Re: Update on Alyssa

[Guest guest]

bobjnr <bobjnr@...> wrote:

We saw her surgeon today, who is going to do surgery in January as soon as he can, to temp sling her eye lids which are beginning to affect her sight. He will follow with correcting the epicanthus folds approx 3 months later. His decision to do the lids first, was because he doesn't wish to wait another 3 months if he does the folds first. I would like to know what everyones opinions are on this and if it matters in which order these procedures are done?

He is also talking about doing some 'cosmetic' work on the outer corners of her eyes as she gets older. I haven't heard of this before and would like some feedback on this as well if any of you are familiar with this.

Thankyou,

[Guest guest]

bobjnr wrote:

> We saw her surgeon today, who is going to do surgery in January as

> soon as he can, to temp sling her eye lids which are beginning to

> affect her sight. He will follow with correcting the epicanthus

> folds approx 3 months later. His decision to do the lids first, was

> because he doesn't wish to wait another 3 months if he does the folds

> first. I would like to know what everyones opinions are on this and

> if it matters in which order these procedures are done?

My assumption is that the ptosis is corrected first if it's affecting

sight (the other things affect sight to a much lesser extent). If not,

there's possibly a case for doing the epicanthal folds or

blepharphimosis/telecanthus/epicanthus-inversus first, since then the

subsequent ptosis correction will be more effective since there's a

bigger eye opening (i.e. more/looser eyelid) to work with. Maybe also

the bleph/tele correction if done after the ptosis might affect the

sling since the eyelids are then different size & shape?

What do the experts say? Let's see:

Oley & Baraitser [JMG 1988]: " ...most seem to involve initial canthal

surgery to improve the blepharophimosis before ptosis correction is

possible [ref: Elliot & Wallace, Br J Plast Surg 1986] "

Speaking of Elliot & Wallace (article well worth tracking down) - they

say: (after describing an extended family in NZ with BPEI) " ...[in mild

cases] canthal surgery is necessary ... to open the palpebral fissure

sufficiently to allow correction of the associated ptosis. In the most

severe cases surgery to both canthi is necessary... " (which might also

answer your question below). They then describe how in severe cases some

canthal surgery methods can make ptosis worse, so maybe another reason

for fixing that first. Also " Ptosis surgery is usually performed after

waiting for the soft tissue relaxation which follows canthal surgery "

And " More recently, combined surgery has been performed in children with

less severe manifestations of the syndrome ...[soutar, 1984]

The others (Mustarde, s, , Callahan, Spaeth, Nowinski, etc

etc) say basically the same thing. If necessary, some do a temporary

ptosis correction to allow sight to develop normally, then later, after

fixing the bleph/epicanthus-inversus, they do another 'definitive'

ptosis correction.

Spaeth [AJO, 1956] also says " The ptosis may or may not be corrected at

the same operation. The epicanthus, though, should be corrected first.

The condition of the levator and of the superior rectus muscles controls

the technique used in the correction of the ptosis. "

> He is also

> talking about doing some 'cosmetic' work on the outer corners of her

> eyes as she gets older. I haven't heard of this before and would

> like some feedback on this as well if any of you are familiar with

> this. Thankyou,

First, see above. Some surgeons have written about outer canthal work.

Second, there are lots of sundry cosmetic (and otherwise necessary)

things that surgeons might do to 'tidy up' or 'fine tune' a BPEI repair.

Each person is different in what might be required here. In my case, it

was squint (alignment), tearduct moves, scar removal, etc. In my son it

was entropion repair (and nothing else, not even bleph or ptosis

repair). See how it goes when she's older - might not be necessary by then.

Hope this has helped.

Rob

[Guest guest]

Hi and Rob,

We hope everything goes well with Alyssa'a surgery next week! We'll be thinking of you, Let us know how everything goes ok!!! This is her very 1st surgery right?

Leanne and (CHCH)

-- blepharophimosis Update on Alyssa

Hi everyone and to all the new members. For some reason we were locked out of , and only just got back again so have missed messages for the last few weeks.

For those who aren't familiar, Alyssa is our 19 month old with BPES and Duanes Syndromes. The first in our family to have BPES.

We had a consultation with Alyssa's surgeon today and he has scheduled surgery to do her epicanthal folds next week (the 24th June) He is going to use the "Roveda procedure". We would love to hear from anyone with info about, or has had this particular procedure done? We are concerned about the amount of different procedures for the same effect, and would like to know if this is one of the widely used methods.

Afterwards should we expect days of screaming from the pain? We are also concerned that she might rub or fall and pull all the stitches etc. We've read your posts regarding this and understand that little ones very quickly find out it is too sore to touch and this deters them from rubbing their eyes, but has anyone experienced the worst and had to go back to surgery?

We are (as you can tell) anxious about her first surgery. Your replies are much appreciated. thanks.

and Rob

[Guest guest]

> We had a consultation with Alyssa's surgeon today and he has

> scheduled surgery to do her epicanthal folds next week (the 24th

> June) He is going to use the " Roveda procedure " . We would love to

> hear from anyone with info about, or has had this particular

> procedure done? We are concerned about the amount of different

> procedures for the same effect, and would like to know if this is one

> of the widely used methods.

Sorry, I've never heard of it before. It was first described in the

following article:

Roveda JM: " Epicanthus et Blepharophimosis, notre technique du

correction. " Ann d'Ocul 1967;200;551-555

Which, even if one could find it, wouldn't help much unless one knows

(medical!) French!?

I have two articles that refer to it briefly, in a rundown of the

history of BPEI repair methods, as follows:

" Roveda combined a crescentic incision with a Y-to-V technique,

but scarring and secondary folds remained a problem. "

( & Nowinski: " The Five-Fold Technique for Blepharophimosis. "

Arch Ophthalmol, Vol 107, March 1989) and (Nowinski: " Epicanthal Folds

and Blepharophimosis: A New Technique. " Trans Pa Acad Ophthalmol

Otolaryngol. 1988;40:706-12)

Excellent articles. Well worth tracking down (or making your surgeon

track down). Bear in mind that Nowinski is pushing his own method there,

so it's not surprising if he bags everyone else's (or am I being a cynic

again?) somewhat.

None of my other articles (not extensive or exhaustive I must admit),

post-1967, mention Roveda.

> Afterwards should we expect days of screaming from the pain?

I'd expect some wimpering, perhaps, from discomfort and/or dull pain,

but not screaming. Some itching, prob'ly, as the skin heals. Getting the

stitches out later on, of course, will be ... challenging.

> We are

> also concerned that she might rub or fall and pull all the stitches

> etc. We've read your posts regarding this and understand that little

> ones very quickly find out it is too sore to touch and this deters

> them from rubbing their eyes, but has anyone experienced the worst

> and had to go back to surgery?

My mother tells me she used to tape toilet rolls (or the tubes in the

centres at least) to the inside of my elbows so I could move and bend my

arms, but not enough to touch my stitches. Diabolical, but worth a try?

> We are (as you can tell) anxious about her first surgery. Your

> replies are much appreciated. thanks.

Pre-surgery, I always try to fore-arm with as much information as

possible about what will be done, and try to be as comfortable as

possible in my own mind about what to expect, and that it's the best way

to proceed. Has my surgeon done this procedure before? (If not, wrong

surgeon.) Shown me before/after pictures? Explained the relative merits

of the alternatives and why he/she chose this one? I ask for copies of

his/her sources of information, perhaps, too.

I don't know the rationale behind the urgency (24 June seems pretty

soon) in your case. If possible, I always take the time to do the

research, and be comfortable before committing.

I found the anxiety can't be avoided, but understanding what's happening

was some comfort. God bless.

> and Rob

(Janet and) Rob

[Guest guest]

Hi, & Rob,

Guess what? My 3 year old just had his epicanthal fold surgery

YESTERDAY! So far so good. His surgeon called it " medial

canthoplasty & medial canthaplexy " which means they made some small

cuts in the corner to address the e-fold & then pulled his tendons

tighter to bring the corner of the eyes closer to his nose. The

surgery took 2 hours, recovery was longer. We were at the hospital

all day, but it was outpatient surgery.

He is NOT touching his eyes at all. We are putting ointment in the

corners and giving him regular tylenol. Last night we put a soft

splint on each arm to prevent him from bending them and messing with

his eyes. He slept through the night, as usual. Now he's eating a

HUGE breakfast with his eyes barely open! Yelling, laughing, singing

just like usual, if maybe a little slower on his feet.

I'll try to post a picture today.

His surgeon is Dr. Lissner of Chicago and he is an ocularplastic

surgeon. You could give him call for a consultation. We did that- we

called Doctors from out of state to check on him, and everyone was

very honest & accomodating

Have any more questions? Just ask!

Sari

> Hi everyone and to all the new members. For some reason we were

locked out of , and only just got back again so have missed

messages for the last few weeks.

> For those who aren't familiar, Alyssa is our 19 month old with BPES

and Duanes Syndromes. The first in our family to have BPES.

>

> We had a consultation with Alyssa's surgeon today and he has

scheduled surgery to do her epicanthal folds next week (the 24th

June) He is going to use the " Roveda procedure " . We would love to

hear from anyone with info about, or has had this particular procedure

done? We are concerned about the amount of different procedures for

the same effect, and would like to know if this is one of the widely

used methods.

>

> Afterwards should we expect days of screaming from the pain? We are

also concerned that she might rub or fall and pull all the stitches

etc. We've read your posts regarding this and understand that little

ones very quickly find out it is too sore to touch and this deters

them from rubbing their eyes, but has anyone experienced the worst and

had to go back to surgery?

>

> We are (as you can tell) anxious about her first surgery. Your

replies are much appreciated. thanks.

>

> and Rob

[Guest guest]

Thanks for that info Rob. We are comfortable with her Surgeon, but I think unsure about which technique is best for less scarring etc for her long term. I know that different surgeons use the method that works for them. But can't help wondering if a different surgeon with a different technique would benefit her more. Unfortunately here in little Auckland NZ we don't have a wide choice or even the ability to go from surgeon to surgeon getting consults. Being a public system and having to wait lists, if we choose not to go ahead next thurs, we might have to wait months for another appointment.

Thanks for the 'toilet paper' tip! :-)

Rob and

Re: blepharophimosis Update on Alyssa

> We had a consultation with Alyssa's surgeon today and he has> scheduled surgery to do her epicanthal folds next week (the 24th> June) He is going to use the "Roveda procedure". We would love to> hear from anyone with info about, or has had this particular> procedure done? We are concerned about the amount of different> procedures for the same effect, and would like to know if this is one> of the widely used methods.Sorry, I've never heard of it before. It was first described in the following article: Roveda JM: "Epicanthus et Blepharophimosis, notre technique du correction." Ann d'Ocul 1967;200;551-555Which, even if one could find it, wouldn't help much unless one knows (medical!) French!?I have two articles that refer to it briefly, in a rundown of the history of BPEI repair methods, as follows: "Roveda combined a crescentic incision with a Y-to-V technique, but scarring and secondary folds remained a problem."( & Nowinski: "The Five-Fold Technique for Blepharophimosis." Arch Ophthalmol, Vol 107, March 1989) and (Nowinski: "Epicanthal Folds and Blepharophimosis: A New Technique." Trans Pa Acad Ophthalmol Otolaryngol. 1988;40:706-12)Excellent articles. Well worth tracking down (or making your surgeon track down). Bear in mind that Nowinski is pushing his own method there, so it's not surprising if he bags everyone else's (or am I being a cynic again?) somewhat.None of my other articles (not extensive or exhaustive I must admit), post-1967, mention Roveda.> Afterwards should we expect days of screaming from the pain?I'd expect some wimpering, perhaps, from discomfort and/or dull pain, but not screaming. Some itching, prob'ly, as the skin heals. Getting the stitches out later on, of course, will be ... challenging.> We are> also concerned that she might rub or fall and pull all the stitches> etc. We've read your posts regarding this and understand that little> ones very quickly find out it is too sore to touch and this deters> them from rubbing their eyes, but has anyone experienced the worst> and had to go back to surgery?My mother tells me she used to tape toilet rolls (or the tubes in the centres at least) to the inside of my elbows so I could move and bend my arms, but not enough to touch my stitches. Diabolical, but worth a try?> We are (as you can tell) anxious about her first surgery. Your> replies are much appreciated. thanks.Pre-surgery, I always try to fore-arm with as much information as possible about what will be done, and try to be as comfortable as possible in my own mind about what to expect, and that it's the best way to proceed. Has my surgeon done this procedure before? (If not, wrong surgeon.) Shown me before/after pictures? Explained the relative merits of the alternatives and why he/she chose this one? I ask for copies of his/her sources of information, perhaps, too.I don't know the rationale behind the urgency (24 June seems pretty soon) in your case. If possible, I always take the time to do the research, and be comfortable before committing.I found the anxiety can't be avoided, but understanding what's happening was some comfort. God bless.> and Rob(Janet and) Rob

[Guest guest]

-Hi & Bob

will be thinking of you & Alyssa on the 24th June. I`m sure it will

all go ok but can understand your anxiety. Will get in touch

soon.......maybe a visit sometime?

Maree-- In blepharophimosis , " bobjnr " <bobjnr@s...>

wrote:

> Hi everyone and to all the new members. For some reason we were

locked out of , and only just got back again so have missed

messages for the last few weeks.

> For those who aren't familiar, Alyssa is our 19 month old with BPES

and Duanes Syndromes. The first in our family to have BPES.

>

> We had a consultation with Alyssa's surgeon today and he has

scheduled surgery to do her epicanthal folds next week (the 24th

June) He is going to use the " Roveda procedure " . We would love to

hear from anyone with info about, or has had this particular

procedure done? We are concerned about the amount of different

procedures for the same effect, and would like to know if this is one

of the widely used methods.

>

> Afterwards should we expect days of screaming from the pain? We are

also concerned that she might rub or fall and pull all the stitches

etc. We've read your posts regarding this and understand that little

ones very quickly find out it is too sore to touch and this deters

them from rubbing their eyes, but has anyone experienced the worst

and had to go back to surgery?

>

> We are (as you can tell) anxious about her first surgery. Your

replies are much appreciated. thanks.

>

> and Rob