Re: more information please...

[Guest guest]

...leanne again, our dr also told us that he would do the epicanthal folds first, then the ptosis surgery, starting just before he turns 4 years old! He did mention about the scarring being noticeable on the epicanthal folds surgery, he said theres no way of not having noticable scarring in that area.

-- blepharophimosis more information please...

Sorry to go back to an older message (below), but Rob I was wondering if you could please explain this number 3 in more detail?Alyssa's surgeons are now looking at correcting the Epicanthal folds first. He keeps changing his mind as to what to do which to us is a bit of a worry. He talks of making a 'cut' to open the eye and that there will be quite abit of scarring in the way of a knot which will need regular massage to help disolve the scar somewhat. At times I wonder if he really knows what he's doing. We aren't able to 'shop' around and get 2nd opinions as most of you overseas. His explanation almost seems primitive to us. He hasn't mentioned anything about transnasal wiring. Doesn't this have to be done as part of the surgery? Or can one have the epicanthal surgery without moving the tear ducts? Please can someone explain all of this in more detail to us? We are very concerned that the surgeon isn't doing the 'right' type of surgery. We are confused and concerned as to what to do now. Thanks heaps, operation. Can anyone also tell me please....is>>there different techniques to correct the Epicanthus Folds?There have apparently been many techniques cited over the years. Amongrecent work, & Nowinski (Arch Ophthalmol 1989;107;448-452) listthe three best as: (1) Mustarde's five-flap "jumping man", (2) 'smodification of the Blair technique (whetever that is! sorry, no info),and (3) Double Z-plasties with Y-to-V flap. Their preference is for #3,and these days it seems to be the most common.

[Guest guest]

Leanne.... erik's scars are very hard to see unless

you know they're there. He had it done last May. If

you'd like I'll see if I can get him to sit still long

enough to get a picture of them!

a

--- leelee <tltne@...> wrote:

> ...leanne again, our dr also told us that he

> would do the epicanthal

> folds first, then the ptosis surgery, starting just

> before he turns 4 years

> old! He did mention about the scarring being

> noticeable on the epicanthal

> folds surgery, he said theres no way of not having

> noticable scarring in

> that area.

>

> -- blepharophimosis more information

> please...

>

> Sorry to go back to an older message (below), but

> Rob I was wondering

> if you could please explain this number 3 in more

> detail?

> Alyssa's surgeons are now looking at correcting the

> Epicanthal folds

> first. He keeps changing his mind as to what to do

> which to us is a

> bit of a worry. He talks of making a 'cut' to open

> the eye and that

> there will be quite abit of scarring in the way of a

> knot which will

> need regular massage to help disolve the scar

> somewhat. At times I

> wonder if he really knows what he's doing. We

> aren't able to 'shop'

> around and get 2nd opinions as most of you overseas.

> His explanation

> almost seems primitive to us. He hasn't mentioned

> anything about

> transnasal wiring. Doesn't this have to be done as

> part of the

> surgery? Or can one have the epicanthal surgery

> without moving the

> tear ducts? Please can someone explain all of this

> in more detail to

> us? We are very concerned that the surgeon isn't

> doing the 'right'

> type of surgery. We are confused and concerned as to

> what to do now.

> Thanks heaps,

>

> operation. Can anyone also tell me please....is

> >>there different techniques to correct the

> Epicanthus Folds?

>

> There have apparently been many techniques cited

> over the years. Among

> recent work, & Nowinski (Arch Ophthalmol

> 1989;107;448-452)

> list

> the three best as: (1) Mustarde's five-flap " jumping

> man " , (2)

> 's

> modification of the Blair technique (whetever that

> is! sorry, no

> info),

> and (3) Double Z-plasties with Y-to-V flap. Their

> preference is for

> #3,

> and these days it seems to be the most common.

>

>

>

>

[Guest guest]

andreabobjnr wrote:

> Sorry to go back to an older message (below), but Rob I was wondering

> if you could please explain this number 3 in more detail?

Tricky without being able to draw a picture. The article that describes

it takes about two pages of heavy medical gobbledegook. I'll try:

Imagine a 'Z' tilted 45 degrees to the left. Then another Z, mirror

image of the first, below, touching it. Then a line to the left from

where they touch. With the nose to the left and the canthus to the

right, between the 'bottom' line of the first Z and the 'top' line of

the 2nd. A bit like this:

_

(nose) __|/ (canthus)

_|\

(use a non-proportional font like Courier or Lucida to see it, and

pretend that the vertical lines are sloping, and that the sloping lines

are even more sloping)

> Alyssa's surgeons are now looking at correcting the Epicanthal folds

> first. He keeps changing his mind as to what to do which to us is a

> bit of a worry. He talks of making a 'cut' to open the eye and that

> there will be quite abit of scarring in the way of a knot which will

> need regular massage to help disolve the scar somewhat.

Z-plasty scarring is possible. My most visible scar is from my Z-plasty.

Ironically, Z-plasties are usually used to repair other scars or make

them less visible. The 'knot' might be the point where 5 of the

incisions meet?

There appears to have always been some differences of approach as to

whether the ptosis is repaired first or the

epicanthus-inversus/telecanthus. It depends somewhat on the severity of

the ptosis (is it interfering with vision, for example). Some do a

temporary ptosis repair first, then fix the other, then do another

'proper' ptosis job later. If possible, most seem to prefer to do the

canthi first, then the ptosis later, as they'll then have more (and

relatively 'final') eyelid to play with.

> At times I

> wonder if he really knows what he's doing. We aren't able to 'shop'

> around and get 2nd opinions as most of you overseas.

Even here, " over(-The Tasman-)seas " , there aren't a lot of good doctors

to choose from. It seems a universal problem, even in relatively more

populated areas like the Europe and the US.

> His explanation

> almost seems primitive to us. He hasn't mentioned anything about

> transnasal wiring. Doesn't this have to be done as part of the

> surgery?

I never had any wiring. As far as I can tell, that only seems to be

necessary if the canthi need to be 'pulled' closer to the nose if they

can't be surgically extended any closer or if the lower lid is sagging.

Not done much these days, perhaps? Please don't feel as though you're

missing out on anything!

> Or can one have the epicanthal surgery without moving the

> tear ducts?

I'd expect them to wait and see how effectively placed the tear ducts

are after surgery before making any decision about moving them. I didn't

have my tear duct moved until about 6 years after my main surgeries.

(then again 3 years later, then again 8 years after that). Again, avoid

if possible.

> Please can someone explain all of this in more detail to

> us? We are very concerned that the surgeon isn't doing the 'right'

> type of surgery. We are confused and concerned as to what to do now.

What is 'right' depends on each individual case. Even then, there's

probably no single right answer. Keep researching and barraging your

surgeon with questions until you feel comfortable that (a) you

understand what he/she wants to do, and ( what they want to do seems

sensible. By all means seek 2nd opinions from other surgeons. (We flew

interstate to interview other surgeons).

Rob

> Thanks heaps,

>

> operation. Can anyone also tell me please....is

>

>>>there different techniques to correct the Epicanthus Folds?

>

>

> There have apparently been many techniques cited over the years. Among

> recent work, & Nowinski (Arch Ophthalmol 1989;107;448-452)

> list

> the three best as: (1) Mustarde's five-flap " jumping man " , (2)

> 's

> modification of the Blair technique (whetever that is! sorry, no

> info),

> and (3) Double Z-plasties with Y-to-V flap. Their preference is for

> #3,

> and these days it seems to be the most common.

>

[Guest guest]

Hi a....Leanne here, thanks so much, if you can get to hold still that long! I'd love to see, I know how on the go they are:) ....How is he doing anyway?....He is still in pre-school?...or *big boy school* now, as I tell my other son who just started school:)...

-- blepharophimosis more information> please...> > Sorry to go back to an older message (below), but> Rob I was wondering > if you could please explain this number 3 in more> detail?> Alyssa's surgeons are now looking at correcting the> Epicanthal folds > first. He keeps changing his mind as to what to do> which to us is a > bit of a worry. He talks of making a 'cut' to open> the eye and that > there will be quite abit of scarring in the way of a> knot which will > need regular massage to help disolve the scar> somewhat. At times I > wonder if he really knows what he's doing. We> aren't able to 'shop' > around and get 2nd opinions as most of you overseas.> His explanation > almost seems primitive to us. He hasn't mentioned> anything about > transnasal wiring. Doesn't this have to be done as> part of the > surgery? Or can one have the epicanthal surgery> without moving the > tear ducts? Please can someone explain all of this> in more detail to > us? We are very concerned that the surgeon isn't> doing the 'right' > type of surgery. We are confused and concerned as to> what to do now. > Thanks heaps, > > operation. Can anyone also tell me please....is> >>there different techniques to correct the> Epicanthus Folds?> > There have apparently been many techniques cited> over the years. Among> recent work, & Nowinski (Arch Ophthalmol> 1989;107;448-452) > list> the three best as: (1) Mustarde's five-flap "jumping> man", (2) > 's> modification of the Blair technique (whetever that> is! sorry, no > info),> and (3) Double Z-plasties with Y-to-V flap. Their> preference is for > #3,> and these days it seems to be the most common.> > > >

[Guest guest]

Hi Leanne. Yeah he's in Kindergarten now. He's not

too keen on living with so many rules from a teacher

but I think school is exactly what he needs. He's too

easily bored....which leads to him being a brat! )

I'll try to get his picture as soon as possible! Do

you want me to post it on the picture board or just

email it to you?

a

--- leelee <tltne@...> wrote:

> Hi a....Leanne here, thanks so much, if you can

> get to hold still

> that long! I'd love to see, I know how on the go

> they are:) ....How is he

> doing anyway?....He is still in pre-school?...or

> *big boy school* now, as I

> tell my other son who just started school:)...

>

> -- blepharophimosis more information

> > please...

> >

> > Sorry to go back to an older message (below), but

> > Rob I was wondering

> > if you could please explain this number 3 in more

> > detail?

> > Alyssa's surgeons are now looking at correcting

> the

> > Epicanthal folds

> > first. He keeps changing his mind as to what to

> do

> > which to us is a

> > bit of a worry. He talks of making a 'cut' to

> open

> > the eye and that

> > there will be quite abit of scarring in the way of

> a

> > knot which will

> > need regular massage to help disolve the scar

> > somewhat. At times I

> > wonder if he really knows what he's doing. We

> > aren't able to 'shop'

> > around and get 2nd opinions as most of you

> overseas.

> > His explanation

> > almost seems primitive to us. He hasn't mentioned

> > anything about

> > transnasal wiring. Doesn't this have to be done

> as

> > part of the

> > surgery? Or can one have the epicanthal surgery

> > without moving the

> > tear ducts? Please can someone explain all of

> this

> > in more detail to

> > us? We are very concerned that the surgeon isn't

> > doing the 'right'

> > type of surgery. We are confused and concerned as

> to

> > what to do now.

> > Thanks heaps,

> >

> > operation. Can anyone also tell me please....is

> > >>there different techniques to correct the

> > Epicanthus Folds?

> >

> > There have apparently been many techniques cited

> > over the years. Among

> > recent work, & Nowinski (Arch Ophthalmol

> > 1989;107;448-452)

> > list

> > the three best as: (1) Mustarde's five-flap

> " jumping

> > man " , (2)

> > 's

> > modification of the Blair technique (whetever that

> > is! sorry, no

> > info),

> > and (3) Double Z-plasties with Y-to-V flap. Their

> > preference is for

> > #3,

> > and these days it seems to be the most common.

> >

> >

> >

> >

[Guest guest]

Hi a....Yes I know what you mean, my son tyler just started school 1 week ago, he loves it though, so thats a bonus....he is very BUSY!....always moving, always talking:)...or should I say yelling, boy's are so loud!....I wonder if Ethan will copy him, probably!...No, it's all good....not so bad having 3 guys around ....With the pix, whatever's easier for you, I am sure the other members would love to see the pic also, so probably to the bleph site, just let me know when you have posted it...gotta run, it's a long weekend, going camping....Have a good one...Bye.

-- blepharophimosis more information> > please...> > > > Sorry to go back to an older message (below), but> > Rob I was wondering > > if you could please explain this number 3 in more> > detail?> > Alyssa's surgeons are now looking at correcting> the> > Epicanthal folds > > first. He keeps changing his mind as to what to> do> > which to us is a > > bit of a worry. He talks of making a 'cut' to> open> > the eye and that > > there will be quite abit of scarring in the way of> a> > knot which will > > need regular massage to help disolve the scar> > somewhat. At times I > > wonder if he really knows what he's doing. We> > aren't able to 'shop' > > around and get 2nd opinions as most of you> overseas.> > His explanation > > almost seems primitive to us. He hasn't mentioned> > anything about > > transnasal wiring. Doesn't this have to be done> as> > part of the > > surgery? Or can one have the epicanthal surgery> > without moving the > > tear ducts? Please can someone explain all of> this> > in more detail to > > us? We are very concerned that the surgeon isn't> > doing the 'right' > > type of surgery. We are confused and concerned as> to> > what to do now. > > Thanks heaps, > > > > operation. Can anyone also tell me please....is> > >>there different techniques to correct the> > Epicanthus Folds?> > > > There have apparently been many techniques cited> > over the years. Among> > recent work, & Nowinski (Arch Ophthalmol> > 1989;107;448-452) > > list> > the three best as: (1) Mustarde's five-flap> "jumping> > man", (2) > > 's> > modification of the Blair technique (whetever that> > is! sorry, no > > info),> > and (3) Double Z-plasties with Y-to-V flap. Their> > preference is for > > #3,> > and these days it seems to be the most common.> > > > > > > >

[Guest guest]

Thanks Rob for all your wonderful explanations and help! I don't know what we'd do without everyone...I will have to have a more indepth conversation with her surgeon at our next visit in March.

In regards to % I have so far heard of 2 generations of families with BPES in NZ and of course us kiwi's who belong to this group. My daughter wants to be a scientist - maybe I can head her in the direction of BPES research! :-)

Thanks also Shireen for the database info, will have to go there when I have more time.

To those of you that have the artificial folds surgery on your eyelids, I am wanting to know if you also regret having this done like Stacey? Our surgeon mentioned this surgery for Alyssa at our last visit although it is not planned for the near future, but in light of Stacey's email, I think I would like to hear some more 'views' before we even consider this for Alyssa. Thanks heaps,

(Alyssa's mum 14 Months)

Re: blepharophimosis more information please...

andreabobjnr wrote:> Sorry to go back to an older message (below), but Rob I was wondering > if you could please explain this number 3 in more detail?Tricky without being able to draw a picture. The article that describes it takes about two pages of heavy medical gobbledegook. I'll try:Imagine a 'Z' tilted 45 degrees to the left. Then another Z, mirror image of the first, below, touching it. Then a line to the left from where they touch. With the nose to the left and the canthus to the right, between the 'bottom' line of the first Z and the 'top' line of the 2nd. A bit like this: _(nose) __|/ (canthus) _|\(use a non-proportional font like Courier or Lucida to see it, and pretend that the vertical lines are sloping, and that the sloping lines are even more sloping)> Alyssa's surgeons are now looking at correcting the Epicanthal folds > first. He keeps changing his mind as to what to do which to us is a > bit of a worry. He talks of making a 'cut' to open the eye and that > there will be quite abit of scarring in the way of a knot which will > need regular massage to help disolve the scar somewhat.Z-plasty scarring is possible. My most visible scar is from my Z-plasty. Ironically, Z-plasties are usually used to repair other scars or make them less visible. The 'knot' might be the point where 5 of the incisions meet?There appears to have always been some differences of approach as to whether the ptosis is repaired first or the epicanthus-inversus/telecanthus. It depends somewhat on the severity of the ptosis (is it interfering with vision, for example). Some do a temporary ptosis repair first, then fix the other, then do another 'proper' ptosis job later. If possible, most seem to prefer to do the canthi first, then the ptosis later, as they'll then have more (and relatively 'final') eyelid to play with.> At times I > wonder if he really knows what he's doing. We aren't able to 'shop' > around and get 2nd opinions as most of you overseas.Even here, "over(-The Tasman-)seas", there aren't a lot of good doctors to choose from. It seems a universal problem, even in relatively more populated areas like the Europe and the US.> His explanation > almost seems primitive to us. He hasn't mentioned anything about > transnasal wiring. Doesn't this have to be done as part of the > surgery?I never had any wiring. As far as I can tell, that only seems to be necessary if the canthi need to be 'pulled' closer to the nose if they can't be surgically extended any closer or if the lower lid is sagging. Not done much these days, perhaps? Please don't feel as though you're missing out on anything!> Or can one have the epicanthal surgery without moving the > tear ducts?I'd expect them to wait and see how effectively placed the tear ducts are after surgery before making any decision about moving them. I didn't have my tear duct moved until about 6 years after my main surgeries. (then again 3 years later, then again 8 years after that). Again, avoid if possible.> Please can someone explain all of this in more detail to > us? We are very concerned that the surgeon isn't doing the 'right' > type of surgery. We are confused and concerned as to what to do now. What is 'right' depends on each individual case. Even then, there's probably no single right answer. Keep researching and barraging your surgeon with questions until you feel comfortable that (a) you understand what he/she wants to do, and ( what they want to do seems sensible. By all means seek 2nd opinions from other surgeons. (We flew interstate to interview other surgeons).Rob> Thanks heaps, > > operation. Can anyone also tell me please....is> >>>there different techniques to correct the Epicanthus Folds?> > > There have apparently been many techniques cited over the years. Among> recent work, & Nowinski (Arch Ophthalmol 1989;107;448-452) > list> the three best as: (1) Mustarde's five-flap "jumping man", (2) > 's> modification of the Blair technique (whetever that is! sorry, no > info),> and (3) Double Z-plasties with Y-to-V flap. Their preference is for > #3,> and these days it seems to be the most common.>

[Guest guest]

Hi ,

I had the artificial folds surgery in my 20's and I also regret

doing it. I think, on me anyway, it looks more un-natural then had

it been left alone.

>

> > Sorry to go back to an older message (below), but Rob I was

wondering

> > if you could please explain this number 3 in more detail?

>

> Tricky without being able to draw a picture. The article that

describes

> it takes about two pages of heavy medical gobbledegook. I'll try:

> Imagine a 'Z' tilted 45 degrees to the left. Then another Z,

mirror

> image of the first, below, touching it. Then a line to the left

from

> where they touch. With the nose to the left and the canthus to

the

> right, between the 'bottom' line of the first Z and the 'top'

line of

> the 2nd. A bit like this:

> _

> (nose) __|/ (canthus)

> _|\

>

> (use a non-proportional font like Courier or Lucida to see it,

and

> pretend that the vertical lines are sloping, and that the

sloping lines

> are even more sloping)

>

> > Alyssa's surgeons are now looking at correcting the Epicanthal

folds

> > first. He keeps changing his mind as to what to do which to

us is a

> > bit of a worry. He talks of making a 'cut' to open the eye

and that

> > there will be quite abit of scarring in the way of a knot

which will

> > need regular massage to help disolve the scar somewhat.

>

> Z-plasty scarring is possible. My most visible scar is from my Z-

plasty.

> Ironically, Z-plasties are usually used to repair other scars or

make

> them less visible. The 'knot' might be the point where 5 of the

> incisions meet?

>

> There appears to have always been some differences of approach

as to

> whether the ptosis is repaired first or the

> epicanthus-inversus/telecanthus. It depends somewhat on the

severity of

> the ptosis (is it interfering with vision, for example). Some do

a

> temporary ptosis repair first, then fix the other, then do

another

> 'proper' ptosis job later. If possible, most seem to prefer to

do the

> canthi first, then the ptosis later, as they'll then have more

(and

> relatively 'final') eyelid to play with.

>

> > At times I

> > wonder if he really knows what he's doing. We aren't able

to 'shop'

> > around and get 2nd opinions as most of you overseas.

>

> Even here, " over(-The Tasman-)seas " , there aren't a lot of good

doctors

> to choose from. It seems a universal problem, even in relatively

more

> populated areas like the Europe and the US.

>

> > His explanation

> > almost seems primitive to us. He hasn't mentioned anything

about

> > transnasal wiring. Doesn't this have to be done as part of

the

> > surgery?

>

> I never had any wiring. As far as I can tell, that only seems to

be

> necessary if the canthi need to be 'pulled' closer to the nose

if they

> can't be surgically extended any closer or if the lower lid is

sagging.

> Not done much these days, perhaps? Please don't feel as though

you're

> missing out on anything!

>

> > Or can one have the epicanthal surgery without moving the

> > tear ducts?

>

> I'd expect them to wait and see how effectively placed the tear

ducts

> are after surgery before making any decision about moving them.

I didn't

> have my tear duct moved until about 6 years after my main

surgeries.

> (then again 3 years later, then again 8 years after that).

Again, avoid

> if possible.

>

> > Please can someone explain all of this in more detail to

> > us? We are very concerned that the surgeon isn't doing

the 'right'

> > type of surgery. We are confused and concerned as to what to

do now.

>

> What is 'right' depends on each individual case. Even then,

there's

> probably no single right answer. Keep researching and barraging

your

> surgeon with questions until you feel comfortable that (a) you

> understand what he/she wants to do, and ( what they want to do

seems

> sensible. By all means seek 2nd opinions from other surgeons.

(We flew

> interstate to interview other surgeons).

>

> Rob

>

>

> > Thanks heaps,

> >

> > operation. Can anyone also tell me please....is

> >

> >>>there different techniques to correct the Epicanthus Folds?

> >

> >

> > There have apparently been many techniques cited over the

years. Among

> > recent work, & Nowinski (Arch Ophthalmol 1989;107;448-

452)

> > list

> > the three best as: (1) Mustarde's five-flap " jumping man " , (2)

> > 's

> > modification of the Blair technique (whetever that is! sorry,

no

> > info),

> > and (3) Double Z-plasties with Y-to-V flap. Their preference

is for

> > #3,

> > and these days it seems to be the most common.

> >

>

>

>

>

[Guest guest]

,

I

don’t have the artificial folds, but my oldest son does. He’s 10 yrs old now, and the results of

the folds are wonderful. He looks

as if he never had anything wrong with his eyes. We have my youngest sons surgery scheduled for April 2nd,

but the surgeon isn’t sure if he’s going to be able to do the folds on him or

not. He has a severe case of

ptosis and apparently he doesn’t have a lot of skin there like my oldest son

did. I guess I’ll just have to

wait and see come the day of the surgery.

[Guest guest]

Hi do you have a (close-up) picture of you and your family? I

would love to see the wonderful folds of the eldest son and you

without. Thanks, Bernice

> ,

>

> I don't have the artificial folds, but my oldest son

does. He's

> 10 yrs old now, and the results of the folds are wonderful. He

looks as if

> he never had anything wrong with his eyes. We have my youngest

sons surgery

> scheduled for April 2nd, but the surgeon isn't sure if he's going

to be able

> to do the folds on him or not. He has a severe case of ptosis and

> apparently he doesn't have a lot of skin there like my oldest son

did. I

> guess I'll just have to wait and see come the day of the surgery.

>

>