Re: Surgery

[Guest guest]

In a message dated 5/9/2000 6:06:20 PM Pacific Daylight Time,

Jasavant@... writes:

<< Does anyone have the name of a Doctor in the So Cal area familiar with

CMT?

Have you ever had surgery for CMT? If so, what surgery? How severe is your

case? My 13 year old daughter has CMT. Two doctors haven given two

different opinions. I think I may need a third. Any input would be helpful.

Thank you.

jasavant@...

>>

I went to Dr Saul Bernstein at the Southern Ca Orthopedic institite in Van

Nuys. He is a pedictric specialist. He did my surgery. I will send you my

phone number you can call me and we can talk.

[Guest guest]

I used to live in So. Cal. I had a great Dr. there by the name of Dr.

Waters. I think he is at Rancho. He used to be. He helped me alot. Also, have

you been to your local MDA Clinic? Call them they can help.

Martha.

Jasavant@... wrote:

Does anyone have the name of a Doctor in the So Cal area familiar with CMT?

Have you ever had surgery for CMT? If so, what surgery? How severe is your

case? My 13 year old daughter has CMT. Two doctors haven given two

different opinions. I think I may need a third. Any input would be helpful.

Thank you.

jasavant@...

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[Guest guest]

I used to live in So. Cal. I had a great Dr. there by the name of Dr.

Waters. I think he is at Rancho. He used to be. He helped me alot. Also, have

you been to your local MDA Clinic? Call them they can help.

Martha.

Jasavant@... wrote:

Does anyone have the name of a Doctor in the So Cal area familiar with CMT?

Have you ever had surgery for CMT? If so, what surgery? How severe is your

case? My 13 year old daughter has CMT. Two doctors haven given two

different opinions. I think I may need a third. Any input would be helpful.

Thank you.

jasavant@...

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alt= " "

src= " http://adimg.egroups.com/img/2380/10/_/616793/_/957920692/ " >

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[Guest guest]

<< I cannot recommend enough finding some you feel is highly qualified, and

does a lot of these. >>

Jack, thanks for the update and the description of your surgery and progress

of your recovery.

I certainly agree that the surgeon must be highly qualified and experienced!

With CMT it is dangerous to be a guinea pig for a surgeon.

Kat

[Guest guest]

<< I cannot recommend enough finding some you feel is highly qualified, and

does a lot of these. >>

Jack, thanks for the update and the description of your surgery and progress

of your recovery.

I certainly agree that the surgeon must be highly qualified and experienced!

With CMT it is dangerous to be a guinea pig for a surgeon.

Kat

[Guest guest]

In a message dated 5/21/2000 6:49:27 AM Eastern Daylight Time,

qsuzy1@... writes:

<<

Hi All,My name is Sue Dail and I will be having surgery on monday the 22 of

may.Send me some good things to help get through the first 2 months and all

your prayers. looking forward tohearing from you and my new life.Thanks Sue

>>

congradulton Sue!!!! godspeed and prayers coming your way

Trisha Lanman

Littermate June 1, 2000

packing, yippee

Las Vegas NV

[Guest guest]

Hi Sue, my name is . It is only hours away that you will be starting a

new life. My thoughts and prayers are with you. What time is your surgery

and I will be in prayer for you at that very minute? Good luck to you as I

hope to be joining you on the other side real soon. Just remember tomorrow

that there are many people standing with you. A great big HUUUUUGGGGGG!

[Guest guest]

In a message dated 5/21/2000 9:23:19 AM Eastern Daylight Time,

BeamonBritney@... writes:

<<

Hi Sue, my name is . It is only hours away that you will be starting a

new life. My thoughts and prayers are with you. What time is your surgery

and I will be in prayer for you at that very minute? Good luck to you as I

hope to be joining you on the other side real soon. Just remember tomorrow

that there are many people standing with you. A great big HUUUUUGGGGGG!

>>

Ditto !!! Godspeed to you and lot so love and prayers are coming your way!!

Trisha Lanman

Littermate June 1, 2000

packing, yippee

Las Vegas NV

[Guest guest]

In a message dated 5/21/2000 6:49:25 AM Eastern Daylight Time,

qsuzy1@... writes:

<< Hi All,My name is Sue Dail and I will be having surgery on monday the 22

of may.Send me some good things to help get through the first 2 months and

all your prayers. looking forward tohearing from you and my new life.Thanks

Sue >>

My prayers are going out for you Sue!!!!!!!

Wanting

to be on the other side,

Cathy in Lenoir, NC

Patient Info Emailed on 5/2/00

BMI 42

" A Journey Of A Thousand Miles Begins With A Single Step! "

[Guest guest]

Hi,

I am ( a 40 year old adult) and I have spent the past year undergoing reconstructive surgery. I started out with the polyethelyne implant and just about four weeks ago underwent surgery using rib cartilige since my implant had failed.

I can tell you the pros and cons of both surgeries. The implant is much easier and when it works it is great. But in my case it became exposed and then infected and it was a real battle. Removal of the infected implant was our only option. The rib cartilige is a bit more painful (well as far as the chest incision) but other then that it really hasn't been all that bad. You can view photos of my surgeries on my web page http://www.geocities.com/surfsup62/surgery.html

I've had two different insurance companies since starting my reconstruction (my husbands company switched insurance the first of the year). Both companies covered all aspects of my surgeries without any hesitation. I know my surgeon said that alot of times the precertification letter that your doctor writes to the insurance company can make a big difference.

Anyway, thats what I have to offer and if you have anymore questions that I may be able to help you with just ask.

P.

-- Surgery

Hi Everyone,1. Has anyone done any research on the use of artificial material for ear reconstruction. What are the pros and cons.2. If this chioce exists why are we still choosing for the second option of getting the rib cartilage.3. How long before the surgery do we contact Dr Brent. And is there a long wait before the Appointment.4. My insurnace is CareChoice - Michigan. They told us that this is purely a cosmetic surgery and they will not pay for any costs.Are any insurances covering this. I would like more inforamation so that i can make the required changes.

[Guest guest]

Hi,

I am ( a 40 year old adult) and I have spent the past year undergoing reconstructive surgery. I started out with the polyethelyne implant and just about four weeks ago underwent surgery using rib cartilige since my implant had failed.

I can tell you the pros and cons of both surgeries. The implant is much easier and when it works it is great. But in my case it became exposed and then infected and it was a real battle. Removal of the infected implant was our only option. The rib cartilige is a bit more painful (well as far as the chest incision) but other then that it really hasn't been all that bad. You can view photos of my surgeries on my web page http://www.geocities.com/surfsup62/surgery.html

I've had two different insurance companies since starting my reconstruction (my husbands company switched insurance the first of the year). Both companies covered all aspects of my surgeries without any hesitation. I know my surgeon said that alot of times the precertification letter that your doctor writes to the insurance company can make a big difference.

Anyway, thats what I have to offer and if you have anymore questions that I may be able to help you with just ask.

P.

-- Surgery

Hi Everyone,1. Has anyone done any research on the use of artificial material for ear reconstruction. What are the pros and cons.2. If this chioce exists why are we still choosing for the second option of getting the rib cartilage.3. How long before the surgery do we contact Dr Brent. And is there a long wait before the Appointment.4. My insurnace is CareChoice - Michigan. They told us that this is purely a cosmetic surgery and they will not pay for any costs.Are any insurances covering this. I would like more inforamation so that i can make the required changes.

[Guest guest]

Hey ...I tried to catch your webpage again, too...but they said it doesn't exist. Did you mistype the addy here? Jane (and Gabi too)

Surgery

Hi Everyone,1. Has anyone done any research on the use of artificial material for ear reconstruction. What are the pros and cons.2. If this chioce exists why are we still choosing for the second option of getting the rib cartilage.3. How long before the surgery do we contact Dr Brent. And is there a long wait before the Appointment.4. My insurnace is CareChoice - Michigan. They told us that this is purely a cosmetic surgery and they will not pay for any costs.Are any insurances covering this. I would like more inforamation so that i can make the required changes.

[Guest guest]

Hello,

I am from Michigan (Lake Orion) as well. Are you familiar with Children's

Special Health Care? It is a health care plan for residents (18 and

younger)of Michigan. If they determine that your child's condition

qualifies as a covered expense, (which isn't hard to do), then they will

cover whatever portion your insurance plan does not (minus your deductible).

We have utilized them in the past for our son Josh's jaw reconstruction.

They are excellent! They would not cover ear reconstruction costs done

outside of the state of Michigan, however, they do cover reconstruction

costs within the state of Michigan. You pay a specific portion (determined

by your income, expenses, and dependents) each month. They will utilize

this money first. If they don't use it all, you are reimbursed. It's

really a no lose situation and they will apply coverage to all doctors and

specialists your child sees. Their phone number is: 1- tell

them you want to speak with someone to determine eligibility for your child.

Our son Josh had his ear reconstructed by Dr. Brent over the past year.

There is not a long wait to get an app't with Dr. Brent. You simply contact

his office and they will let you know what's available. They are very kind.

They will also let you know when would be the appropriate time to begin

treatments.

As for insurance, it makes me sick to think that there are people who

actually consider this a cosmetic surgery. Yet, this is becoming more and

more the case. Once you fight it, they do usually come to their senses and

approve the necessary surgeries. I definitely would not take " no " for an

answer. Josh's surgeries were covered by Aetna PPO Insurance. They were

superb! You really want to make sure you have excellent coverage for the

hospital expenses, not necessarily your surgeons. The hospital bills were

triple that of Dr. Brent's. Therefore you need good hospital coverage.

As far as implant vs. rib graft vs. prosthetic vs. no surgery...there is no

right or wrong way to handle microtia. Each particular approach has it's

own pro's and con's. Choosing the best approach for your child is what

matters and that is no easy task! However, I don't feel that there is only 1

way to handle microtia.

I hope this helps. Please let me know if you want any additional'l info re:

Dr. Brent or Children's Special Health Care Services.

Love, beth

_________________________________________________________________

Chat with friends online, try MSN Messenger: http://messenger.msn.com

[Guest guest]

The address is

http://www.geocities.com/surfsup62/surgery.html

hope this works I just checked it.

-- Re: Surgery

Hey ...I tried to catch your webpage again, too...but they said it doesn't exist. Did you mistype the addy here? Jane (and Gabi too)

Surgery

Hi Everyone,1. Has anyone done any research on the use of artificial material for ear reconstruction. What are the pros and cons.2. If this chioce exists why are we still choosing for the second option of getting the rib cartilage.3. How long before the surgery do we contact Dr Brent. And is there a long wait before the Appointment.4. My insurnace is CareChoice - Michigan. They told us that this is purely a cosmetic surgery and they will not pay for any costs.Are any insurances covering this. I would like more inforamation so that i can make the required changes.

[Guest guest]

Thnax beth,

But isnt Dr Brent in LA. Then how were the costs covered.

Did you need Children's Special Health Care and Aetna coverage for

the treatment.

Su.

> Hello,

>

> I am from Michigan (Lake Orion) as well. Are you familiar with

Children's

> Special Health Care? It is a health care plan for residents (18

and

> younger)of Michigan. If they determine that your child's condition

> qualifies as a covered expense, (which isn't hard to do), then they

will

> cover whatever portion your insurance plan does not (minus your

deductible).

> We have utilized them in the past for our son Josh's jaw

reconstruction.

> They are excellent! They would not cover ear reconstruction costs

done

> outside of the state of Michigan, however, they do cover

reconstruction

> costs within the state of Michigan. You pay a specific portion

(determined

> by your income, expenses, and dependents) each month. They will

utilize

> this money first. If they don't use it all, you are reimbursed.

It's

> really a no lose situation and they will apply coverage to all

doctors and

> specialists your child sees. Their phone number is: 1-800-359-

3722 tell

> them you want to speak with someone to determine eligibility for

your child.

>

> Our son Josh had his ear reconstructed by Dr. Brent over the past

year.

> There is not a long wait to get an app't with Dr. Brent. You simply

contact

> his office and they will let you know what's available. They are

very kind.

> They will also let you know when would be the appropriate time to

begin

> treatments.

>

> As for insurance, it makes me sick to think that there are people

who

> actually consider this a cosmetic surgery. Yet, this is becoming

more and

> more the case. Once you fight it, they do usually come to their

senses and

> approve the necessary surgeries. I definitely would not take " no "

for an

> answer. Josh's surgeries were covered by Aetna PPO Insurance.

They were

> superb! You really want to make sure you have excellent coverage

for the

> hospital expenses, not necessarily your surgeons. The hospital

bills were

> triple that of Dr. Brent's. Therefore you need good hospital

coverage.

>

> As far as implant vs. rib graft vs. prosthetic vs. no

surgery...there is no

> right or wrong way to handle microtia. Each particular approach

has it's

> own pro's and con's. Choosing the best approach for your child is

what

> matters and that is no easy task! However, I don't feel that there

is only 1

> way to handle microtia.

>

> I hope this helps. Please let me know if you want any additional'l

info re:

> Dr. Brent or Children's Special Health Care Services.

>

> Love, beth

>

>

>

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger:

http://messenger.msn.com

[Guest guest]

Hi Su,

Dr. Brent is just south of San Fransisco and just north of San in a

small town called Woodside. Chidren's Special Health Care would not cover

any out of state expenses, so we could not use them. (But I would try again

just to see what they say!)

Aetna paid about 75% of Dr. Brent and approx. 80% of the hospital bills.

Aetna also paid for our airfare and hotel accomodations. Everything else

was out-of-pocket.

Love, beth

>

>Reply-To: AtresiaMicrotia

>To: AtresiaMicrotia

>Subject: Re: Surgery

>Date: Wed, 29 May 2002 18:58:08 -0000

>

>

>Thnax beth,

>But isnt Dr Brent in LA. Then how were the costs covered.

>Did you need Children's Special Health Care and Aetna coverage for

>the treatment.

>

>Su.

>

>

>

> > Hello,

> >

> > I am from Michigan (Lake Orion) as well. Are you familiar with

>Children's

> > Special Health Care? It is a health care plan for residents (18

>and

> > younger)of Michigan. If they determine that your child's condition

> > qualifies as a covered expense, (which isn't hard to do), then they

>will

> > cover whatever portion your insurance plan does not (minus your

>deductible).

> > We have utilized them in the past for our son Josh's jaw

>reconstruction.

> > They are excellent! They would not cover ear reconstruction costs

>done

> > outside of the state of Michigan, however, they do cover

>reconstruction

> > costs within the state of Michigan. You pay a specific portion

>(determined

> > by your income, expenses, and dependents) each month. They will

>utilize

> > this money first. If they don't use it all, you are reimbursed.

>It's

> > really a no lose situation and they will apply coverage to all

>doctors and

> > specialists your child sees. Their phone number is: 1-800-359-

>3722 tell

> > them you want to speak with someone to determine eligibility for

>your child.

> >

> > Our son Josh had his ear reconstructed by Dr. Brent over the past

>year.

> > There is not a long wait to get an app't with Dr. Brent. You simply

>contact

> > his office and they will let you know what's available. They are

>very kind.

> > They will also let you know when would be the appropriate time to

>begin

> > treatments.

> >

> > As for insurance, it makes me sick to think that there are people

>who

> > actually consider this a cosmetic surgery. Yet, this is becoming

>more and

> > more the case. Once you fight it, they do usually come to their

>senses and

> > approve the necessary surgeries. I definitely would not take " no "

>for an

> > answer. Josh's surgeries were covered by Aetna PPO Insurance.

>They were

> > superb! You really want to make sure you have excellent coverage

>for the

> > hospital expenses, not necessarily your surgeons. The hospital

>bills were

> > triple that of Dr. Brent's. Therefore you need good hospital

>coverage.

> >

> > As far as implant vs. rib graft vs. prosthetic vs. no

>surgery...there is no

> > right or wrong way to handle microtia. Each particular approach

>has it's

> > own pro's and con's. Choosing the best approach for your child is

>what

> > matters and that is no easy task! However, I don't feel that there

>is only 1

> > way to handle microtia.

> >

> > I hope this helps. Please let me know if you want any additional'l

>info re:

> > Dr. Brent or Children's Special Health Care Services.

> >

> > Love, beth

> >

> >

> >

> >

> > _________________________________________________________________

> > Chat with friends online, try MSN Messenger:

>http://messenger.msn.com

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

As we have said in this forum, we strongly support the medpor implant

procedure. Our son, Gonzalo, will have his second (and last) stage

surgery on June 10th, and we'll let you know how it goes. So far,

we're very pleased with the decision we took of operating him at age

three with this method. If you have any specific question on the

procedure/postop period/looks/Dr. Reinisch, etc., please don't

hesitate to make them and we'll be glad to answer promptly.

Regards,

& Lujambio.

>

>

> We are seriously considering the implant method due to the less

invasive

> procedure (no internal surgery & only 2 surgeries) and the ability

to perform

> the procedure between the ages of 3 and 5 rather than 6 & 10.

>

> We have met with Dr. Reinisch (Los Angeles) and are meeting with

Dr. Romo

> (NY, NY) later this month. Thankfully, Dr. Reinisch was able to

meet with us

> at his hotel in New Haven, CT when he was here for his nephew's

graduation.

> We liked him very much.

>

> I have yet to hear that there is any more risk associated with the

implant

> than the rib. I understand that parents of boys wish to avoid the

scalp scar

> associated with the implant but, other than that I haven't come

across

> anything. There are risks of complications with both

procedures...about the

> same risk 1% and 1.6%.

>

> Maybe and could add some insight to this conversation.

We're

> still gathering information but, at this point I don't think I will

meet with

> Dr. Brent. Any opinions regarding this would be greatly

appreciated.

>

> (Mom of Lily, 3 years, left side

[Guest guest]

Hello,

I haven't been to the group postings in a while and I'm very curious

about this implant. I don't think I've heard of it. My daughter

Blythe turned 2 in March. I would appreciate the basic information

and a Dr to contact.

Thanks in advance,

> As we have said in this forum, we strongly support the medpor

implant

> procedure. Our son, Gonzalo, will have his second (and last) stage

> surgery on June 10th, and we'll let you know how it goes. So far,

> we're very pleased with the decision we took of operating him at

age

> three with this method. If you have any specific question on the

> procedure/postop period/looks/Dr. Reinisch, etc., please don't

> hesitate to make them and we'll be glad to answer promptly.

> Regards,

> & Lujambio.

>

> >

> >

> > We are seriously considering the implant method due to the less

> invasive

> > procedure (no internal surgery & only 2 surgeries) and the

ability

> to perform

> > the procedure between the ages of 3 and 5 rather than 6 & 10.

> >

> > We have met with Dr. Reinisch (Los Angeles) and are meeting with

> Dr. Romo

> > (NY, NY) later this month. Thankfully, Dr. Reinisch was able to

> meet with us

> > at his hotel in New Haven, CT when he was here for his nephew's

> graduation.

> > We liked him very much.

> >

> > I have yet to hear that there is any more risk associated with

the

> implant

> > than the rib. I understand that parents of boys wish to avoid

the

> scalp scar

> > associated with the implant but, other than that I haven't come

> across

> > anything. There are risks of complications with both

> procedures...about the

> > same risk 1% and 1.6%.

> >

> > Maybe and could add some insight to this

conversation.

> We're

> > still gathering information but, at this point I don't think I

will

> meet with

> > Dr. Brent. Any opinions regarding this would be greatly

> appreciated.

> >

> > (Mom of Lily, 3 years, left side

[Guest guest]

<< I can still see very faint stitch marks. The ear is " smooth " ,

meaning you can run your finger over it and you do not feel any kind of

bumps or ridges but you can see a line or as you put it " a clear sign of

surgery " . There is also a slight difference in the coloration of the

ear where the skin graft vs. the TPF flap was used as well. >>

Does anyone know if this is the same for Rib Graft?