Re: When is too early for surgery??

[Guest guest]

I don't understand that theory that older is better. Why can't you have two surgeries. One when they are young and then a "touch up" when they get older. You're talking about the "fold" surgery right?

Pam

[Guest guest]

My sons have had many surgeries ....They started as soon as they started tilting their heads...they had no problems before that. Then every few years as they grew it drooped. Between us and their surgegeon we would hold out as long as possible then when other factors like tilting, nunt etc. came into factor we knew it was time.

From the sounds of it do you all expect/or have had only one surgery that lasted forever without drooping ? too will have a few I assume as she grows ? i thought that was normal...We see two top sepcialist who deal with several bleoh patients so i have 100% faith in them. obriengroup@... wrote:

I don't understand that theory that older is better. Why can't you have two surgeries. One when they are young and then a "touch up" when they get older. You're talking about the "fold" surgery right?

Pam<a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a>

for Good Click here to donate to the Hurricane Katrina relief effort.

[Guest guest]

I asked our doctor here what to expect with Micah. I

was told IF ptosis ever returns they would simply go

into the incisions above the eyebrow and " tighten " the

silicone rods (slings) and that would be it. I would

love to hear from others about their experience with

this. IF the ptosis returned, how long did it take?

Did it change as you/your children grew? Has anyone

ever just had their " slings adjusted " ?

Thank you!

April

--- Sharon A <besilly12000@...> wrote:

> My sons have had many surgeries ....They started as

> soon as they started tilting their heads...they had

> no problems before that. Then every few years as

> they grew it drooped. Between us and their surgegeon

> we would hold out as long as possible then when

> other factors like tilting, nunt etc. came into

> factor we knew it was time.

>

> From the sounds of it do you all expect/or have had

> only one surgery that lasted forever without

> drooping ? too will have a few I assume as

> she grows ? i thought that was normal...We see two

> top sepcialist who deal with several bleoh patients

> so i have 100% faith in them.

>

> obriengroup@... wrote:

> I don't understand that theory that older is better.

> Why can't you have two surgeries. One when they are

> young and then a " touch up " when they get older.

> You're talking about the " fold " surgery right?

>

> Pam

>

>

>

[Guest guest]

Some people need many more surgeries than two, and if you begin with surgery

very soon, the possibilities of needing more surgeries is very high, because

children faces and bones change a lot with growing. Surgery and anaesthesia

has more risks in young children. Moreover surgery is tecnically easier in

older children, so if it is not any trouble with vision or excessive head

tilting some surgeons prefer to wait.

>From: obriengroup@...

>Reply-blepharophimosis

>blepharophimosis

>Subject: Re: blepharophimosis When is too early for surgery??

>Date: Wed, 28 Sep 2005 09:48:01 EDT

>

>I don't understand that theory that older is better. Why can't you have two

>surgeries. One when they are young and then a " touch up " when they get

>older.

>You're talking about the " fold " surgery right?

>

>Pam

[Guest guest]

Hi

Perhaps this extract from an article will help you. The full article can be found here:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

Shireen

(extract below)

Treatment of Manifestations

Management requires the input of several specialists including a geneticist, pediatric ophthalmologist, orthoptist, oculoplastic surgeon, pediatric endocrinologist, reproductive endocrinologist, and gynecologist.

Timing of eyelid surgery is controversial; it involves weighing the balance of early surgery to prevent deprivation amblyopia and late surgery to allow for more reliable ptosis measurements, the latter of which provides a better surgical outcome. Surgery is hampered by the dysplastic structure of the eyelids [beckingsale et al 2003]. The surgical management traditionally involves a medial canthoplasty for correction of the blepharophimosis, epicanthus inversus, and telecanthus at three to five years of age, followed about a year later by ptosis correction, which usually requires a brow suspension procedure. Autogeneous fascia lata gives excellent results, but is not reliable before 3.5 to four years of age because of a lack of available autogeneous fascia lata. In children below this age, silastic slings give good results and are easily adjusted if necessary.

For individuals with severe ptosis, surgical ptosis repair is recommended before the age of three years, followed by medial canthoplasty if necessary.

For individuals with moderate ptosis, correction of ptosis may be deferred until the age of five years when surgery is often recommended for cosmetic reasons before starting school.

[Guest guest]

Boy, I feel so uneducated. I don't know enough still.

kk

[Guest guest]

Thanks Shireen.

My daughter had a very severe case of BPES. Tiny tiny eyes. We did the epicantal fold surgery at 3 yrs. She was having such trouble with her left eye, that they needed to open it up more. Now she just turned four (yesterday) and has been patch free for almost a year.

We had testing done for her with a genetict who said she was producing healthy eggs. They did not however test to see that she had BPES I or II. They didn't know to do this for premature ovarian failure. Does any have the number of the doctor in Belgium for the testing. Sorry, this may have been posted earlier, I cannot keep up.

Thanks to everyone. This is such a fabulous network.

Pam

[Guest guest]

Thanks again Shireen for everything.

[Guest guest]

Hi Pam

Here is the link:

http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html

These are the people:

Diane Beysen, MD Center for Medical Genetics Elfride De Baere, MD, PhD Center for Medical Genetics Ghent University Hospital Ghent, Belgium

Link which tells you about Dr De Baere

http://medgen.ugent.be/CMGG/ENG/index.php?pag=FichePersoneel & pers_id=7

have a look here too:

http://medgen.ugent.be/CMGG/ENG/index.php?pag=Onderzoek & topicID=9

I am 44 now, I had surgery when I was 2.5 years old. I tilted my head back quite a bit. However, techniques have imporved vastly recently -so my personal experience may not be relevant.

Take care

Shireen

From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of obriengroup@...Sent: 30 September 2005 16:10blepharophimosis Subject: Re: blepharophimosis When is too early for surgery??

Thanks Shireen.

My daughter had a very severe case of BPES. Tiny tiny eyes. We did the epicantal fold surgery at 3 yrs. She was having such trouble with her left eye, that they needed to open it up more. Now she just turned four (yesterday) and has been patch free for almost a year.

We had testing done for her with a genetict who said she was producing healthy eggs. They did not however test to see that she had BPES I or II. They didn't know to do this for premature ovarian failure. Does any have the number of the doctor in Belgium for the testing. Sorry, this may have been posted earlier, I cannot keep up.

Thanks to everyone. This is such a fabulous network.

Pam