RE: Parents - a happy story: It's GONE!

[Guest guest]

Thanks for a great story. I have heard of Dr. Eavy and was originally going to travel from Florida to Mass. to see him. Best of luck to you and your son!

Parents - a happy story: It's GONE!

Hi everyone. I just read through the congenital posts. Wow.Anyway, I thought I would share with other parents that my son's (congenital) c-toma, after 6 surgeries, is finally nowhere to be found! He's DONE!We struggled with how to proceed after the first two surgeries (in Kindergarten) showed an aggressive c-toma that didn't want to quit, but our surgeon had advised us that modified canal wall up (CWU) (or as he called it, a "window" method) had the best hearing result, so we stuck with that. My son had a TORP put in during the second surgery but his hearing was still pretty lousy. The surgeon wanted to do surgeries every 6 months, and the 1st 3 were six months apart, but the 3rd surgery showed very reduced regrowth and we decided, for the sake of our child, to "only" do surgeries 12 months apart instead because 6 months apart is too disruptive for such a young child, and plus, they're expensive! His hearing bones were already completely gone so ... what's the urgency? The surgeon was not happy about this, but guess what? 4th surgery showed only a "very small" regrowth, so we were very happy we didn't disrupt our son's life at the 6 month mark for that. The 5th surgery showed a regrowth so small the surgeon said he'd have missed it at the 6 month mark (yay for mom and dad!). His hearing result after the 5th surgery was fantastic -- great hearing! So we were nervous about having to go back in, but without any other way to monitor regrowth, it was the only option. The 6th surgery we wanted to push out even further, to 15 months, but the surgeon had resigned from our hospital to go to Vanderbilt and thus we went with him one last time before his departure, at the 12 month mark. The result? NO REGROWTH! Wahoo!!!!! And his hearing was just checked again at the 3-month-post-op mark, and it's as good as it was before surgery. Unbelievably great!It was a long road, starting before kindergarten and ending (sort of) only now, five years later, in 4th grade. We pray his hearing stays good and that he'll never need another surgery. And, since his eardrum and canal wall are all intact, we will rejoice to see him swimming with his friends as the years go by. I would like to say to you parents, hang in there. If you are trying to keep your child's canal wall up for reasons of hearing or swimming or other of life's necessities, your child might have to endure more surgeries ... or not. No one can say for certain. Our surgeon was ready to do what we wanted but advised that even CWD did not promise no regrowth. So we stuck to the plan. Once a year at most. Push it out if it seemed reasonable given the size of the regrowth. And then if it got to be so many years that he was old enough to really know whether he was willing to sacrifice swimming and hearing, he could make that decision. We wanted to keep him whole if possible. And we are very glad.Anyone in the Nashville area, you have Dr. Roland Eavey coming your way. Former head of pediatric otology at Mass. Eye & Ear. World renowned. All I can say is, I'm glad we don't have another necessary surgery. I don't know what we'd do without him!Best to all of you, and to anyone reading this who is personally suffering c-toma. Do your research, talk to your doctor, trust your gut. :-)

[Guest guest]

I am so happy to hear about your son's outcome. It must be a huge relief

to you and your family. Thank you for sharing your story as it is an

inspiration to many of us.

Also, I would like to clarify a few misconceptions regarding CWD for

those who will require the surgery:

1. You are able to swim after having a CWD (radical mastoidectomy) using

ear plugs that are fit to your ears. The only restriction I am aware of

is that you can't scuba dive.

2. The lack of hearing resulting from a CWD can be improved a tremendous

amount with a hearing aid. You do not need to have the inner ear bones

or an eardrum to greatly enhance your hearing as long as the nerve is

intact.

I hope this information is helpful to those who require the CWD

procedure. And again, I am so happy for your son's outcome.

Peace,

Cheryl

>

> Hi everyone. I just read through the congenital posts. Wow.

>

> Anyway, I thought I would share with other parents that my son's

> (congenital) c-toma, after 6 surgeries, is finally nowhere to be

> found! He's DONE!

>

> We struggled with how to proceed after the first two surgeries (in

> Kindergarten) showed an aggressive c-toma that didn't want to quit,

> but our surgeon had advised us that modified canal wall up (CWU) (or

> as he called it, a " window " method) had the best hearing result, so

> we stuck with that. My son had a TORP put in during the second

> surgery but his hearing was still pretty lousy. The surgeon wanted

> to do surgeries every 6 months, and the 1st 3 were six months apart,

> but the 3rd surgery showed very reduced regrowth and we decided, for

> the sake of our child, to " only " do surgeries 12 months apart

> instead because 6 months apart is too disruptive for such a young

> child, and plus, they're expensive! His hearing bones were already

> completely gone so ... what's the urgency? The surgeon was not

> happy about this, but guess what? 4th surgery showed only a " very

> small " regrowth, so we were very happy we didn't disrupt our son's

> life at the 6 month mark for that. The 5th surgery showed a

> regrowth so small the surgeon said he'd have missed it at the 6

> month mark (yay for mom and dad!). His hearing result after the 5th

> surgery was fantastic -- great hearing! So we were nervous about

> having to go back in, but without any other way to monitor regrowth,

> it was the only option. The 6th surgery we wanted to push out even

> further, to 15 months, but the surgeon had resigned from our

> hospital to go to Vanderbilt and thus we went with him one last time

> before his departure, at the 12 month mark. The result? NO

> REGROWTH! Wahoo!!!!! And his hearing was just checked again at the

> 3-month-post-op mark, and it's as good as it was before surgery.

> Unbelievably great!

>

> It was a long road, starting before kindergarten and ending (sort

> of) only now, five years later, in 4th grade. We pray his hearing

> stays good and that he'll never need another surgery. And, since

> his eardrum and canal wall are all intact, we will rejoice to see

> him swimming with his friends as the years go by.

>

> I would like to say to you parents, hang in there. If you are

> trying to keep your child's canal wall up for reasons of hearing or

> swimming or other of life's necessities, your child might have to

> endure more surgeries ... or not. No one can say for certain. Our

> surgeon was ready to do what we wanted but advised that even CWD did

> not promise no regrowth. So we stuck to the plan. Once a year at

> most. Push it out if it seemed reasonable given the size of the

> regrowth. And then if it got to be so many years that he was old

> enough to really know whether he was willing to sacrifice swimming

> and hearing, he could make that decision. We wanted to keep him

> whole if possible. And we are very glad.

>

> Anyone in the Nashville area, you have Dr. Roland Eavey coming your

> way. Former head of pediatric otology at Mass. Eye & Ear. World

> renowned. All I can say is, I'm glad we don't have another

> necessary surgery. I don't know what we'd do without him!

>

> Best to all of you, and to anyone reading this who is personally

> suffering c-toma. Do your research, talk to your doctor, trust your

> gut. :-)

>

[Guest guest]

Thank you SO MUCH for sharing this! I read it and tears

welled up in my eyes. I showed it to my son, who is 9 and had his 5th

surgery this past week and it really did allow him to see that there is a light

at the end of the tunnel.

Please keep us all informed on your son and his ultimate

outcome. I think that many of those whose c-toma issues end, for the most

part, drop out of the group communications.

e

From:

cholesteatoma [mailto:cholesteatoma ] On

Behalf Of ajohannen

Sent: Saturday, January 17, 2009 4:14 PM

cholesteatoma

Subject: [sPAM] Parents - a happy story: It's GONE!

Hi everyone. I just read through the congenital

posts. Wow.

Anyway, I thought I would share with other parents that my son's

(congenital) c-toma, after 6 surgeries, is finally nowhere to be

found! He's DONE!

We struggled with how to proceed after the first two surgeries (in

Kindergarten) showed an aggressive c-toma that didn't want to quit,

but our surgeon had advised us that modified canal wall up (CWU) (or

as he called it, a " window " method) had the best hearing result, so

we stuck with that. My son had a TORP put in during the second

surgery but his hearing was still pretty lousy. The surgeon wanted

to do surgeries every 6 months, and the 1st 3 were six months apart,

but the 3rd surgery showed very reduced regrowth and we decided, for

the sake of our child, to " only " do surgeries 12 months apart

instead because 6 months apart is too disruptive for such a young

child, and plus, they're expensive! His hearing bones were already

completely gone so ... what's the urgency? The surgeon was not

happy about this, but guess what? 4th surgery showed only a " very

small " regrowth, so we were very happy we didn't disrupt our son's

life at the 6 month mark for that. The 5th surgery showed a

regrowth so small the surgeon said he'd have missed it at the 6

month mark (yay for mom and dad!). His hearing result after the 5th

surgery was fantastic -- great hearing! So we were nervous about

having to go back in, but without any other way to monitor regrowth,

it was the only option. The 6th surgery we wanted to push out even

further, to 15 months, but the surgeon had resigned from our

hospital to go to Vanderbilt and thus we went with him one last time

before his departure, at the 12 month mark. The result? NO

REGROWTH! Wahoo!!!!! And his hearing was just checked again at the

3-month-post-op mark, and it's as good as it was before surgery.

Unbelievably great!

It was a long road, starting before kindergarten and ending (sort

of) only now, five years later, in 4th grade. We pray his hearing

stays good and that he'll never need another surgery. And, since

his eardrum and canal wall are all intact, we will rejoice to see

him swimming with his friends as the years go by.

I would like to say to you parents, hang in there. If you are

trying to keep your child's canal wall up for reasons of hearing or

swimming or other of life's necessities, your child might have to

endure more surgeries ... or not. No one can say for certain. Our

surgeon was ready to do what we wanted but advised that even CWD did

not promise no regrowth. So we stuck to the plan. Once a year at

most. Push it out if it seemed reasonable given the size of the

regrowth. And then if it got to be so many years that he was old

enough to really know whether he was willing to sacrifice swimming

and hearing, he could make that decision. We wanted to keep him

whole if possible. And we are very glad.

Anyone in the Nashville area, you have Dr. Roland Eavey coming your

way. Former head of pediatric otology at Mass. Eye & Ear. World

renowned. All I can say is, I'm glad we don't have another

necessary surgery. I don't know what we'd do without him!

Best to all of you, and to anyone reading this who is personally

suffering c-toma. Do your research, talk to your doctor, trust your

gut. :-)