >Talked with him today and looks like only one doc he will recomend to >us in all of Memphis. So we are waiting to get an appt. with this >surgeon. Unfortunately our insurance company is pulling out of our >state and the new one is not going to cover any of his treatment for >12 months! There is no way I am going to wait to have this thing >taken out. So could anyone here give me an idea as to the cost of >these surgeries. Is it usually two? And is it better to have >congenital or worse? After reading more about ctoma I have the >feeling that this is someting that is a big deal. We are on pins and >needles and nobody is able to tell us anything till after the >holidays! I am so worried about my little guy! Also, what >qualifications would you all look for in a surgeon? How rare is >congential ctoma anyone know? Thanks to all for answering!!!! ANY >info is appreciated. Patty > > >P.S. I know God brings things together to work for good for his >people so I know Brady will be okay, it is just so hard to get info >about this, it's frustrating, so glad I found you all! > Join the world’s largest e-mail service with MSN Hotmail. Click Here

[Guest guest]

> Hey Angie! Thank you for the idea, Were you on group health

coverage or individual policy? Our problem is that we are on an

individual policy and they can just about do anything to you when you

are on by yourself. I am nervous that the surgeon won't do the

surgery if he finds out about our insurance problem, but then again I

don't want to lie, because they usually do more than one surgery

right? What about swimming? That is Brady's fav. thing! Will he be

able to and what other ways is this going to affect him? Do you have

an idea how long it takes them to recover? He is in preschool, but I

dont want him going back to soon. I have a million questions and

only you guys to answer them, the surgeon is out of town till after

the holidays!! I am willing to travel to hurry up with this, do you

know of any excellent surgeons in the south? Thanks!!!!

[Guest guest]

Thank you Terri for your prompt reply. I am just so full of

questions and I can't get any answers from the surgeon till after the

holidays!! What ways is this going to change his life?? I want to

prepare him and myself. Also the dr. the ent set me up with is just

a reg. ent but he does alot of these surgeries. I cant really find

any neurotologists in memphis. I am so clueless, I need a doc. NOW.

but it looks bleak. Please pray we will find a good doc. and he can

do this asap. Thank you for being here!!!

> Hi, Patty. You have come to right place to find answers. This

group is

> wonderful and very supportive. Welcome!

>

> Cholesteatoma is very serious and should be treated promptly. The

sooner

> your son has surgery, the better. As far as costs go, Troy's

surgery back

> in February (which lasted about 3 hours) was around $9,000. His

first

> surgery, in October of 1996, which lasted for 6 1/2 hours was much

more, but

> I don't have the actual figure. I would see what options you have

as far as

> financial assistance is concerned (call the hospital and see if

they have

> some kind of payment plan offered to those not insured).

>

> My son, Troy, was first diagnosed with c-toma when he was only 3

years old.

> We're not sure if it was congenital, but I have a feeling it was

(because

> the c-toma had spread so quickly). He's had numerous surgeries

since then

> (he's now 8), but managed to bounce back quickly every time! Kids

are

> resilient, so I anticipate your son surprising you with his

handling of the

> situation! They are truly remarkable individuals.

>

> As far as qualifications, if your surgeon is a neurotologist

(dealing with

> the nerves), that's even better (because c-toma can wrap itself

around the

> facial nerve and cause damage). If you meet with this surgeon and

don't

> feel comfortable, try looking for someone else. It's always good

to have a

> few opinions.

>

> If you have additional questions or just need to vent, please let

us know.

> Keep us posted on Brady and may God bless you and your family.

>

> Terri

>

>

> new member many questions!

>

>

> > Hello everyone! My son Brady (4) has just been diagnosed with

> > congenital (they think) ctoma. His pediatrician found it in his

> > right ear. We met with an ENT the same day, he acted like it was

no

> > big deal, did the hearing test, some lost so on to the ct scan.

> > Talked with him today and looks like only one doc he will

recomend to

> > us in all of Memphis. So we are waiting to get an appt. with this

> > surgeon. Unfortunately our insurance company is pulling out of

our

> > state and the new one is not going to cover any of his treatment

for

> > 12 months! There is no way I am going to wait to have this thing

> > taken out. So could anyone here give me an idea as to the cost of

> > these surgeries. Is it usually two? And is it better to have

> > congenital or worse? After reading more about ctoma I have the

> > feeling that this is someting that is a big deal. We are on pins

and

> > needles and nobody is able to tell us anything till after the

> > holidays! I am so worried about my little guy! Also, what

> > qualifications would you all look for in a surgeon? How rare is

> > congential ctoma anyone know? Thanks to all for answering!!!! ANY

> > info is appreciated. Patty

> >

> >

> > P.S. I know God brings things together to work for good for his

> > people so I know Brady will be okay, it is just so hard to get

info

> > about this, it's frustrating, so glad I found you all!

> >

> >

> >

> >

[Guest guest]

Hi, Patty,

If your doctor performs alot of these surgeries, I'm sure he'll be fine. As

I said before, I wouldn't wait too long. It seems that c-toma can spread

rapidly, so the quicker he has the surgery, the better.

After surgery, he will have to keep his ear dry (this means putting cotton

w/vaseline in his ear when he takes a bath). We had a custom ear plug made

for Troy, but when we first used it, water got in his ear and he developed

an infection. Keeping the early completely dry is a big part of this

recovery. If your surgeon does reconstruction, as well as removing the

c-toma, your son may be able to swim a few months later (it really depends

on how well he heals). My son had many recurrences, so his reconstruction

didn't take place until he was cholesteatoma-free for about a year and a

half.

I think this disease is more frustrating for the parents. Seeing your child

suffer through this is trying, but with strong faith, you can get through

it. My son bounced back pretty quickly after each surgery and missed only a

few days of school. He's been a real trooper through it all!

We will continue to pray for your family and hope that his surgery is a

complete success! Keep us posted and may God bless you.

Terri

new member many questions!

> >

> >

> > > Hello everyone! My son Brady (4) has just been diagnosed with

> > > congenital (they think) ctoma. His pediatrician found it in his

> > > right ear. We met with an ENT the same day, he acted like it was

> no

> > > big deal, did the hearing test, some lost so on to the ct scan.

> > > Talked with him today and looks like only one doc he will

> recomend to

> > > us in all of Memphis. So we are waiting to get an appt. with this

> > > surgeon. Unfortunately our insurance company is pulling out of

> our

> > > state and the new one is not going to cover any of his treatment

> for

> > > 12 months! There is no way I am going to wait to have this thing

> > > taken out. So could anyone here give me an idea as to the cost of

> > > these surgeries. Is it usually two? And is it better to have

> > > congenital or worse? After reading more about ctoma I have the

> > > feeling that this is someting that is a big deal. We are on pins

> and

> > > needles and nobody is able to tell us anything till after the

> > > holidays! I am so worried about my little guy! Also, what

> > > qualifications would you all look for in a surgeon? How rare is

> > > congential ctoma anyone know? Thanks to all for answering!!!! ANY

> > > info is appreciated. Patty

> > >

> > >

> > > P.S. I know God brings things together to work for good for his

> > > people so I know Brady will be okay, it is just so hard to get

> info

> > > about this, it's frustrating, so glad I found you all!

> > >

> > >

> > >

> > >

[Guest guest]

Hi Patti!

I'm sorry to hear about Brady's diagnosis, especially right before

the holidays. My son, Vinny (6) was diagnosed in October and had his

surgery on November 5th. Much of what I tell you will probably be a

repeat of what Terri and others have already told you.

It is serious, and you should try to get him in to see the surgeon as

soon as possible. If they are booked and cannot get you in right

away, ask them to call you if any cancellations come up - that's what

I did. We had insurance coverage, but Vinny's surgery was around

$13,000. His surgeon was an Otologist/Neurotologist - which is what

you want. Also, he performs about 2-3 of these surgeries per week,

and has been very successful. He was able to do Vinny's surgery

(removal and reconstruction of hearing bones, etc.) in about 3.5

hours. It would take many doctors about twice that time. As far as

keeping water out of the ear, our doctor recommended silicone ear

plugs. They're pliable, and cover the canal very well without having

to put it inside it. (Also sanitary)

Please be sure to ask how often the surgeon sees patients with

cholesteatoma. It's also helpful to talk to the nurses and staff -

see what they have to say about the doctor. Most importantly, you

should feel comfortable with him/her. We were extremely comfortable

with Vinny's, he obviously knew a lot about it and was very

confident.

I hope everything works out. Keep us updated. By the way, Vinny's

was congenital -- I don't know if that's better or worse, but it had

a lot of time to grow in 6.5 years!

> Hello everyone! My son Brady (4) has just been diagnosed with

> congenital (they think) ctoma. His pediatrician found it in his

> right ear. We met with an ENT the same day, he acted like it was

no

> big deal, did the hearing test, some lost so on to the ct scan.

> Talked with him today and looks like only one doc he will recomend

to

> us in all of Memphis. So we are waiting to get an appt. with this

> surgeon. Unfortunately our insurance company is pulling out of our

> state and the new one is not going to cover any of his treatment

for

> 12 months! There is no way I am going to wait to have this thing

> taken out. So could anyone here give me an idea as to the cost of

> these surgeries. Is it usually two? And is it better to have

> congenital or worse? After reading more about ctoma I have the

> feeling that this is someting that is a big deal. We are on pins

and

> needles and nobody is able to tell us anything till after the

> holidays! I am so worried about my little guy! Also, what

> qualifications would you all look for in a surgeon? How rare is

> congential ctoma anyone know? Thanks to all for answering!!!! ANY

> info is appreciated. Patty

>

>

> P.S. I know God brings things together to work for good for his

> people so I know Brady will be okay, it is just so hard to get info

> about this, it's frustrating, so glad I found you all!