Hi to all BPES friends !

[Guest guest]

Dear Friends,

my 3 yrs old son Carlo inherited BPES from me. Now I'm 46 and I never

had surgery. Recently, in routine control, my son was found to be 4/10

in the left eye and 8/10 in the right one.

Surgery, then, should be performed more for a " functional " reason than

for a " cosmetic " reason.

So I would ask you this: in your experience, does the sight effectively

improve after surgery ? Could sight improve over the years even without

surgery (glasses, contact lens or else) ?

One more question: after surgery, will eyes close in a correct fashion

or will they remain " semiclosed " ?

Is there any picture in " our " website of kids who had surgery from Dr.

Yassir M S Abou-Rayyah or Mr Collin ?

Thank you very much for your help and… keep in touch !

Giro from Italy

[Guest guest]

Hello, My daughter's peripheral vision improved greatly after her lid surgery. Often before her surgery, when she was a beginning walker, she would bump the top of her head into things slightly above her vision that she was not able to see due to the lids not opening enough. She has worn glasses since she was about 4 years old but both her brother and her father without BPES have worn glasses since an early age. At times, her eyes do not always close completely and she uses an eye ointment at night before she goes to sleep in order to keep her eyes moist and to keep them from being irritated. I know that the surgery was a good thing for her since we were able to protect her vision. Best of luck. girodoc <giro.martino@...> wrote: Dear Friends,my 3 yrs old son Carlo inherited BPES from me. Now I'm 46 and I never had surgery. Recently, in routine control, my son was found to be 4/10 in the left eye and 8/10 in the right one.Surgery, then, should be performed more for a "functional" reason than for a "cosmetic" reason.So I would ask you this: in your experience, does the sight effectively improve after surgery ? Could sight improve over the years even without surgery (glasses, contact lens or else) ?One more question: after surgery, will eyes close in a correct fashion or will they remain "semiclosed" ?Is there any picture in "our" website of kids who had surgery from Dr. Yassir M

S Abou-Rayyah or Mr Collin ?Thank you very much for your help and… keep in touch !Giro from Italy

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[Guest guest]

Dear Giro

In answer to your questions:

Firstly – there is no substitute for professional advice.

Hearing about other people’s experiences is helpful, but it should be

considered as a shared experiences rather than a recommendation for a treatment

option.

Secondly – we are all very different. Some little babies

need urgent attention because of the severity of the condition. Other children

can wait till they are older, as benefits for them, and the treatment option for

an older child is different.

Your question

So I would ask you this: in your experience, does the sight

effectively

improve after surgery ?

Asking us is asking the wrong person. The improvement for very

young babies is difficult for a parent to measure, because young babies

are lesser able to communicate. Many of the people who undergo surgery are

young, and some older. However, the experience of parents and carers is

certainly very important. So a medical person does the eye checks to see

if vision is less impaired, and a parent can provide feedback on behaviour. You

will hear from parents on this group – but only a medic can give you the

scientific reason for why the surgery improves the vision, and even then, it

will be specific for your little Carlo. (I am sure you appreciate this …

but I feel I should mention it because it is important to emphasise the balance

between people’s experience, and professional opinion).

Your question

Could sight improve over the years even without

surgery (glasses, contact lens or else) ?

This is a question for a specialist.

Your question

One more question: after surgery, will eyes close in a

correct fashion

or will they remain " semiclosed " ?

This is a question for a specialist. There are several

techniques, each of us is different. So it depends on the person and the

treatment provided. I can tell you that for me my eyes are slightly open –

but you should not pay any attention to that! I was first operated on in

1963!!! Things have changed so much since then. Nowadays for some people

the surgery is a day in hospital, and go home at the end of the day. For me, I

was in hospital for 2 weeks.

Is there any picture in " our " website of kids who

had surgery from Dr.

Yassir M S Abou-Rayyah or Mr Collin ?

There are many many people who have been treated by Mr Collin.

He is one of the top 5 ocular plastic surgeons in the world.

Take a look at the database section on the site, you can see

then names of the doctors, and then you can look at the folders with the pictures.

But please remember – each of us is different. Mr Abou-Rayyah has

been seen by many people here too. I am told that he worked very closely with

Mr Colin. Try searching for his name in this site and you can see the relevant

posts. I have met 2 young girls who had surgery performed by him –

the result is amazing.

I really hope you find some answers, and a good doctor to help

you decide the best treatment options.

Take care

Shireen Mohandes

London England

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of girodoc

Sent: 06 April 2008 16:14

blepharophimosis

Subject: blepharophimosis Hi to all BPES friends !

Dear Friends,

my 3 yrs old son Carlo inherited BPES from me. Now I'm 46 and I never

had surgery. Recently, in routine control, my son was found to be 4/10

in the left eye and 8/10 in the right one.

Surgery, then, should be performed more for a " functional " reason

than

for a " cosmetic " reason.

So I would ask you this: in your experience, does the sight effectively

improve after surgery ? Could sight improve over the years even without

surgery (glasses, contact lens or else) ?

One more question: after surgery, will eyes close in a correct fashion

or will they remain " semiclosed " ?

Is there any picture in " our " website of kids who had surgery from

Dr.

Yassir M S Abou-Rayyah or Mr Collin ?

Thank you very much for your help and… keep in touch !

Giro from Italy

[Guest guest]

Giro, I think this is a constant learning process for everyone involved. Also new techniques are often more successful than those previously used. Prior to our son having surgery at 6 months of age (he is now 12 yrs). We were told poor test results from a professional eye exam and particular eye opening measurements were the two things to determine necessity of surgery. Also if the lids are not open enough during the early years the retina cannot learn to process light correctly therefore even if the lids are opened at a later date the eyeball appears to focus at a tilt ( this would be similar to the chin tilt that is seen in people with uncorrected BPES). Recently I was told that children's vision changes frequently in their younger years. Our son has annual check-ups to keep tabs. Two years ago he dipped just below 20/20 and was given glasses for reading, or as needed. At the next annual check-up

he was back to 20/20(that would be for both eyes). Do your research on the Internet and go to an additional doctor or more until you are confident you have been given the best information possible. Good Luck, Emalee Barrow Colorado, U.S.A.girodoc <giro.martino@...> wrote: Dear Friends,my 3 yrs old son Carlo inherited BPES from me. Now I'm 46 and I never had surgery. Recently, in routine control, my son was found to be 4/10 in the left eye and 8/10 in the right

one.Surgery, then, should be performed more for a "functional" reason than for a "cosmetic" reason.So I would ask you this: in your experience, does the sight effectively improve after surgery ? Could sight improve over the years even without surgery (glasses, contact lens or else) ?One more question: after surgery, will eyes close in a correct fashion or will they remain "semiclosed" ?Is there any picture in "our" website of kids who had surgery from Dr. Yassir M S Abou-Rayyah or Mr Collin ?Thank you very much for your help and… keep in touch !Giro from ItalyEmalee Barrow

You rock. That's why Blockbuster's offering you one month of Blockbuster Total Access, No Cost.

[Guest guest]

Hi

Giro

Here

is some information that may help you  …

I

don’t know the other four – but I know that when another Italian

couple visited Mr Colin in London, at his private clinic, he gave the name for

some Italian Ocular Plastic surgeons to the Italian couple, I cannot remember

the details, but it might be that he either worked with them or trained them. 

You may like to get in touch with them. They live in Milan, as do another

couple. I met them about 3 years ago in Milan. Both of them have little girls.

Also

– take a look at this article:

http://www.emedicine.com/ent/topic97.htm

As

it is aimed at medics you will see that it is very detailed.

You

may also like to try to look at this book

A

Manual of Systematic Eyelid Surgery

http://www.amazon.com/Manual-Systematic-Eyelid-Surgery/dp/0750645504

And

this book

Colour

Atlas of Ophthalmic Plastic Surgery with DVD (Hardcover)

http://www.amazon.com/Colour-Atlas-Ophthalmic-Plastic-Surgery/dp/0750688602/ref=pd_bxgy_b_img_b

Ciao

Shireen

Mohandes

London,

England

 

From: blepharophimosis

[mailto:blepharophimosis ] On Behalf Of giro.martino@...

Sent: 27 April 2008 09:05

blepharophimosis

Subject: R: blepharophimosis Hi to all BPES friends !

Dear Shireen and Emalee,

thank you for your exhaustive and very helpful answer and sorry for

my delay.

I do agree that " there is no substitute for professional advice " (I

am a Doctor !) but sharing experiences can truly help parents to

decide. In you letter you mention " the top 5 plastic suregeons

in the world " : could you please tell me who are the others ?

Thank you again and.... ciao !

Giro (from Italy)

Da:

blepharophimosis [mailto:blepharophimosis ] Per

conto di Shireen Mohandes

Inviato: martedì 8 aprile 2008 9.03

A: blepharophimosis

Oggetto: RE: blepharophimosis Hi to all BPES friends !

Dear Giro

In answer to your questions:

Firstly – there is no substitute

for professional advice. Hearing about other people’s experiences is

helpful, but it should be considered as a shared experiences rather than a

recommendation for a treatment option.

Secondly – we are all very

different. Some little babies need urgent attention because of the severity of

the condition. Other children can wait till they are older, as benefits for

them, and the treatment option for an older child is different.

Your question

So

I would ask you this: in your experience, does the sight effectively

improve after surgery ?

Asking us is asking the wrong person.

The improvement for very young babies is difficult for a parent to

measure, because young babies are lesser able to communicate. Many of the

people who undergo surgery are young, and some older. However, the experience

of parents and carers is certainly very important. So a medical person

does the eye checks to see if vision is less impaired, and a parent can provide

feedback on behaviour. You will hear from parents on this group – but

only a medic can give you the scientific reason for why the surgery improves

the vision, and even then, it will be specific for your little Carlo. (I

am sure you appreciate this … but I feel I should mention it because it

is important to emphasise the balance between people’s experience, and

professional opinion).

Your question

Could

sight improve over the years even without

surgery (glasses, contact lens or else) ?

This is a question for a specialist.

Your question

One

more question: after surgery, will eyes close in a correct fashion

or will they remain " semiclosed " ?

This is a question for a specialist.

There are several techniques, each of us is different. So it depends on the

person and the treatment provided. I can tell you that for me my eyes are

slightly open – but you should not pay any attention to that! I was first

operated on in 1963!!! Things have changed so much since then. Nowadays

for some people the surgery is a day in hospital, and go home at the end of the

day. For me, I was in hospital for 2 weeks.

Is

there any picture in " our " website of kids who had surgery from Dr.

Yassir M S Abou-Rayyah or Mr Collin ?

There are many many people who have been

treated by Mr Collin. He is one of the top 5 ocular plastic surgeons in the

world.

Take a look at the database section on

the site, you can see then names of the doctors, and then you can look at the

folders with the pictures. But please remember – each of us is

different. Mr Abou-Rayyah has been seen by many people here too. I am

told that he worked very closely with Mr Colin. Try searching for his name in

this site and you can see the relevant posts. I have met 2 young girls

who had surgery performed by him – the result is amazing.

I really hope you find some answers, and

a good doctor to help you decide the best treatment options.

Take care

Shireen Mohandes

London England

From: blepharophimosis [mailto:blepharophimosis ]

On Behalf Of girodoc

Sent: 06 April 2008 16:14

blepharophimosis

Subject: blepharophimosis Hi to all BPES friends !

Dear Friends,

my 3 yrs old son Carlo inherited BPES from me. Now I'm 46 and I never

had surgery. Recently, in routine control, my son was found to be 4/10

in the left eye and 8/10 in the right one.

Surgery, then, should be performed more for a " functional " reason

than

for a " cosmetic " reason.

So I would ask you this: in your experience, does the sight effectively

improve after surgery ? Could sight improve over the years even without

surgery (glasses, contact lens or else) ?

One more question: after surgery, will eyes close in a correct fashion

or will they remain " semiclosed " ?

Is there any picture in " our " website of kids who had surgery from

Dr.

Yassir M S Abou-Rayyah or Mr Collin ?

Thank you very much for your help and… keep in touch !

Giro from Italy

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