Re:Doctor issues & 's story

[Guest guest]

Hey Carla & nna,

I used to live in Connecticut. My daughter , now almost 16, was seeing Dr. Lisman in Manhattan who was referred to us and I have been EXTREMELY satisfied with the results of her 6, yes 6 , surgeries. My insurance at the time tried denying us. I filed a grievance with them stating that the doctors they wanted to have do procedures on were not experienced enough. I sent several pictures of with the grievance paperwork. They did approve us to use Dr. Lisman and paid all of the bills involved. Most insurance companied have no clue what BPES is or how rare and delicate the procedures involved are.

was born with an extreme case of BPES including extremely small eye openings, inverted epicanthal folds, ectropian of the lower lids, and telecanthus, She also had an case of strabismus. She also had an extremely wide bridge and a bump on her nose required a different surgeon to repair that.

She had her first procedure at 7 months, a lid suspension., and a procedure for the strabismus. By yet another pediatric ophthalmologist !

A 11 months a repair to one of her lid suspensions.

At about 31/2 she had her double opposing z-plastys, a transnasal wiring and orbital osteotomy (actually ground away some of the bone near the bridge of her nose to make her eye sockets larger).

At 4 she had the ectropian of the lower eyelids repaired. Dr. Lisman took a crescent shaped piece of skin from behind her ears and grafted it under her eyes. She had to have her eyelids sown shut for 2 days to make sure the grafts healed correctly. That was a tough one !!

At 6 she had her slings tightened and laser dermabrasion done on the scar tissue.

At 13 Dr. Lisman adjusted the slings, minor, and did more laser dermabrasion on scar tissue. Dr. ph McCarthy ( a world renowned facial cranial pediatric surgeon) gave her a beautiful new nose!!

She needs to go back and see Dr. Lisman, We live in North Carolina now., so we may plan that for later this year.

Overall she looks GREAT. She is a happy kid, she has lots of friends and is doing well in school.

Get the best doctor you can even if you have to travel.

had seen 4 or 5 doctors who were willing to do the surgery including a large children's hospital. I ask how many children have you operated on with BPES. The major children's hospital had only seen one case this severe

in 15 years !! I paid my bill and said goodbye.

I actually got so desperate I started calling plastic surgeons in the phone book asking if anyone knew of this syndrome or knew anyone that did. This is how we found Dr. Lisman. Dr. Lisman is a world renowned ophthalmologic plastic surgeon. He mostly does rich old women.LOL He is a specialist in BPES and sees about 10 new cases a year. So if you are in New England please consider seeing him.

After all of 's procedures I would keep her face iced around the clock. Ice reduces swelling and gets a much better result. Do not expect the nurses to do this, they do not have the time. Have the doctor write an order for pain medication BEFORE the procedure so that if your child wakes up in pain the orders are in place and medication can be given immediately.

Ask questions and be involved in your child's care.

If you don't think your current doctor has the knowledge and/or experience keep looking !

I will post some pictures of as soon as I have some free time.

Anyone in North Carolina or Connecticut I would love to hear from you.

Honacher

In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time, carlahwll@... writes:

Hi everybody I have not posted in a while although I do read all the postings and all the support we give to each other. I am having a problem with my insurance company denying nna's visits to the specialist in Boston Ma. They are making me go to a doctor who is in my network in CT. His name is Zachary Klett. He is at Yale. I have not met him yet but I suppose I need to go down and meet him. I am so frustrated because I had such a comfort level with Dr sen in Boston. We were getting ready for her first surgery and now we are having to start all over again. This will be the fourth doctor we have seen. So really what I am looking for is if anyone has gone to Yale for treatment of BPES or if anyone knows Dr Klett? Carla and nna(2yr)

[Guest guest]

, thank you so much for all your in put. I have been to 2 doctors in CT and then moved on because they wanted to do unnecessary surgery on nna at 6 months old. She is not a very severe case of bpes... that is kind of funny saying that Actually all cases are severe but as compared to my husband and several people in his family she is the least severe. I then went back to square one and did a lot of research and I found a doctor at Harvard School of Medicine Dr sen.We saw him 2 times and now comes surgery time and we have a new insurance and it will not cover it. He is wonderful which makes it that much harder. nna is not afraid of him she talkes to him. She does not even like her pediatrician that much.. It kills me. I have exausted all the appeals possible. As a matter of fact the last letter the insurance company gave to me stated just that. " you have exausted your appeals process." So back to square one again. So I

need to see this Dr Klett . He is an Oculoplastic surgeon. I need before and after pictures from him . I need to know how many of these he has done. This is no joke it is her face so I hope he is good. If I have to pay for this out of my pocket she will get the best possible care. I have heard of your daughters doctor but again he is out of my network. I would love to see pictures of . She has gone through so much and she is doing so well it is so good to hear. thank you for the support. Carla and nnaGoldHillLLC@... wrote: Hey Carla & nna, I used to live in Connecticut. My daughter , now almost 16, was seeing Dr. Lisman in Manhattan who was referred to us and I have been EXTREMELY satisfied with the results of her 6, yes 6 , surgeries. My insurance at the time tried denying us. I filed a grievance with them stating that the doctors they wanted to have do procedures on were not experienced enough. I sent several pictures of with the grievance paperwork. They did approve us to use Dr. Lisman and paid all of the bills involved. Most insurance companied have no clue what BPES is or how rare and delicate the procedures involved are. was born with an extreme case of BPES including extremely small eye openings, inverted epicanthal

folds, ectropian of the lower lids, and telecanthus, She also had an case of strabismus. She also had an extremely wide bridge and a bump on her nose required a different surgeon to repair that. She had her first procedure at 7 months, a lid suspension., and a procedure for the strabismus. By yet another pediatric ophthalmologist ! A 11 months a repair to one of her lid suspensions. At about 31/2 she had her double opposing z-plastys, a transnasal wiring and orbital osteotomy (actually ground away some of the bone near the bridge of her nose to make her eye sockets larger). At 4 she had the ectropian of the lower eyelids repaired. Dr. Lisman took a crescent shaped piece of skin from behind her ears and grafted it under her eyes. She had to have her eyelids sown shut for 2 days to make sure the grafts healed correctly. That was a tough one !! At 6 she had her slings tightened

and laser dermabrasion done on the scar tissue. At 13 Dr. Lisman adjusted the slings, minor, and did more laser dermabrasion on scar tissue. Dr. ph McCarthy ( a world renowned facial cranial pediatric surgeon) gave her a beautiful new nose!! She needs to go back and see Dr. Lisman, We live in North Carolina now., so we may plan that for later this year. Overall she looks GREAT. She is a happy kid, she has lots of friends and is doing well in school. Get the best doctor you can even if you have to travel. had seen 4 or 5 doctors who were willing to do the surgery including a large children's hospital. I ask how many children have you operated on with BPES. The major children's hospital had only seen one case this severe in 15 years !! I paid my bill and said goodbye. I actually got so desperate I

started calling plastic surgeons in the phone book asking if anyone knew of this syndrome or knew anyone that did. This is how we found Dr. Lisman. Dr. Lisman is a world renowned ophthalmologic plastic surgeon. He mostly does rich old women.LOL He is a specialist in BPES and sees about 10 new cases a year. So if you are in New England please consider seeing him. After all of 's procedures I would keep her face iced around the clock. Ice reduces swelling and gets a much better result. Do not expect the nurses to do this, they do not have the time. Have the doctor write an order for pain medication BEFORE the procedure so that if your child wakes up in pain the orders are in place and medication can be given immediately. Ask questions and be involved in your child's care. If you don't think your current doctor has the knowledge and/or experience keep looking ! I will post some

pictures of as soon as I have some free time. Anyone in North Carolina or Connecticut I would love to hear from you. Honacher In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time, carlahwll@... writes: Hi everybody I have not posted in a while although I do read all the postings and all the support we give to each other. I am having a problem with my insurance company denying nna's visits to the specialist in Boston Ma. They are making me go to a doctor who is in my network in CT. His name is Zachary Klett. He is at Yale. I have not met him yet but I suppose I need to go down and meet him. I am so frustrated because I had such a comfort level with

Dr sen in Boston. We were getting ready for her first surgery and now we are having to start all over again. This will be the fourth doctor we have seen. So really what I am looking for is if anyone has gone to Yale for treatment of BPES or if anyone knows Dr Klett? Carla and nna(2yr) __________________________________________________

[Guest guest]

Carla and , Thank you for your postings. Carla, I cannot help in the insurance situation with a reference on a doctor, but I want you to know that I know exactly how you feel. You are right, it is your daughter's eyes and we as parents want only the best outcome. I could just hear your conviction through the words in your email. , I'm not sure where you live in NC but I live in Charlotte. I thought I would ask if you have heard of Dr. Dutton at UNC-Chapel Hill? I am in the process of finding a doctor for my daughter, Paige, and we just saw him. He seemed to be wonderful and answered all of my questions. I left feeling like I learned so much about BPES that I never knew before. Since UNC is a teaching hospital this doctor, who is a plastic surgeon, also teaches. I asked him if I could take the sketches he drew

of what the sugery would look like and he ended up photocopying pages from a surgical instruction book. This is where it gets funny. I asked him if he had done a lot of these types of surgeries before and he said, "this is my book." So I guess that would mean he had! My only concern is that he is too good to be true. I just thought I would ask to see if you were at all familiar with him. I feel bad being so skeptical but like Carla, I want only the best for Paige. Carla Howell <carlahwll@...> wrote: , thank you so much for all your in put. I have been to 2 doctors in CT and then moved on because they wanted to do unnecessary surgery on nna at 6 months old. She is not a very severe case of bpes... that is kind of funny saying that Actually all cases are severe but as compared to my husband and several people in his family she is the least severe. I then went back to square one and did a lot of research and I found a doctor at Harvard School of Medicine Dr sen.We saw him 2 times and now comes surgery time and we have a new insurance and it will not cover it. He is wonderful which makes it that much harder. nna is not afraid of him she talkes to him. She does not even like her pediatrician that much.. It kills me. I have exausted all the appeals possible. As a matter of fact the last letter the insurance company gave to me stated just that. " you

have exausted your appeals process." So back to square one again. So I need to see this Dr Klett . He is an Oculoplastic surgeon. I need before and after pictures from him . I need to know how many of these he has done. This is no joke it is her face so I hope he is good. If I have to pay for this out of my pocket she will get the best possible care. I have heard of your daughters doctor but again he is out of my network. I would love to see pictures of . She has gone through so much and she is doing so well it is so good to hear. thank you for the support. Carla and nnaGoldHillLLC@... wrote: Hey Carla & nna, I used to live in Connecticut. My

daughter , now almost 16, was seeing Dr. Lisman in Manhattan who was referred to us and I have been EXTREMELY satisfied with the results of her 6, yes 6 , surgeries. My insurance at the time tried denying us. I filed a grievance with them stating that the doctors they wanted to have do procedures on were not experienced enough. I sent several pictures of with the grievance paperwork. They did approve us to use Dr. Lisman and paid all of the bills involved. Most insurance companied have no clue what BPES is or how rare and delicate the procedures involved are. was born with an extreme case of BPES including extremely small eye openings, inverted epicanthal folds, ectropian of the lower lids, and telecanthus, She also had an case of strabismus. She also had an extremely wide bridge and a bump on her nose required a different surgeon to repair that. She had her first procedure at 7 months, a lid suspension., and a procedure for the strabismus. By yet another pediatric ophthalmologist ! A 11 months a repair to one of her lid suspensions. At about 31/2 she had her double opposing z-plastys, a transnasal wiring and orbital osteotomy (actually ground away some of the bone near the bridge of her nose to make her eye sockets larger). At 4 she had the ectropian of the lower eyelids repaired. Dr. Lisman took a crescent shaped piece of skin from behind her ears and grafted it under her eyes. She had to have her eyelids sown shut for 2 days to make sure the grafts healed correctly. That was a tough one !! At 6 she had her slings tightened and laser dermabrasion done on the scar tissue. At 13 Dr. Lisman adjusted the slings, minor, and did more laser dermabrasion on scar tissue. Dr. ph McCarthy ( a world renowned

facial cranial pediatric surgeon) gave her a beautiful new nose!! She needs to go back and see Dr. Lisman, We live in North Carolina now., so we may plan that for later this year. Overall she looks GREAT. She is a happy kid, she has lots of friends and is doing well in school. Get the best doctor you can even if you have to travel. had seen 4 or 5 doctors who were willing to do the surgery including a large children's hospital. I ask how many children have you operated on with BPES. The major children's hospital had only seen one case this severe in 15 years !! I paid my bill and said goodbye. I actually got so desperate I started calling plastic surgeons in the phone book asking if anyone knew of this syndrome or knew anyone that did. This is how we found Dr. Lisman. Dr. Lisman is a world renowned

ophthalmologic plastic surgeon. He mostly does rich old women.LOL He is a specialist in BPES and sees about 10 new cases a year. So if you are in New England please consider seeing him. After all of 's procedures I would keep her face iced around the clock. Ice reduces swelling and gets a much better result. Do not expect the nurses to do this, they do not have the time. Have the doctor write an order for pain medication BEFORE the procedure so that if your child wakes up in pain the orders are in place and medication can be given immediately. Ask questions and be involved in your child's care. If you don't think your current doctor has the knowledge and/or experience keep looking ! I will post some pictures of as soon as I have some free time. Anyone in North Carolina or Connecticut I would love to hear from you. Honacher In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time, carlahwll@... writes: Hi everybody I have not posted in a while although I do read all the postings and all the support we give to each other. I am having a problem with my insurance company denying nna's visits to the specialist in Boston Ma. They are making me go to a doctor who is in my network in CT. His name is Zachary Klett. He is at Yale. I have not met him yet but I suppose I need to go down and meet him. I am so frustrated because I had such a comfort level with Dr sen in Boston. We were getting ready for her first surgery and now we are having to start all over again. This will be the fourth doctor we have seen. So really what I

am looking for is if anyone has gone to Yale for treatment of BPES or if anyone knows Dr Klett? Carla and nna(2yr) __________________________________________________

[Guest guest]

Hey & Debbie,

I will put a call into Dr. Lisman's office and see who he would recommend down here. He did tell us that if we needed someone he did have a colleague he would refer us to, but I don't remember the name.

Freaky thing last night watching TV.

I let my daughter read the post I wrote on all the procedures she had ( she could have cared less LOL ) and we talked a bit about her doctors. Well last night I was watching The Discovery Heath Channel. It was a show about children with facial deformities. I went into 's room to tell her about it and she was already watching it. Good for her to see that BPES is really a minor problem. Some facial deformities where quit severe. They talked about one little boy going to New York University Medical Center , this is where most of 's surgeries were performed. And wouldn't you know it the facial cranial surgeon was Dr. ph McCarthy. WOW It was nice to see him as he was a very kind man. This is the man the gave a beautiful nose ! And it was good to know again that had the absolute best surgeons to help her out.

[Guest guest]

What surgery is planned for Paige? Lily will have canthioplasty next

spring.

>

> Hey Carla & nna,

>

> I used to live in Connecticut. My daughter , now almost 16,

was seeing Dr. Lisman in Manhattan who was referred to us and

I have been EXTREMELY satisfied with the results of her 6, yes 6 ,

surgeries. My insurance at the time tried denying us. I filed a

grievance with them stating that the doctors they wanted to have do

procedures on were not experienced enough. I sent several

pictures of with the grievance paperwork. They did approve us

to use Dr. Lisman and paid all of the bills involved. Most insurance

companied have no clue what BPES is or how rare and delicate the

procedures involved are.

>

> was born with an extreme case of BPES including extremely

small eye openings, inverted epicanthal folds, ectropian of the lower

lids, and telecanthus, She also had an case of strabismus. She also

had an extremely wide bridge and a bump on her nose required a

different surgeon to repair that.

>

> She had her first procedure at 7 months, a lid suspension., and a

procedure for the strabismus. By yet another pediatric ophthalmologist !

> A 11 months a repair to one of her lid suspensions.

> At about 31/2 she had her double opposing z-plastys, a transnasal

wiring and orbital osteotomy (actually ground away some of the bone

near the bridge of her nose to make her eye sockets larger).

> At 4 she had the ectropian of the lower eyelids repaired. Dr.

Lisman took a crescent shaped piece of skin from behind her ears and

grafted it under her eyes. She had to have her eyelids sown shut for

2 days to make sure the grafts healed correctly. That was a tough one !!

> At 6 she had her slings tightened and laser dermabrasion done on

the scar tissue.

> At 13 Dr. Lisman adjusted the slings, minor, and did more laser

dermabrasion on scar tissue. Dr. ph McCarthy ( a world renowned

facial cranial pediatric surgeon) gave her a beautiful new nose!!

> She needs to go back and see Dr. Lisman, We live in North Carolina

now., so we may plan that for later this year.

> Overall she looks GREAT. She is a happy kid, she has lots of

friends and is doing well in school.

>

>

> Get the best doctor you can even if you have to travel.

> had seen 4 or 5 doctors who were willing to do the surgery

including a large children's hospital. I ask how many children have

you operated on with BPES. The major children's hospital had only

seen one case this severe

>

> in 15 years !! I paid my bill and said goodbye.

> I actually got so desperate I started calling plastic surgeons in

the phone book asking if anyone knew of this syndrome or knew anyone

that did. This is how we found Dr. Lisman. Dr. Lisman is a world

renowned ophthalmologic plastic surgeon. He mostly does rich old

women.LOL He is a specialist in BPES and sees about 10 new cases a

year. So if you are in New England please consider seeing him.

> After all of 's procedures I would keep her face iced around

the clock. Ice reduces swelling and gets a much better result. Do

not expect the nurses to do this, they do not have the time. Have the

doctor write an order for pain medication BEFORE the procedure so that

if your child wakes up in pain the orders are in place and medication

can be given immediately.

> Ask questions and be involved in your child's care.

> If you don't think your current doctor has the knowledge and/or

experience keep looking !

> I will post some pictures of as soon as I have some free time.

> Anyone in North Carolina or Connecticut I would love to hear from you.

>

> Honacher

>

>

> In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time,

carlahwll@... writes:

> Hi everybody I have not posted in a while although I do read

all the

> postings and all the support we give to each other. I am having a

> problem with my insurance company denying nna's visits to the

> specialist in Boston Ma. They are making me go to a doctor who is in my

> network in CT. His name is Zachary Klett. He is at Yale. I have not met

> him yet but I suppose I need to go down and meet him. I am so

> frustrated because I had such a comfort level with Dr sen in

> Boston. We were getting ready for her first surgery and now we are

> having to start all over again. This will be the fourth doctor we have

> seen. So really what I am looking for is if anyone has gone to Yale for

> treatment of BPES or if anyone knows Dr Klett?

>

> Carla and nna(2yr)

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

, thanks for your postings too. As my son's situation becomes more

complicated,

your situation encourages me to be a better advocate for him too with his

doctors and

insurance issues.

Carla, I live in Raleigh. Like , I'd be interested too in any doctors

you've heard of or

your experience with any here. We're currently at Duke w/Dr. Buckley, and so far

we're

very comfortable with him but I didn't do much research beforehand and just want

to

know who's out here.

Hey ! Keep me updated too! I have some questions I'll email you -

Debbie

>

> Hey Carla & nna,

>

> I used to live in Connecticut. My daughter , now almost 16, was seeing

Dr.

Lisman in Manhattan who was referred to us and I have been EXTREMELY

satisfied

with the results of her 6, yes 6 , surgeries. My insurance at the time tried

denying us. I

filed a grievance with them stating that the doctors they wanted to have do

procedures on

were not experienced enough. I sent several pictures of with the

grievance

paperwork. They did approve us to use Dr. Lisman and paid all of the bills

involved. Most

insurance companied have no clue what BPES is or how rare and delicate the

procedures

involved are.

>

> was born with an extreme case of BPES including extremely small eye

openings,

inverted epicanthal folds, ectropian of the lower lids, and telecanthus, She

also had an

case of strabismus. She also had an extremely wide bridge and a bump on her nose

required a different surgeon to repair that.

>

> She had her first procedure at 7 months, a lid suspension., and a procedure

for the

strabismus. By yet another pediatric ophthalmologist !

> A 11 months a repair to one of her lid suspensions.

> At about 31/2 she had her double opposing z-plastys, a transnasal wiring and

orbital

osteotomy (actually ground away some of the bone near the bridge of her nose to

make

her eye sockets larger).

> At 4 she had the ectropian of the lower eyelids repaired. Dr. Lisman took a

crescent

shaped piece of skin from behind her ears and grafted it under her eyes. She

had to have

her eyelids sown shut for 2 days to make sure the grafts healed correctly. That

was a

tough one !!

> At 6 she had her slings tightened and laser dermabrasion done on the scar

tissue.

> At 13 Dr. Lisman adjusted the slings, minor, and did more laser dermabrasion

on scar

tissue. Dr. ph McCarthy ( a world renowned facial cranial pediatric

surgeon) gave her a

beautiful new nose!!

> She needs to go back and see Dr. Lisman, We live in North Carolina now., so

we may

plan that for later this year.

> Overall she looks GREAT. She is a happy kid, she has lots of friends and is

doing well

in school.

>

>

> Get the best doctor you can even if you have to travel.

> had seen 4 or 5 doctors who were willing to do the surgery including a

large

children's hospital. I ask how many children have you operated on with BPES.

The major

children's hospital had only seen one case this severe

>

> in 15 years !! I paid my bill and said goodbye.

> I actually got so desperate I started calling plastic surgeons in the phone

book asking

if anyone knew of this syndrome or knew anyone that did. This is how we found

Dr.

Lisman. Dr. Lisman is a world renowned ophthalmologic plastic surgeon. He

mostly does

rich old women.LOL He is a specialist in BPES and sees about 10 new cases a

year. So if

you are in New England please consider seeing him.

> After all of 's procedures I would keep her face iced around the clock.

Ice reduces

swelling and gets a much better result. Do not expect the nurses to do this,

they do not

have the time. Have the doctor write an order for pain medication BEFORE the

procedure

so that if your child wakes up in pain the orders are in place and medication

can be given

immediately.

> Ask questions and be involved in your child's care.

> If you don't think your current doctor has the knowledge and/or experience

keep

looking !

> I will post some pictures of as soon as I have some free time.

> Anyone in North Carolina or Connecticut I would love to hear from you.

>

> Honacher

>

>

> In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time,

carlahwll@...

writes:

> Hi everybody I have not posted in a while although I do read all the

> postings and all the support we give to each other. I am having a

> problem with my insurance company denying nna's visits to the

> specialist in Boston Ma. They are making me go to a doctor who is in my

> network in CT. His name is Zachary Klett. He is at Yale. I have not met

> him yet but I suppose I need to go down and meet him. I am so

> frustrated because I had such a comfort level with Dr sen in

> Boston. We were getting ready for her first surgery and now we are

> having to start all over again. This will be the fourth doctor we have

> seen. So really what I am looking for is if anyone has gone to Yale for

> treatment of BPES or if anyone knows Dr Klett?

>

> Carla and nna(2yr)

>

>

>

>

>

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Hi Beth, Dr. Dutton would like to perform her inner corners surgery first in order to release enough of the tension to properly perform the lid lift. From what he explained to me the problem that BPES creates is that there is not enough skin vertically. That is why the eyelid can't make its own crease (normally rolling kind of behind the eyeball) when the eye is open. I think another doctor described it as like a window shade where the eyelid just opens and closes in front of the eyeball. I know, it's a strange example but I guess it was the best they could do. By correcting the corners first, it should ensure that the lid has a very natural curve to it. I was very excited to hear this because my main concern for Paige was that she would get a triangular-shaped eye. I have been very pleased with my surgical outcome and in my case they did my corners first too.

However, he also said that in order to prevent the triangular-shaped eyes you have to make sure that the incisions made above the eyebrow aren't too close together. That is what causes that affect. But the reverse is also true. If the incisions are made too far apart, it can make the eye appear square or rectangular. Ok, so this big long explanation to say her corners will be done first probably around the age of 4 and the lid lift will be completed after that heals. The first choice for doctors is to wait until the child is in their teens before correcting the corners because the sinuses fill out and the nasal bridge naturally develops. However, for emotional and social reasons, he said having it done before school (i.e. kindergarten) is optimal (for potential teasing reasons). He will use silicone for her lid lift so that any adjustments that need

to be made later can be done more easily. In my case, in order to repair my droopy eyelid, he will have to perform the surgery very differently because I have scar tissue where they used my leg muscle. He said if leg muscle is used you can't just "cinch" it up because you would have to redo the whole surgery and there isn't enough room to do it since there is so much scar tissue. I hope this all made sense and I hope I didn't repeat information you already knew! I am just thankful that it seems like just two surgeries for Paige. I don't want to have to do any more than she absolutely has to have done. But we'll see... bethgordon03 <bethgordon03@...> wrote: What surgery is planned for Paige? Lily will have canthioplasty nextspring. > > Hey Carla & nna,> > I used to live in Connecticut. My daughter , now almost 16,was seeing Dr. Lisman in Manhattan who was referred to us andI have been EXTREMELY satisfied with the results of her 6, yes 6

,surgeries. My insurance at the time tried denying us. I filed agrievance with them stating that the doctors they wanted to have doprocedures on were not experienced enough. I sent severalpictures of with the grievance paperwork. They did approve usto use Dr. Lisman and paid all of the bills involved. Most insurancecompanied have no clue what BPES is or how rare and delicate theprocedures involved are.> > was born with an extreme case of BPES including extremelysmall eye openings, inverted epicanthal folds, ectropian of the lowerlids, and telecanthus, She also had an case of strabismus. She alsohad an extremely wide bridge and a bump on her nose required adifferent surgeon to repair that.> > She had her first procedure at 7 months, a lid suspension., and aprocedure for the strabismus. By yet another pediatric ophthalmologist !> A 11 months a repair to one of her lid

suspensions. > At about 31/2 she had her double opposing z-plastys, a transnasalwiring and orbital osteotomy (actually ground away some of the bonenear the bridge of her nose to make her eye sockets larger).> At 4 she had the ectropian of the lower eyelids repaired. Dr.Lisman took a crescent shaped piece of skin from behind her ears andgrafted it under her eyes. She had to have her eyelids sown shut for2 days to make sure the grafts healed correctly. That was a tough one !!> At 6 she had her slings tightened and laser dermabrasion done onthe scar tissue.> At 13 Dr. Lisman adjusted the slings, minor, and did more laserdermabrasion on scar tissue. Dr. ph McCarthy ( a world renownedfacial cranial pediatric surgeon) gave her a beautiful new nose!!> She needs to go back and see Dr. Lisman, We live in North Carolinanow., so we may plan that for later this year.> Overall she looks GREAT. She is a

happy kid, she has lots offriends and is doing well in school.> > > Get the best doctor you can even if you have to travel.> had seen 4 or 5 doctors who were willing to do the surgeryincluding a large children's hospital. I ask how many children haveyou operated on with BPES. The major children's hospital had onlyseen one case this severe> > in 15 years !! I paid my bill and said goodbye.> I actually got so desperate I started calling plastic surgeons inthe phone book asking if anyone knew of this syndrome or knew anyonethat did. This is how we found Dr. Lisman. Dr. Lisman is a worldrenowned ophthalmologic plastic surgeon. He mostly does rich oldwomen.LOL He is a specialist in BPES and sees about 10 new cases ayear. So if you are in New England please consider seeing him.> After all of 's procedures I would keep her face iced aroundthe clock. Ice reduces swelling and

gets a much better result. Donot expect the nurses to do this, they do not have the time. Have thedoctor write an order for pain medication BEFORE the procedure so thatif your child wakes up in pain the orders are in place and medicationcan be given immediately.> Ask questions and be involved in your child's care.> If you don't think your current doctor has the knowledge and/orexperience keep looking !> I will post some pictures of as soon as I have some free time.> Anyone in North Carolina or Connecticut I would love to hear from you.> > Honacher> > > In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time,carlahwll@... writes:> Hi everybody I have not posted in a while although I do readall the > postings and all the support we give to each other. I am having a > problem with my insurance company denying nna's visits to the

> specialist in Boston Ma. They are making me go to a doctor who is in my > network in CT. His name is Zachary Klett. He is at Yale. I have not met > him yet but I suppose I need to go down and meet him. I am so > frustrated because I had such a comfort level with Dr sen in > Boston. We were getting ready for her first surgery and now we are > having to start all over again. This will be the fourth doctor we have > seen. So really what I am looking for is if anyone has gone to Yale for > treatment of BPES or if anyone knows Dr Klett? > > Carla and nna(2yr)> > > > > > > > > > > __________________________________________________>

[Guest guest]

Hi

It is always good to hear it explained in a different way.

Lily is going to have her inner corners done also. In her case, she

had slngs put in as a baby but she couldn't open her eyes at all and

it had to be done. I had the canthioplasty done first, also.

I know what you mean about the shape. In Lily's case the doctor used

a curved piece of silicon to create a " crease " and give her eyes a

good shape. Even though her eye openings are still small, her eyes

have a good shape( compared to them being closed)

I am still not certain about the silicon vs. fascia- Dr. G. really

thinks fascia is the best way, the Dr. at Wilmer Eye agreed. I might

take her to a dr. in Pittsburgh just for one more opinion.

I dread the surgeries.

> >

> > Hey Carla & nna,

> >

> > I used to live in Connecticut. My daughter , now almost 16,

> was seeing Dr. Lisman in Manhattan who was referred to us

and

> I have been EXTREMELY satisfied with the results of her 6, yes 6 ,

> surgeries. My insurance at the time tried denying us. I filed a

> grievance with them stating that the doctors they wanted to have do

> procedures on were not experienced enough. I sent several

> pictures of with the grievance paperwork. They did approve us

> to use Dr. Lisman and paid all of the bills involved. Most

insurance

> companied have no clue what BPES is or how rare and delicate the

> procedures involved are.

> >

> > was born with an extreme case of BPES including extremely

> small eye openings, inverted epicanthal folds, ectropian of the

lower

> lids, and telecanthus, She also had an case of strabismus. She also

> had an extremely wide bridge and a bump on her nose required a

> different surgeon to repair that.

> >

> > She had her first procedure at 7 months, a lid suspension., and a

> procedure for the strabismus. By yet another pediatric

ophthalmologist !

> > A 11 months a repair to one of her lid suspensions.

> > At about 31/2 she had her double opposing z-plastys, a transnasal

> wiring and orbital osteotomy (actually ground away some of the bone

> near the bridge of her nose to make her eye sockets larger).

> > At 4 she had the ectropian of the lower eyelids repaired. Dr.

> Lisman took a crescent shaped piece of skin from behind her ears

and

> grafted it under her eyes. She had to have her eyelids sown shut

for

> 2 days to make sure the grafts healed correctly. That was a tough

one !!

> > At 6 she had her slings tightened and laser dermabrasion done on

> the scar tissue.

> > At 13 Dr. Lisman adjusted the slings, minor, and did more laser

> dermabrasion on scar tissue. Dr. ph McCarthy ( a world renowned

> facial cranial pediatric surgeon) gave her a beautiful new nose!!

> > She needs to go back and see Dr. Lisman, We live in North

Carolina

> now., so we may plan that for later this year.

> > Overall she looks GREAT. She is a happy kid, she has lots of

> friends and is doing well in school.

> >

> >

> > Get the best doctor you can even if you have to travel.

> > had seen 4 or 5 doctors who were willing to do the surgery

> including a large children's hospital. I ask how many children have

> you operated on with BPES. The major children's hospital had only

> seen one case this severe

> >

> > in 15 years !! I paid my bill and said goodbye.

> > I actually got so desperate I started calling plastic surgeons in

> the phone book asking if anyone knew of this syndrome or knew

anyone

> that did. This is how we found Dr. Lisman. Dr. Lisman is a world

> renowned ophthalmologic plastic surgeon. He mostly does rich old

> women.LOL He is a specialist in BPES and sees about 10 new cases a

> year. So if you are in New England please consider seeing him.

> > After all of 's procedures I would keep her face iced around

> the clock. Ice reduces swelling and gets a much better result. Do

> not expect the nurses to do this, they do not have the time. Have

the

> doctor write an order for pain medication BEFORE the procedure so

that

> if your child wakes up in pain the orders are in place and

medication

> can be given immediately.

> > Ask questions and be involved in your child's care.

> > If you don't think your current doctor has the knowledge and/or

> experience keep looking !

> > I will post some pictures of as soon as I have some free

time.

> > Anyone in North Carolina or Connecticut I would love to hear

from you.

> >

> > Honacher

> >

> >

> > In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time,

> carlahwll@ writes:

> > Hi everybody I have not posted in a while although I do read

> all the

> > postings and all the support we give to each other. I am having

a

> > problem with my insurance company denying nna's visits to

the

> > specialist in Boston Ma. They are making me go to a doctor who

is in my

> > network in CT. His name is Zachary Klett. He is at Yale. I have

not met

> > him yet but I suppose I need to go down and meet him. I am so

> > frustrated because I had such a comfort level with Dr sen

in

> > Boston. We were getting ready for her first surgery and now we

are

> > having to start all over again. This will be the fourth doctor

we have

> > seen. So really what I am looking for is if anyone has gone to

Yale for

> > treatment of BPES or if anyone knows Dr Klett?

> >

> > Carla and nna(2yr)

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Debbie, all of the doctors are up north that I have heard of. Dr sen in Boston and there are few in NY I will have to look up there names. I was told by one doctors office to do a google search for oculplastics. I found a boat load of names. My issue is my insurance company will not let me go out of CT. So I may be paying for the surgery out of pocket. I am definatly not going to let Dr Klett do surgery on Juli if he has only done 1 or 2 in his life. I am frustrated but I will give Dr Klett a try. Try a google search as a stepping stone. Carla and Juli debbarfoot <deb_barfoot@...> wrote: , thanks for your postings too. As my son's situation becomes more complicated, your situation encourages me to be a better advocate for him too with his doctors and insurance issues.Carla, I live in Raleigh. Like , I'd be interested too in any doctors you've heard of or your experience with any here. We're currently at Duke w/Dr. Buckley, and so far we're very comfortable with him but I didn't do much research beforehand and just want to know who's out here.Hey ! Keep me updated too! I have some questions I'll email you -Debbie > > Hey Carla & nna,> > I used to live in Connecticut. My daughter , now almost 16, was seeing Dr. Lisman in Manhattan who was referred to us and I have been EXTREMELY satisfied with the results of her 6, yes 6 , surgeries. My insurance at the time tried denying us. I filed a grievance with them stating that the doctors they wanted to have do procedures on were not experienced enough. I sent several pictures of with the grievance paperwork. They did approve us to use Dr. Lisman and paid all of the bills involved. Most insurance companied have no clue what BPES is or how rare and delicate the procedures involved are.> > was born with an extreme case of BPES including extremely small eye openings, inverted epicanthal folds,

ectropian of the lower lids, and telecanthus, She also had an case of strabismus. She also had an extremely wide bridge and a bump on her nose required a different surgeon to repair that.> > She had her first procedure at 7 months, a lid suspension., and a procedure for the strabismus. By yet another pediatric ophthalmologist !> A 11 months a repair to one of her lid suspensions. > At about 31/2 she had her double opposing z-plastys, a transnasal wiring and orbital osteotomy (actually ground away some of the bone near the bridge of her nose to make her eye sockets larger).> At 4 she had the ectropian of the lower eyelids repaired. Dr. Lisman took a crescent shaped piece of skin from behind her ears and grafted it under her eyes. She had to have her eyelids sown shut for 2 days to make sure the grafts healed correctly. That was a tough one !!> At 6 she had her slings tightened and laser dermabrasion

done on the scar tissue.> At 13 Dr. Lisman adjusted the slings, minor, and did more laser dermabrasion on scar tissue. Dr. ph McCarthy ( a world renowned facial cranial pediatric surgeon) gave her a beautiful new nose!!> She needs to go back and see Dr. Lisman, We live in North Carolina now., so we may plan that for later this year.> Overall she looks GREAT. She is a happy kid, she has lots of friends and is doing well in school.> > > Get the best doctor you can even if you have to travel.> had seen 4 or 5 doctors who were willing to do the surgery including a large children's hospital. I ask how many children have you operated on with BPES. The major children's hospital had only seen one case this severe> > in 15 years !! I paid my bill and said goodbye.> I actually got so desperate I started calling plastic surgeons in the phone book asking if anyone knew of this

syndrome or knew anyone that did. This is how we found Dr. Lisman. Dr. Lisman is a world renowned ophthalmologic plastic surgeon. He mostly does rich old women.LOL He is a specialist in BPES and sees about 10 new cases a year. So if you are in New England please consider seeing him.> After all of 's procedures I would keep her face iced around the clock. Ice reduces swelling and gets a much better result. Do not expect the nurses to do this, they do not have the time. Have the doctor write an order for pain medication BEFORE the procedure so that if your child wakes up in pain the orders are in place and medication can be given immediately.> Ask questions and be involved in your child's care.> If you don't think your current doctor has the knowledge and/or experience keep looking !> I will post some pictures of as soon as I have some free time.> Anyone in North Carolina or Connecticut I would

love to hear from you.> > Honacher> > > In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time, carlahwll@... writes:> Hi everybody I have not posted in a while although I do read all the > postings and all the support we give to each other. I am having a > problem with my insurance company denying nna's visits to the > specialist in Boston Ma. They are making me go to a doctor who is in my > network in CT. His name is Zachary Klett. He is at Yale. I have not met > him yet but I suppose I need to go down and meet him. I am so > frustrated because I had such a comfort level with Dr sen in > Boston. We were getting ready for her first surgery and now we are > having to start all over again. This will be the fourth doctor we have > seen. So really what I am looking for is if anyone has gone to Yale for > treatment of BPES or if

anyone knows Dr Klett? > > Carla and nna(2yr)> > > > > > > > > > > __________________________________________________>

[Guest guest]

Thanks for trying, Carla.

I understand your hesitance on using doctors w/little experience w/BPES. We're

switching

to an HMO in September and my fear is running into the same problem as you if we

decide

to look outside our network.

Don't worry about the NY docs for now...we're going to try Dr. Dutton at UNC too

as

suggested.

Keep us updated on what happens with Juli!

Debbie

> >

> > Hey Carla & nna,

> >

> > I used to live in Connecticut. My daughter , now almost 16, was seeing

Dr.

> Lisman in Manhattan who was referred to us and I have been EXTREMELY

satisfied

> with the results of her 6, yes 6 , surgeries. My insurance at the time tried

denying us. I

> filed a grievance with them stating that the doctors they wanted to have do

procedures

on

> were not experienced enough. I sent several pictures of with the

grievance

> paperwork. They did approve us to use Dr. Lisman and paid all of the bills

involved.

Most

> insurance companied have no clue what BPES is or how rare and delicate the

procedures

> involved are.

> >

> > was born with an extreme case of BPES including extremely small eye

openings,

> inverted epicanthal folds, ectropian of the lower lids, and telecanthus, She

also had an

> case of strabismus. She also had an extremely wide bridge and a bump on her

nose

> required a different surgeon to repair that.

> >

> > She had her first procedure at 7 months, a lid suspension., and a procedure

for the

> strabismus. By yet another pediatric ophthalmologist !

> > A 11 months a repair to one of her lid suspensions.

> > At about 31/2 she had her double opposing z-plastys, a transnasal wiring and

orbital

> osteotomy (actually ground away some of the bone near the bridge of her nose

to make

> her eye sockets larger).

> > At 4 she had the ectropian of the lower eyelids repaired. Dr. Lisman took a

crescent

> shaped piece of skin from behind her ears and grafted it under her eyes. She

had to

have

> her eyelids sown shut for 2 days to make sure the grafts healed correctly.

That was a

> tough one !!

> > At 6 she had her slings tightened and laser dermabrasion done on the scar

tissue.

> > At 13 Dr. Lisman adjusted the slings, minor, and did more laser dermabrasion

on scar

> tissue. Dr. ph McCarthy ( a world renowned facial cranial pediatric

surgeon) gave her

a

> beautiful new nose!!

> > She needs to go back and see Dr. Lisman, We live in North Carolina now., so

we may

> plan that for later this year.

> > Overall she looks GREAT. She is a happy kid, she has lots of friends and is

doing well

> in school.

> >

> >

> > Get the best doctor you can even if you have to travel.

> > had seen 4 or 5 doctors who were willing to do the surgery including a

large

> children's hospital. I ask how many children have you operated on with BPES.

The major

> children's hospital had only seen one case this severe

> >

> > in 15 years !! I paid my bill and said goodbye.

> > I actually got so desperate I started calling plastic surgeons in the phone

book asking

> if anyone knew of this syndrome or knew anyone that did. This is how we found

Dr.

> Lisman. Dr. Lisman is a world renowned ophthalmologic plastic surgeon. He

mostly does

> rich old women.LOL He is a specialist in BPES and sees about 10 new cases a

year. So if

> you are in New England please consider seeing him.

> > After all of 's procedures I would keep her face iced around the clock.

Ice reduces

> swelling and gets a much better result. Do not expect the nurses to do this,

they do not

> have the time. Have the doctor write an order for pain medication BEFORE the

procedure

> so that if your child wakes up in pain the orders are in place and medication

can be

given

> immediately.

> > Ask questions and be involved in your child's care.

> > If you don't think your current doctor has the knowledge and/or experience

keep

> looking !

> > I will post some pictures of as soon as I have some free time.

> > Anyone in North Carolina or Connecticut I would love to hear from you.

> >

> > Honacher

> >

> >

> > In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time, carlahwll@

> writes:

> > Hi everybody I have not posted in a while although I do read all the

> > postings and all the support we give to each other. I am having a

> > problem with my insurance company denying nna's visits to the

> > specialist in Boston Ma. They are making me go to a doctor who is in my

> > network in CT. His name is Zachary Klett. He is at Yale. I have not met

> > him yet but I suppose I need to go down and meet him. I am so

> > frustrated because I had such a comfort level with Dr sen in

> > Boston. We were getting ready for her first surgery and now we are

> > having to start all over again. This will be the fourth doctor we have

> > seen. So really what I am looking for is if anyone has gone to Yale for

> > treatment of BPES or if anyone knows Dr Klett?

> >

> > Carla and nna(2yr)

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> > __________________________________________________

> >

[Guest guest]

> > >

> > > Hey Carla & nna,

> > >

> > > I used to live in Connecticut. My daughter , now almost

16, was seeing Dr.

> > Lisman in Manhattan who was referred to us and I have

been EXTREMELY

> satisfied

> > with the results of her 6, yes 6 , surgeries. My insurance at the

time tried denying us. I

> > filed a grievance with them stating that the doctors they wanted

to have do procedures

> on

> > were not experienced enough. I sent several pictures of

with the grievance

> > paperwork. They did approve us to use Dr. Lisman and paid all of

the bills involved.

> Most

> > insurance companied have no clue what BPES is or how rare and

delicate the procedures

> > involved are.

> > >

> > > was born with an extreme case of BPES including extremely

small eye openings,

> > inverted epicanthal folds, ectropian of the lower lids, and

telecanthus, She also had an

> > case of strabismus. She also had an extremely wide bridge and a

bump on her nose

> > required a different surgeon to repair that.

> > >

> > > She had her first procedure at 7 months, a lid suspension., and

a procedure for the

> > strabismus. By yet another pediatric ophthalmologist !

> > > A 11 months a repair to one of her lid suspensions.

> > > At about 31/2 she had her double opposing z-plastys, a

transnasal wiring and orbital

> > osteotomy (actually ground away some of the bone near the bridge

of her nose to make

> > her eye sockets larger).

> > > At 4 she had the ectropian of the lower eyelids repaired. Dr.

Lisman took a crescent

> > shaped piece of skin from behind her ears and grafted it under

her eyes. She had to

> have

> > her eyelids sown shut for 2 days to make sure the grafts healed

correctly. That was a

> > tough one !!

> > > At 6 she had her slings tightened and laser dermabrasion done

on the scar tissue.

> > > At 13 Dr. Lisman adjusted the slings, minor, and did more laser

dermabrasion on scar

> > tissue. Dr. ph McCarthy ( a world renowned facial cranial

pediatric surgeon) gave her

> a

> > beautiful new nose!!

> > > She needs to go back and see Dr. Lisman, We live in North

Carolina now., so we may

> > plan that for later this year.

> > > Overall she looks GREAT. She is a happy kid, she has lots of

friends and is doing well

> > in school.

> > >

> > >

> > > Get the best doctor you can even if you have to travel.

> > > had seen 4 or 5 doctors who were willing to do the

surgery including a large

> > children's hospital. I ask how many children have you operated on

with BPES. The major

> > children's hospital had only seen one case this severe

> > >

> > > in 15 years !! I paid my bill and said goodbye.

> > > I actually got so desperate I started calling plastic surgeons

in the phone book asking

> > if anyone knew of this syndrome or knew anyone that did. This is

how we found Dr.

> > Lisman. Dr. Lisman is a world renowned ophthalmologic plastic

surgeon. He mostly does

> > rich old women.LOL He is a specialist in BPES and sees about 10

new cases a year. So if

> > you are in New England please consider seeing him.

> > > After all of 's procedures I would keep her face iced

around the clock. Ice reduces

> > swelling and gets a much better result. Do not expect the nurses

to do this, they do not

> > have the time. Have the doctor write an order for pain medication

BEFORE the procedure

> > so that if your child wakes up in pain the orders are in place

and medication can be

> given

> > immediately.

> > > Ask questions and be involved in your child's care.

> > > If you don't think your current doctor has the knowledge and/or

experience keep

> > looking !

> > > I will post some pictures of as soon as I have some free

time.

> > > Anyone in North Carolina or Connecticut I would love to hear

from you.

> > >

> > > Honacher

> > >

> > >

> > > In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard

Time, carlahwll@

> > writes:

> > > Hi everybody I have not posted in a while although I do read

all the

> > > postings and all the support we give to each other. I am having

a

> > > problem with my insurance company denying nna's visits to

the

> > > specialist in Boston Ma. They are making me go to a doctor who

is in my

> > > network in CT. His name is Zachary Klett. He is at Yale. I have

not met

> > > him yet but I suppose I need to go down and meet him. I am so

> > > frustrated because I had such a comfort level with Dr sen

in

> > > Boston. We were getting ready for her first surgery and now we

are

> > > having to start all over again. This will be the fourth doctor

we have

> > > seen. So really what I am looking for is if anyone has gone to

Yale for

> > > treatment of BPES or if anyone knows Dr Klett?

> > >

> > > Carla and nna(2yr)

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > > __________________________________________________

> > >

[Guest guest]

Hi my name is Ally,

Im 38 with bleph as do 2 of my 4 children.I had the same sort of surgery as your daughter when I was a child.Lucky for me I never wore glasses only sunglasses,I think my surgery was called wolf grafting , sounds terrible doesnt it ? My scaring was quite extensive , I still have the scars from this surgery.Like your daughter the skin was taken from one ear.I know with time the scars fade ,as a mother my heart goes out to you and your family.Amazingly enough people with bleph seem to have big hearts with fantastic personalites.All the best to you and your daughter

blepharophimosis Re:Doctor issues & 's story

> > > > > > Hey Carla & nna,> > > > > > I used to live in Connecticut. My daughter , now almost 16, was seeing Dr. > > Lisman in Manhattan who was referred to us and I have been EXTREMELY > satisfied > > with the results of her 6, yes 6 , surgeries. My insurance at the time tried denying us. I > > filed a grievance with them stating that the doctors they wanted to have do procedures > on > > were not experienced enough. I sent several pictures of with the grievance > > paperwork. They did approve us to use Dr. Lisman and paid all of the bills involved. > Most > > insurance companied have no clue what BPES is or how rare and delicate the procedures > > involved are.> > > > > > was born with an extreme case of BPES including extremely small eye openings, > > inverted epicanthal folds, ectropian of the lower lids, and telecanthus, She also had an > > case of strabismus. She also had an extremely wide bridge and a bump on her nose > > required a different surgeon to repair that.> > > > > > She had her first procedure at 7 months, a lid suspension., and a procedure for the > > strabismus. By yet another pediatric ophthalmologist !> > > A 11 months a repair to one of her lid suspensions. > > > At about 31/2 she had her double opposing z-plastys, a transnasal wiring and orbital > > osteotomy (actually ground away some of the bone near the bridge of her nose to make > > her eye sockets larger).> > > At 4 she had the ectropian of the lower eyelids repaired. Dr. Lisman took a crescent > > shaped piece of skin from behind her ears and grafted it under her eyes. She had to > have > > her eyelids sown shut for 2 days to make sure the grafts healed correctly. That was a > > tough one !!> > > At 6 she had her slings tightened and laser dermabrasion done on the scar tissue.> > > At 13 Dr. Lisman adjusted the slings, minor, and did more laser dermabrasion on scar > > tissue. Dr. ph McCarthy ( a world renowned facial cranial pediatric surgeon) gave her > a > > beautiful new nose!!> > > She needs to go back and see Dr. Lisman, We live in North Carolina now., so we may > > plan that for later this year.> > > Overall she looks GREAT. She is a happy kid, she has lots of friends and is doing well > > in school.> > > > > > > > > Get the best doctor you can even if you have to travel.> > > had seen 4 or 5 doctors who were willing to do the surgery including a large > > children's hospital. I ask how many children have you operated on with BPES. The major > > children's hospital had only seen one case this severe> > > > > > in 15 years !! I paid my bill and said goodbye.> > > I actually got so desperate I started calling plastic surgeons in the phone book asking > > if anyone knew of this syndrome or knew anyone that did. This is how we found Dr. > > Lisman. Dr. Lisman is a world renowned ophthalmologic plastic surgeon. He mostly does > > rich old women.LOL He is a specialist in BPES and sees about 10 new cases a year. So if > > you are in New England please consider seeing him.> > > After all of 's procedures I would keep her face iced around the clock. Ice reduces > > swelling and gets a much better result. Do not expect the nurses to do this, they do not > > have the time. Have the doctor write an order for pain medication BEFORE the procedure > > so that if your child wakes up in pain the orders are in place and medication can be > given > > immediately.> > > Ask questions and be involved in your child's care.> > > If you don't think your current doctor has the knowledge and/or experience keep > > looking !> > > I will post some pictures of as soon as I have some free time.> > > Anyone in North Carolina or Connecticut I would love to hear from you.> > > > > > Honacher> > > > > > > > > In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard Time, carlahwll@ > > writes:> > > Hi everybody I have not posted in a while although I do read all the > > > postings and all the support we give to each other. I am having a > > > problem with my insurance company denying nna's visits to the > > > specialist in Boston Ma. They are making me go to a doctor who is in my > > > network in CT. His name is Zachary Klett. He is at Yale. I have not met > > > him yet but I suppose I need to go down and meet him. I am so > > > frustrated because I had such a comfort level with Dr sen in > > > Boston. We were getting ready for her first surgery and now we are > > > having to start all over again. This will be the fourth doctor we have > > > seen. So really what I am looking for is if anyone has gone to Yale for > > > treatment of BPES or if anyone knows Dr Klett? > > > > > > Carla and nna(2yr)> > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > __________________________________________________> > >

[Guest guest]

>Her scars have faded a bit but it is still thick under her eyes. Doing

research on BPES, because we just found out the name of the eye disorder. I am

hoping she has Type II, because she is a caring individual who will make a great

mother someday. She has been wearing glasses since she was 3. Her vision is

poor without them. Thank you for writing back and letting me know that there

are people out there like her. I might have her join the group because I think

it might make her feel like she isn't all alone with this. There are no people

we know with the disorder. Thank you again!

From: MK <kaldi@...>

>Date: 2006/08/14 Mon AM 06:09:24 CDT

>blepharophimosis

>Subject: Re: blepharophimosis Re:Doctor issues & 's story

>

>Hi my name is Ally,Im 38 with bleph as do 2 of my 4 children.I had the same

sort of surgery as your daughter when I was a child.Lucky for me I never wore

glasses only sunglasses,I think my surgery was called wolf grafting , sounds

terrible doesnt it ? My scaring was quite extensive , I still have the scars

from this surgery.Like your daughter the skin was taken from one ear.I know with

time the scars fade ,as a mother my heart goes out to you and your

family.Amazingly enough people with bleph seem to have big hearts with fantastic

personalites.All the best to you and your daughter blepharophimosis Re:Doctor issues &

's story

>

>

>> > >

>> > > Hey Carla & nna,

>> > >

>> > > I used to live in Connecticut. My daughter , now almost

>16, was seeing Dr.

>> > Lisman in Manhattan who was referred to us and I have

>been EXTREMELY

>> satisfied

>> > with the results of her 6, yes 6 , surgeries. My insurance at the

>time tried denying us. I

>> > filed a grievance with them stating that the doctors they wanted

>to have do procedures

>> on

>> > were not experienced enough. I sent several pictures of

> with the grievance

>> > paperwork. They did approve us to use Dr. Lisman and paid all of

>the bills involved.

>> Most

>> > insurance companied have no clue what BPES is or how rare and

>delicate the procedures

>> > involved are.

>> > >

>> > > was born with an extreme case of BPES including extremely

>small eye openings,

>> > inverted epicanthal folds, ectropian of the lower lids, and

>telecanthus, She also had an

>> > case of strabismus. She also had an extremely wide bridge and a

>bump on her nose

>> > required a different surgeon to repair that.

>> > >

>> > > She had her first procedure at 7 months, a lid suspension., and

>a procedure for the

>> > strabismus. By yet another pediatric ophthalmologist !

>> > > A 11 months a repair to one of her lid suspensions.

>> > > At about 31/2 she had her double opposing z-plastys, a

>transnasal wiring and orbital

>> > osteotomy (actually ground away some of the bone near the bridge

>of her nose to make

>> > her eye sockets larger).

>> > > At 4 she had the ectropian of the lower eyelids repaired. Dr.

>Lisman took a crescent

>> > shaped piece of skin from behind her ears and grafted it under

>her eyes. She had to

>> have

>> > her eyelids sown shut for 2 days to make sure the grafts healed

>correctly. That was a

>> > tough one !!

>> > > At 6 she had her slings tightened and laser dermabrasion done

>on the scar tissue.

>> > > At 13 Dr. Lisman adjusted the slings, minor, and did more laser

>dermabrasion on scar

>> > tissue. Dr. ph McCarthy ( a world renowned facial cranial

>pediatric surgeon) gave her

>> a

>> > beautiful new nose!!

>> > > She needs to go back and see Dr. Lisman, We live in North

>Carolina now., so we may

>> > plan that for later this year.

>> > > Overall she looks GREAT. She is a happy kid, she has lots of

>friends and is doing well

>> > in school.

>> > >

>> > >

>> > > Get the best doctor you can even if you have to travel.

>> > > had seen 4 or 5 doctors who were willing to do the

>surgery including a large

>> > children's hospital. I ask how many children have you operated on

>with BPES. The major

>> > children's hospital had only seen one case this severe

>> > >

>> > > in 15 years !! I paid my bill and said goodbye.

>> > > I actually got so desperate I started calling plastic surgeons

>in the phone book asking

>> > if anyone knew of this syndrome or knew anyone that did. This is

>how we found Dr.

>> > Lisman. Dr. Lisman is a world renowned ophthalmologic plastic

>surgeon. He mostly does

>> > rich old women.LOL He is a specialist in BPES and sees about 10

>new cases a year. So if

>> > you are in New England please consider seeing him.

>> > > After all of 's procedures I would keep her face iced

>around the clock. Ice reduces

>> > swelling and gets a much better result. Do not expect the nurses

>to do this, they do not

>> > have the time. Have the doctor write an order for pain medication

>BEFORE the procedure

>> > so that if your child wakes up in pain the orders are in place

>and medication can be

>> given

>> > immediately.

>> > > Ask questions and be involved in your child's care.

>> > > If you don't think your current doctor has the knowledge and/or

>experience keep

>> > looking !

>> > > I will post some pictures of as soon as I have some free

>time.

>> > > Anyone in North Carolina or Connecticut I would love to hear

>from you.

>> > >

>> > > Honacher

>> > >

>> > >

>> > > In a message dated 7/25/2006 9:22:52 A.M. Eastern Standard

>Time, carlahwll@

>> > writes:

>> > > Hi everybody I have not posted in a while although I do read

>all the

>> > > postings and all the support we give to each other. I am having

>a

>> > > problem with my insurance company denying nna's visits to

>the

>> > > specialist in Boston Ma. They are making me go to a doctor who

>is in my

>> > > network in CT. His name is Zachary Klett. He is at Yale. I have

>not met

>> > > him yet but I suppose I need to go down and meet him. I am so

>> > > frustrated because I had such a comfort level with Dr sen

>in

>> > > Boston. We were getting ready for her first surgery and now we

>are

>> > > having to start all over again. This will be the fourth doctor

>we have

>> > > seen. So really what I am looking for is if anyone has gone to

>Yale for

>> > > treatment of BPES or if anyone knows Dr Klett?

>> > >

>> > > Carla and nna(2yr)

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > >

>> > > __________________________________________________

>> > >