Thank You

[Guest guest]

Thanks for the input. Do you have an opinion on whether you would have wanted the repair as a child instead of waiting until adulthood? My son is seven and we a trying to decide whether or not to have unilateral atresia middle ear reconstruction soon. He wants to hear, but I don't think he can fully appreciate what surgery is all about. He is a good candidate, but ai am worried about the risks.

[Guest guest]

> Brennen has utilateral microtia/atresia, but

> when he was born his ear canals looked fine. Both of them, except the

> right ear canal and ear were a lot smaller. Why didn't the doctors

> notice his condition before?

If he has Atresia...the Dr's should have noticed as soon as they tried to

look in his ears. I haven't heard of ear canals growing over after birth, I

think they develop this way.

However, having said that, some ears may look like they have a canal, but

don't do in a far as they should. A quick look would look like a typical

ear. And without looking very carefully, you may not notice that it is not

an ear drum they are looking at, but skin.

> Also, I found some info on the possibility of tumors growing in his

> ear? Does anyone know anything more about this?

I believe this is called Cholesteatoma

Cholesteatoma – (1) A pseudotumor, usually occurring in the middle ear and

mastoid. Can be dangerous; highly erosive, and may cause destruction of bone

and other tissue.

(2) cystic tumor containing epidermal or similar tissues, that

is growing in a confined area (such as the middle ear) & frequently

constitutes a sequel to chronic otitis media. It may appear as a compact

shiny mass.

I have heard that this is more common in Atresia patients than the general

public, however, I have not actually heard from anyone who this has happened

to.

> I've heard about surgeries to correct his problem using parts of his

> ribs or polyurethane parts... Which is better for the child? I want

> to cause my son as little pain as possible.

I will leave comments about this to those on the list who have been through

it. I will say that which is better depends a lot on your situation. Some

feel the polyethylene is better for them, some feel the rib graft is better

suited to them.

> Has anyone decided not to fix their child's ear(s)? What is that

> like for you and your child?

We have decided not to have any reconstruction on 's ears. At least

for now. He is 7 years old, has bilateral Atresia, and bilateral Grade II

microtia. He has been wearing a Bone conduction aid since he was 2 months

old, and we are in the process of getting him a BAHA.

We have been very upfront, matter-of-fact about his ears. His Daddy's eyes

aren't as they typically are, so I need to deal with glasses/contacts. His

ears are the same. They didn't develop in the typical manner, so he has

smaller ears, and has to deal with a hearing aid.

We have tried (and have been successful so far) to give the tools to

be a self-advocate. When other children ask us " What is that thing on his

ears? " we re-direct them to ask , and he explains that they are hearing

aids, and they help him hear. The kids go " Oh " , and continue playing. No

big deal.

So far, I am thrilled to say, is a well-adjusted, happy child with

lots of friends. The smaller ears, and hearing aid are just part of what

makes him, him.

Steve

[Guest guest]

Hi Crystal,

Welcome to the group. Well, I am (a 40 year old that has unilateral microtia/atresia) . I recently have underwent reconstruction , I started this venture almost a year ago and I went with the polyethelyne implant (unfortunately for me ..mine failed) and in April my implant was removed and I then underwent the rib cartilige harvest and reconstruction (luckily that has succeeded). I now have one more surgery to undergo in order to release my ear and to finish up any cosmetic work that needs to be done.

As for me ... I lived all of 39 years with a microtic ear and if it hadn't of been for a great insurance company and a great doctor I probably would still be living with it. Having microtia was harder on me as a child but once I was older (teenager and adult) it really wasn't an issue even though ever once in a while those same insecurities would haunt me all over again.

I guess what I'm trying to say is there's really no right or wrong answer in a persons (or a parents) decision to have reconstruction done or not. I lived my live as a normal ( non-microtic eared person) would (well except for my own insecurities about the wind blowing or someone seeing my ear) and I owned and operated my own businesses and married and had two beautiful daughters. So what I'm trying to say is there is no right or wrong.... you will make all the right decisions and your beautiful son will be a successful person regardless of whether you decide to go with surgery or not.

I personally wish you and Brennen all the best and I know you will find all the knowledge and support here that you will ever need...these folks have really helped me learn alot and have supported me through some rough spots.

Once again.... welcome to the family...

P.

-- Thank you

Thank you all for your warm welcome =) I just wanted to say that I think this group will be a real lifesaver for me. I do have a couple of questions though. Brennen has utilateral microtia/atresia, but when he was born his ear canals looked fine. Both of them, except the right ear canal and ear were a lot smaller. Why didn't the doctors notice his condition before?Also, I found some info on the possibility of tumors growing in his ear? Does anyone know anything more about this?I've heard about surgeries to correct his problem using parts of his ribs or polyurethane parts... Which is better for the child? I want to cause my son as little pain as possible. My son's ear is smaller, but other than that it looks perfectly normal. How much surgery do you think he will have to have to correct that? The specialist said something about just lifting up the top of the ear so that it looks like the other one. But on the websites I've visited I've seen up to four surgeries. Has anyone decided not to fix their child's ear(s)? What is that like for you and your child?Thanks so much in advance for answering these questions. =)CrystalBrennen 02/07/02

[Guest guest]

Looking back ..I can't really say I thought alot about surgery as a child. My parents were always honest and up front with me as a child. They told me about taking me to doctors as a 2 year old and having x-rays done (let's remember this was 1963) and being told all the inner ear was there but I would have to be at least 6 years old before they could even do any surgery.

My parents had no insurance and so time moved on. As a 10 year old I can remember my parents once again trying to find help in paying for surgery for me... but no success. Their last attempt was when I was 14, they had me checked by an audiologists (at that time they were told I had 20% hearing in the right (microtic ear)and 70% in my left ear), and a plastic surgeon who at that time suggested the prosthetic ear (which would be glued on ). I of course being a teenager felt having a removable ear was not an option!

As I've said before ... once I got out of childhood, (and even though some of those old fears and insecurities still lurked in my mind) I continued my life living it as normally as anyone else (it might've been a little more difficult for me to hear some things but..no one ever knew about my microtia until I had reconstructive surgery). Of course I have chosen not to have atresia surgery so my hearing is still as it has always been.

I can honestly say (now as an adult) having grown up with microtia has really made me a more understanding person and much more willing to accept people for who they are (differences and all). I don't think I would've wanted surgery as a small child .... because I have never really looked at my microtia/atresia as a handicap but merely a difference that God gave to me... and I believe it was so I would grow up into a stronger person able to make my decisions and to accept people for who they are.

I feel that when and if there is surgery is a decision that each person or family should decide for themselves... as I have said before there is no right or wrong . As for me personally..... I wouldn't have changed my life for anything.

Sorry I rambled...but as you can see this is something I feel passionately about and I want others to move ahead with their heads held high regardless of their decisions.

P

-- Re: Thank you

Thanks for the input. Do you have an opinion on whether you would have wanted the repair as a child instead of waiting until adulthood? My son is seven and we a trying to decide whether or not to have unilateral atresia middle ear reconstruction soon. He wants to hear, but I don't think he can fully appreciate what surgery is all about. He is a good candidate, but ai am worried about the risks.

[Guest guest]

Hi ,

Thank you for your candor. I don't often think of my son's hearing impairment as a disability. He's just a regular kid. When I notice it is when he is frustrated by the noise he cannot distinguish from other sounds. He knows his ear and hearing are different, but many people have differences. It's more his frustration with always having to switch sides to hear or answer the phone, or when a friend tries to tell him a secret in the non-hearing ear. It's not a big deal, but he has an intense personality and his frustration is sometimes high level. He would only need inner ear reconstruction. The dr.'s act like it is no big thing, and seem puzzled why we are so cautious. They believe the benefits outweigh the risk, but I am still unable to make a decision. Thanks,

[Guest guest]

crb_2000_080500 wrote:

>

> Brennen has utilateral microtia/atresia, but

> when he was born his ear canals looked fine. Both of them, except the

> right ear canal and ear were a lot smaller. Why didn't the doctors

> notice his condition before?

GRRRRRR....Why does this keep happening??? Happened to me too, wish I

knew why so many of our doctors keep missing something that they

shouldn't be (and seems to be so obvious!).

> I've heard about surgeries to correct his problem using parts of his

> ribs or polyurethane parts... Which is better for the child? I want

> to cause my son as little pain as possible.

I won't comment on the rib graft as there are others who have children

that have had this method done and they would be better at answering

your questions.

My son Evan, 10, has had one ear reconstructed using a polyethylene

implant, done in July 2000. He is scheduled to start reconstruction of

his other ear on September 12th.

It's not really a question of what's better for the child because that

is a very personal decision. The most important thing you can do is to

read and ask all you can about BOTH methods of reconstruction and then

figure out what is best for YOUR child. You can find out more about the

polyethylene implant on Dr. Romo's website: www.earreconstruction.com

(he is Evan's doctor). Read it once, then again and possibly even

again! If you have specific questions, I would be more than happy to

help you with whatever it is you want to know.

> My son's ear is smaller, but other than that it looks perfectly

> normal. How much surgery do you think he will have to have to correct

> that? The specialist said something about just lifting up the top of

> the ear so that it looks like the other one. But on the websites I've

> visited I've seen up to four surgeries.

What kind of specialist did you see? Was he a reconstructive plastic

surgeon? It sounds to me like Brennen has grade II microtia and I

haven't heard that it is possible to correct a grade II by " lifting up

the top of the ear " . He could, of course, have a grade I but I was told

that they usually don't even do reconstruction for that. Honestly, only

a qualified surgeon could tell you the best way to fix his ear. How

many surgeries it would take depends on the method in which you choose

to reconstruct Brennen's ear. Rib graft reconstruction is usually a 4

stage procedure. Polyethylene implant reconstruction is two stages,

about 3 to 4 months apart.

Crystal, welcome to the group! You are already helped Brennen immensely

when you joined us. Keep reading and asking questions and again, if I

can help you with polyethylene info, just give me a shout.

Lynne

>

>

[Guest guest]

--- ,

I posted another message and included this info, but I thought I

would reply here too.

We didn't go to see a specialist, we were referred to a DR. Mouzakes

at the Capital Region Otolaryngology Head & Neck Group, LLP. He

didn't grade Brennen's condition there, and I didn't even know that

there were grades until I started researching myself here at home. I

am a little angry that it took five months for them to diagnose him.

I actually noticed it before they did! I was going to post more, but

Brennen just woke up and is sucking on his arm...I guess that means

he's hungry =)

All of this is in the other post, anyway.

Thanks a lot,

Crystal

Brennen - 02/07/02 - God just kissed my ear on my way down here, and

now I'm special...and my ear proves it!

In AtresiaMicrotia@y..., Lynne Bogner wrote:

>

>

> crb_2000_080500 wrote:

> >

> > Brennen has utilateral microtia/atresia, but

> > when he was born his ear canals looked fine. Both of them, except

the

> > right ear canal and ear were a lot smaller. Why didn't the doctors

> > notice his condition before?

>

> GRRRRRR....Why does this keep happening??? Happened to me too,

wish I

> knew why so many of our doctors keep missing something that they

> shouldn't be (and seems to be so obvious!).

>

> > I've heard about surgeries to correct his problem using parts of

his

> > ribs or polyurethane parts... Which is better for the child? I

want

> > to cause my son as little pain as possible.

>

> I won't comment on the rib graft as there are others who have

children

> that have had this method done and they would be better at answering

> your questions.

> My son Evan, 10, has had one ear reconstructed using a polyethylene

> implant, done in July 2000. He is scheduled to start

reconstruction of

> his other ear on September 12th.

> It's not really a question of what's better for the child because

that

> is a very personal decision. The most important thing you can do is

to

> read and ask all you can about BOTH methods of reconstruction and

then

> figure out what is best for YOUR child. You can find out more

about the

> polyethylene implant on Dr. Romo's website:

www.earreconstruction.com

> (he is Evan's doctor). Read it once, then again and possibly even

> again! If you have specific questions, I would be more than happy

to

> help you with whatever it is you want to know.

>

>

> > My son's ear is smaller, but other than that it looks perfectly

> > normal. How much surgery do you think he will have to have to

correct

> > that? The specialist said something about just lifting up the

top of

> > the ear so that it looks like the other one. But on the websites

I've

> > visited I've seen up to four surgeries.

>

> What kind of specialist did you see? Was he a reconstructive

plastic

> surgeon? It sounds to me like Brennen has grade II microtia and I

> haven't heard that it is possible to correct a grade II by " lifting

up

> the top of the ear " . He could, of course, have a grade I but I was

told

> that they usually don't even do reconstruction for that. Honestly,

only

> a qualified surgeon could tell you the best way to fix his ear. How

> many surgeries it would take depends on the method in which you

choose

> to reconstruct Brennen's ear. Rib graft reconstruction is usually

a 4

> stage procedure. Polyethylene implant reconstruction is two stages,

> about 3 to 4 months apart.

>

>

> Crystal, welcome to the group! You are already helped Brennen

immensely

> when you joined us. Keep reading and asking questions and again,

if I

> can help you with polyethylene info, just give me a shout.

>

> Lynne

> >

> >

[Guest guest]

He would only need inner ear reconstruction. The dr.'s act like it is no big thing, and seem puzzled why we are so cautious. They believe the benefits outweigh the risk, but I am still unable to make a decision. Thanks,

melanie

you just have to be *sure* you've got the right doctor...

jack

[Guest guest]

Thank you all for the thoughts and Prayers for My Dad and Our Family. He went to be with the Lord and I was there Holding his hand the whole time. This has been one of the Hardest things Ive ever been through. But just to know you all are there for me is a wondeful feeling. Thank you from the bottom of my Heart

Love Kathy