Re: Sling surgeries to be repeated every few years??

[Guest guest]

Dawn,

I can tell you just from what we have found that it can be difficult to find a

surgeon that you feel comfortable with and that can actually do the surgery. We

travel 5 hours away to the Bascom Palmer Eye Institute in Miami, FL (and our

surgeon said they only see a couple cases a year there) for our son (5

weeks). We'll be making our second trip there on January 12th. My husband, who

is 30 now, was also born with this. He had a few more surgeries because he

rejected the original slings that were put in so now he has donated muscles and

some kind of wires instead of any slings. His father has the same condition and

has muscles taken from somewhere on his body. When we talked to our oculoplastic

surgeon about this she said that at this point with she wants to put in

the silicone slings because they slip in very easily and out easily (like a wet

noodle is what she said) if there is a problem. And plus, with him being so

young, it will create alot less scar tissue for him if and when he needs

surgeries in the future. We may be able to use an implanted muscle somewhere

down the road. But, we will probably have to replace the sling in a few years to

get a better result because of his growth.

When we were first diagnosed we were given the choice of a few different eye

institutes. One was Miami, another was in Pittsburgh, one in Texas, another in

Cincinatti. Some of the doctors here we were referred to can't help because his

case is considered too severe. Even one of the pediatric ophthalmologist here

that we were referred to wouldn't see us for awhile so I decided not to even see

him - he said that our son's condition didn't warrent being seen earlier, but I

say that my little boy opens his eyes 5 minutes a day if even that and he hasn't

even bothered to see him to know how severe his condition is. We loved the

surgeon in Miami and are sticking with her. The thing about all this too is that

you have to be comfortable with who you pick because this is your child's face

and you are going to be having a relationship with that doctor -- it's not like

you are just picking out a pair of shoes or something.

As far as deciding not to have anymore surgeries, my husband has not had one

since he was 12 (and he had 9 total). His one eye droops a bit when he gets

tired so he knows he will have to have it lifted sometime, but he's not quite

ready to do that yet. His eyes get very heavy and narrow when he's tired because

it actually takes work for him to keep them open. But, it doesn't seem from what

we've found out that there are all that many innovations since my husband was

little.

Good luck to you and congratulations on your little girl! I hope this helps a

little!

Heidi

>

> Hello all,

>

> We've see a couple of specialists for my daughter who has BPES by now. It's

puzzling to me because what the doctors have told me seems different from what I

got from reading people's posts here. The doctor indicated that the sling

surgery needs to be repeated every few years because whatever materials you use,

after some years, it will lose its elasticity and the surgery will need to be

repeated. When I expressed my doubt, he said " of course there will be

innovations in her lifetime " . So we are dependent on some unknown innovations? I

don't understand.

>

> But it seems some people have said " I'm finally done with the surgeries " or

" I've left all the surgeries behind " . It seems there IS an end point on have

surgeries. Is there anyone, probably an adult by now, who can explain a bit?

>

> My daughter is just 13 weeks old. who's the first one in our family with this

condition. I've sort of overcome the initial shock (which took quite some time)

and are actively working on finding a good doctor now (there are only a few in

the city I live - Charlotte, NC). So any info/personal story/experience will be

very helpful.

>

> Thank you so much and Happy New Year to all.

>

> Dawn

> Charlotte, NC, USA

>

[Guest guest]

Hello Heidi,

Where was the facility/doctor in Texas, please? y little grandson

blepharophimosis Re: Sling surgeries to be repeated every few years??

Dawn,

I can tell you just from what we have found that it can be difficult to find a surgeon that you feel comfortable with and that can actually do the surgery. We travel 5 hours away to the Bascom Palmer Eye Institute in Miami, FL (and our surgeon said they only see a couple cases a year there) for our son (5 weeks). We'll be making our second trip there on January 12th. My husband, who is 30 now, was also born with this. He had a few more surgeries because he rejected the original slings that were put in so now he has donated muscles and some kind of wires instead of any slings. His father has the same condition and has muscles taken from somewhere on his body. When we talked to our oculoplastic surgeon about this she said that at this point with she wants to put in the silicone slings because they slip in very easily and out easily (like a wet noodle is what she said) if there is a problem. And plus, with him being so young, it will create alot less scar tissue for him if and when he needs surgeries in the future. We may be able to use an implanted muscle somewhere down the road. But, we will probably have to replace the sling in a few years to get a better result because of his growth.

When we were first diagnosed we were given the choice of a few different eye institutes. One was Miami, another was in Pittsburgh, one in Texas, another in Cincinatti. Some of the doctors here we were referred to can't help because his case is considered too severe. Even one of the pediatric ophthalmologist here that we were referred to wouldn't see us for awhile so I decided not to even see him - he said that our son's condition didn't warrent being seen earlier, but I say that my little boy opens his eyes 5 minutes a day if even that and he hasn't even bothered to see him to know how severe his condition is. We loved the surgeon in Miami and are sticking with her. The thing about all this too is that you have to be comfortable with who you pick because this is your child's face and you are going to be having a relationship with that doctor -- it's not like you are just picking out a pair of shoes or something.

As far as deciding not to have anymore surgeries, my husband has not had one since he was 12 (and he had 9 total). His one eye droops a bit when he gets tired so he knows he will have to have it lifted sometime, but he's not quite ready to do that yet. His eyes get very heavy and narrow when he's tired because it actually takes work for him to keep them open. But, it doesn't seem from what we've found out that there are all that many innovations since my husband was little.

Good luck to you and congratulations on your little girl! I hope this helps a little!

Heidi

>

> Hello all,

>

> We've see a couple of specialists for my daughter who has BPES by now. It's puzzling to me because what the doctors have told me seems different from what I got from reading people's posts here. The doctor indicated that the sling surgery needs to be repeated every few years because whatever materials you use, after some years, it will lose its elasticity and the surgery will need to be repeated. When I expressed my doubt, he said "of course there will be innovations in her lifetime". So we are dependent on some unknown innovations? I don't understand.

>

> But it seems some people have said "I'm finally done with the surgeries" or "I've left all the surgeries behind". It seems there IS an end point on have surgeries. Is there anyone, probably an adult by now, who can explain a bit?

>

> My daughter is just 13 weeks old. who's the first one in our family with this condition. I've sort of overcome the initial shock (which took quite some time) and are actively working on finding a good doctor now (there are only a few in the city I live - Charlotte, NC). So any info/personal story/experience will be very helpful.

>

> Thank you so much and Happy New Year to all.

>

> Dawn

> Charlotte, NC, USA

>

[Guest guest]

Sorry, the email closed too soon.... Heidi, where was the facility/doctor in Texas, please? My grandson has BPES and needs to be seen by a doctor w/experience in BPES . My kids and the baby are near Houston. Thanks, Janel Young

blepharophimosis Re: Sling surgeries to be repeated every few years??

Dawn,

I can tell you just from what we have found that it can be difficult to find a surgeon that you feel comfortable with and that can actually do the surgery. We travel 5 hours away to the Bascom Palmer Eye Institute in Miami, FL (and our surgeon said they only see a couple cases a year there) for our son (5 weeks). We'll be making our second trip there on January 12th. My husband, who is 30 now, was also born with this. He had a few more surgeries because he rejected the original slings that were put in so now he has donated muscles and some kind of wires instead of any slings. His father has the same condition and has muscles taken from somewhere on his body. When we talked to our oculoplastic surgeon about this she said that at this point with she wants to put in the silicone slings because they slip in very easily and out easily (like a wet noodle is what she said) if there is a problem. And plus, with him being so young, it will create alot less scar tissue for him if and when he needs surgeries in the future. We may be able to use an implanted muscle somewhere down the road. But, we will probably have to replace the sling in a few years to get a better result because of his growth.

When we were first diagnosed we were given the choice of a few different eye institutes. One was Miami, another was in Pittsburgh, one in Texas, another in Cincinatti. Some of the doctors here we were referred to can't help because his case is considered too severe. Even one of the pediatric ophthalmologist here that we were referred to wouldn't see us for awhile so I decided not to even see him - he said that our son's condition didn't warrent being seen earlier, but I say that my little boy opens his eyes 5 minutes a day if even that and he hasn't even bothered to see him to know how severe his condition is. We loved the surgeon in Miami and are sticking with her. The thing about all this too is that you have to be comfortable with who you pick because this is your child's face and you are going to be having a relationship with that doctor -- it's not like you are just picking out a pair of shoes or something.

As far as deciding not to have anymore surgeries, my husband has not had one since he was 12 (and he had 9 total). His one eye droops a bit when he gets tired so he knows he will have to have it lifted sometime, but he's not quite ready to do that yet. His eyes get very heavy and narrow when he's tired because it actually takes work for him to keep them open. But, it doesn't seem from what we've found out that there are all that many innovations since my husband was little.

Good luck to you and congratulations on your little girl! I hope this helps a little!

Heidi

>

> Hello all,

>

> We've see a couple of specialists for my daughter who has BPES by now. It's puzzling to me because what the doctors have told me seems different from what I got from reading people's posts here. The doctor indicated that the sling surgery needs to be repeated every few years because whatever materials you use, after some years, it will lose its elasticity and the surgery will need to be repeated. When I expressed my doubt, he said "of course there will be innovations in her lifetime". So we are dependent on some unknown innovations? I don't understand.

>

> But it seems some people have said "I'm finally done with the surgeries" or "I've left all the surgeries behind". It seems there IS an end point on have surgeries. Is there anyone, probably an adult by now, who can explain a bit?

>

> My daughter is just 13 weeks old. who's the first one in our family with this condition. I've sort of overcome the initial shock (which took quite some time) and are actively working on finding a good doctor now (there are only a few in the city I live - Charlotte, NC). So any info/personal story/experience will be very helpful.

>

> Thank you so much and Happy New Year to all.

>

> Dawn

> Charlotte, NC, USA

>

[Guest guest]

Hi there, to all the new members in the group....My son Lynden is 12 yrs old (omg where did the time go) and he was the first in our family to have BPES... a very severe case at that... he was 5 weeks old when he had his first surgery, he has had 7 or 8... we lost count. I am a Nurse so am a bit more comfortable in the medical aspect of BPES however am still a parent first and ALL/ANY surgeries are scary!!As for if the slings last when they do the brow lift its all dependent on what your doctor uses and how your child reacts. Almost everyone here on this group has a completely different experience in how their surgeries went and to the amount of surgeries... some have had none and never will, some one or 2 is enough or some need 7 plus like my son..My sons first surgery at 5 weeks he had a brow lift because his pupils were completely obstructed and thats the main reason for the various ages and times for surgery.... if you are able to see with no difficulty they like to wait.. then he had the epicanthus (inner corners) done and was good for a while but as he grew we realized we could achieve wider openings so we repeated the 2 surgeries again, sadly he was playing ball and got hit in the face so one of his slings broke.... again another surgery...Also it really extremely varies on what surgery is done and what products are used from country to country.. we live in CANADA and our doctor has one technique and is quite successful... however there is only 2 real specialists in canada (for now ) but people travel from all over canada and the USA..... see these 2 surgeons... our surgeon trained with Mr Collin and from the last meeting we have he had has sent some more great canadian doctors to learn more BPES techniques etc over yonder...... as our Doctor and BPES specialist is gearing up for retirement... our biggest fear....Our last doctors appointment we asked his surgeon if he will ever have to go thru any more surgeries because he does have the silicone slings.. his answer was "in theory" no but you never know what the future brings... On 2010-01-02, at 7:52 PM, li.dawn wrote:

Hello all,

We've see a couple of specialists for my daughter who has BPES by now. It's puzzling to me because what the doctors have told me seems different from what I got from reading people's posts here. The doctor indicated that the sling surgery needs to be repeated every few years because whatever materials you use, after some years, it will lose its elasticity and the surgery will need to be repeated. When I expressed my doubt, he said "of course there will be innovations in her lifetime". So we are dependent on some unknown innovations? I don't understand.

But it seems some people have said "I'm finally done with the surgeries" or "I've left all the surgeries behind". It seems there IS an end point on have surgeries. Is there anyone, probably an adult by now, who can explain a bit?

My daughter is just 13 weeks old. who's the first one in our family with this condition. I've sort of overcome the initial shock (which took quite some time) and are actively working on finding a good doctor now (there are only a few in the city I live - Charlotte, NC). So any info/personal story/experience will be very helpful.

Thank you so much and Happy New Year to all.

Dawn

Charlotte, NC, USA

& TonikkaAre you or anyone else looking for a photographer? for your family? pregnancy? Baby? Children? Wedding?check out our websitestmareephotography.blogspot.comtmareephotography.com

[Guest guest]

I'm honestly not sure where it is because we never considered going to Texas so we didn't ask the name, but I do know that Cullen Eye Institute in Houston is highly rated. I would probably use that as a starting point and if they can't help they can probably refer you to who to go to.

Heidi

From: "jyoung3045@..." <jyoung3045@...>blepharophimosis Sent: Sun, January 3, 2010 5:10:23 PMSubject: Re: blepharophimosis Re: Sling surgeries to be repeated every few years??

Sorry, the email closed too soon.... Heidi, where was the facility/doctor in Texas, please? My grandson has BPES and needs to be seen by a doctor w/experience in BPES . My kids and the baby are near Houston. Thanks, Janel Young

blepharophimosis Re: Sling surgeries to be repeated every few years??

Dawn,I can tell you just from what we have found that it can be difficult to find a surgeon that you feel comfortable with and that can actually do the surgery. We travel 5 hours away to the Bascom Palmer Eye Institute in Miami, FL (and our surgeon said they only see a couple cases a year there) for our son (5 weeks). We'll be making our second trip there on January 12th. My husband, who is 30 now, was also born with this. He had a few more surgeries because he rejected the original slings that were put in so now he has donated muscles and some kind of wires instead of any slings. His father has the same condition and has muscles taken from somewhere on his body. When we talked to our oculoplastic surgeon about this she said that at this point with she wants to put in the silicone slings because they slip in very easily and out easily (like a wet noodle is what she said) if there is a problem. And plus, with him being so young,

it will create alot less scar tissue for him if and when he needs surgeries in the future. We may be able to use an implanted muscle somewhere down the road. But, we will probably have to replace the sling in a few years to get a better result because of his growth. When we were first diagnosed we were given the choice of a few different eye institutes. One was Miami, another was in Pittsburgh, one in Texas, another in Cincinatti. Some of the doctors here we were referred to can't help because his case is considered too severe. Even one of the pediatric ophthalmologist here that we were referred to wouldn't see us for awhile so I decided not to even see him - he said that our son's condition didn't warrent being seen earlier, but I say that my little boy opens his eyes 5 minutes a day if even that and he hasn't even bothered to see him to know how severe his condition is. We loved the surgeon in Miami and are sticking with her. The thing about

all this too is that you have to be comfortable with who you pick because this is your child's face and you are going to be having a relationship with that doctor -- it's not like you are just picking out a pair of shoes or something. As far as deciding not to have anymore surgeries, my husband has not had one since he was 12 (and he had 9 total). His one eye droops a bit when he gets tired so he knows he will have to have it lifted sometime, but he's not quite ready to do that yet. His eyes get very heavy and narrow when he's tired because it actually takes work for him to keep them open. But, it doesn't seem from what we've found out that there are all that many innovations since my husband was little.Good luck to you and congratulations on your little girl! I hope this helps a little!Heidi >> Hello all,> > We've see a couple of specialists for my daughter who has BPES by now. It's puzzling to me because what the doctors have told me seems different from what I got from reading people's posts here. The doctor indicated that the sling surgery needs to be repeated every few years because whatever materials you use, after some years, it will lose its elasticity and the surgery will need to be repeated. When I expressed my doubt, he said "of course there will be innovations in her lifetime". So we are dependent on some unknown innovations? I don't understand. > > But it seems some people have said "I'm finally done with the surgeries" or "I've left all the surgeries behind". It seems there IS an end point on have surgeries. Is there anyone, probably an adult by now, who can

explain a bit? > > My daughter is just 13 weeks old. who's the first one in our family with this condition. I've sort of overcome the initial shock (which took quite some time) and are actively working on finding a good doctor now (there are only a few in the city I live - Charlotte, NC). So any info/personal story/experience will be very helpful.> > Thank you so much and Happy New Year to all.> > Dawn> Charlotte, NC, USA>

[Guest guest]

Thank you so much. Wish us luck w/ our beautiful baby boy. Hoping his parents will get aquainted w/ the website...Janel

blepharophimosis Re: Sling surgeries to be repeated every few years??

Dawn,

I can tell you just from what we have found that it can be difficult to find a surgeon that you feel comfortable with and that can actually do the surgery. We travel 5 hours away to the Bascom Palmer Eye Institute in Miami, FL (and our surgeon said they only see a couple cases a year there) for our son (5 weeks). We'll be making our second trip there on January 12th. My husband, who is 30 now, was also born with this. He had a few more surgeries because he rejected the original slings that were put in so now he has donated muscles and some kind of wires instead of any slings. His father has the same condition and has muscles taken from somewhere on his body. When we talked to our oculoplastic surgeon about this she said that at this point with she wants to put in the silicone slings because they slip in very easily and out easily (like a wet noodle is what she said) if there is a problem. And plus, with him being so young, it will create alot less scar tissue for him if and when he needs surgeries in the future. We may be able to use an implanted muscle somewhere down the road. But, we will probably have to replace the sling in a few years to get a better result because of his growth.

When we were first diagnosed we were given the choice of a few different eye institutes. One was Miami, another was in Pittsburgh, one in Texas, another in Cincinatti. Some of the doctors here we were referred to can't help because his case is considered too severe. Even one of the pediatric ophthalmologist here that we were referred to wouldn't see us for awhile so I decided not to even see him - he said that our son's condition didn't warrent being seen earlier, but I say that my little boy opens his eyes 5 minutes a day if even that and he hasn't even bothered to see him to know how severe his condition is. We loved the surgeon in Miami and are sticking with her. The thing about all this too is that you have to be comfortable with who you pick because this is your child's face and you are going to be having a relationship with that doctor -- it's not like you are just picking out a pair of shoes or something.

As far as deciding not to have anymore surgeries, my husband has not had one since he was 12 (and he had 9 total). His one eye droops a bit when he gets tired so he knows he will have to have it lifted sometime, but he's not quite ready to do that yet. His eyes get very heavy and narrow when he's tired because it actually takes work for him to keep them open. But, it doesn't seem from what we've found out that there are all that many innovations since my husband was little.

Good luck to you and congratulations on your little girl! I hope this helps a little!

Heidi

>

> Hello all,

>

> We've see a couple of specialists for my daughter who has BPES by now. It's puzzling to me because what the doctors have told me seems different from what I got from reading people's posts here. The doctor indicated that the sling surgery needs to be repeated every few years because whatever materials you use, after some years, it will lose its elasticity and the surgery will need to be repeated. When I expressed my doubt, he said "of course there will be innovations in her lifetime". So we are dependent on some unknown innovations? I don't understand.

>

> But it seems some people have said "I'm finally done with the surgeries" or "I've left all the surgeries behind". It seems there IS an end point on have surgeries. Is there anyone, probably an adult by now, who can explain a bit?

>

> My daughter is just 13 weeks old. who's the first one in our family with this condition. I've sort of overcome the initial shock (which took quite some time) and are actively working on finding a good doctor now (there are only a few in the city I live - Charlotte, NC). So any info/personal story/experience will be very helpful.

>

> Thank you so much and Happy New Year to all.

>

> Dawn

> Charlotte, NC, USA

>

[Guest guest]

Hello Dawn,

We are in Australia and my daughter who is 4yrs old has just had the sling surgery done. Muscle was used from her thigh and we were told that this will last her most, if not all her life. I think if silicon material is used that it may have a shorter lifespan although that is only my understanding.

Good luck.

Machaela x

From: li.dawn <li.dawn@...>Subject: blepharophimosis Sling surgeries to be repeated every few years??blepharophimosis Received: Sunday, 3 January, 2010, 1:52 PM

Hello all,We've see a couple of specialists for my daughter who has BPES by now. It's puzzling to me because what the doctors have told me seems different from what I got from reading people's posts here. The doctor indicated that the sling surgery needs to be repeated every few years because whatever materials you use, after some years, it will lose its elasticity and the surgery will need to be repeated. When I expressed my doubt, he said "of course there will be innovations in her lifetime". So we are dependent on some unknown innovations? I don't understand. But it seems some people have said "I'm finally done with the surgeries" or "I've left all the surgeries behind". It seems there IS an end point on have surgeries. Is there anyone, probably an adult by now, who can explain a bit? My daughter is just 13 weeks old. who's the first one in our family with this condition. I've sort of overcome the initial shock (which took

quite some time) and are actively working on finding a good doctor now (there are only a few in the city I live - Charlotte, NC). So any info/personal story/experience will be very helpful.Thank you so much and Happy New Year to all.DawnCharlotte, NC, USA

See what's on at the movies in your area. Find out now.

[Guest guest]

Thank you all for responding to my questions! It's really amazing how much

support I can find here on this board.

From what I've learned from all of you, it seems there are at least the

following steps. 1) make sure the baby's eyes are developing normally, or the

eyelids don't block pupil 2) find the good surgeon(s) 3) make sure the material

used is good for your case. A lot of luck is also needed in this entire process.

We are in the middle of step 2 right now.

Again, thanks to all.

-Dawn

>

> Hello all,

>

> We've see a couple of specialists for my daughter who has BPES by now. It's

puzzling to me because what the doctors have told me seems different from what I

got from reading people's posts here. The doctor indicated that the sling

surgery needs to be repeated every few years because whatever materials you use,

after some years, it will lose its elasticity and the surgery will need to be

repeated. When I expressed my doubt, he said " of course there will be

innovations in her lifetime " . So we are dependent on some unknown innovations? I

don't understand.

>

> But it seems some people have said " I'm finally done with the surgeries " or

" I've left all the surgeries behind " . It seems there IS an end point on have

surgeries. Is there anyone, probably an adult by now, who can explain a bit?

>

> My daughter is just 13 weeks old. who's the first one in our family with this

condition. I've sort of overcome the initial shock (which took quite some time)

and are actively working on finding a good doctor now (there are only a few in

the city I live - Charlotte, NC). So any info/personal story/experience will be

very helpful.

>

> Thank you so much and Happy New Year to all.

>

> Dawn

> Charlotte, NC, USA

>