Re: Sling Surgery - Do eyes blink and close properly afterward?

[Guest guest]

> After meeting with a pediatric opth. at Wills Eye, we were referred to

> Dr. Katowitz of CHOP, and he recommended that my son get the sling

> surgery done because his ptosis was severe and would affect his

> vision. He also mentioned that he would not blink or be able to close

> his eyes after this sling surgery was completed.

> For those of you (or parents of affected children) who've had the

> surgery, could you still blink and close your eyes properly? And if

> not, how has that affected you with regards to sensitivity to

> light/wind/sun? Do your eyes stay lubricated and do you have trouble

> sleeping?

With my ptosis sling repair (40-ish years ago), I've always been able to

blink and close my eyes fully (both awake and asleep) as well as wink,

leer, ogle, peer, peep, squint and stare (all necessary/useful skills

for us blokes).

Maybe it's just the way HE (Katowitz) does the operation? If he's sure

that not being able to blink or close one's eyes is always a permanent

result of his surgery, maybe he's doing it wrongly; I'd be looking for a

second or third opinion; i.e. find a surgeon who is GOOD at his/her job.

If he's suggesting those are temporary (just during healing perhaps) or

rare effects, fair enough, but I'd be looking for better long-term

results, otherwise.

> I am so frightened and confused. My husband and I want to make the

> BEST decision for our son. There is no room for error - there's too

> much at stake. We are not convinced that this surgery is the best

> option. But we also don't want to do anything to jeapordize his

> vision, either.

Quite right, and very wise. Therefore, I always shop around and talk to

(i.e. interview without mercy) alternative medicos, even if it involves

interstate travel. Other folks on this forum have taken their business

overseas to get the best help. In my experience, not everyone who calls

themselves an ophthalmic surgeon is necessarily experienced or good at

their job or at a particular surgical procedure, and even those who are

experienced and good will differ from each other in their approaches and

effectiveness or results.

Rob W

Oz

[Guest guest]

Welcome to the group! Our 18 month old son, had surgery with Dr Katowitz at CHOP. He trained several of the Moorfield dr's himself. 's surgery was done at 10 months and 13 months. We met with and chatted with surgeons all over the world and found his experience to be the best for our son. He is definitely very direct in his communication style although we found him to be very skilled and informative throughout the process. I would be happy to chat with you directly about him. When you blink or need to clear something from your eye think about all of the facial muscles you use. Our son blinks using his forehead and facial muscles and definitely is able to clear things from his eyes. After surgery he had to learn how to close his eyes again and they were open more

in the initial days post-surgery. This was also due to the swelling. He does seem to be a little more light sensitive although we've only really noticed it at the pool when it is very sunny and the reflections bother even my eyes. In folllow-up appointments his eyes have been examined for dryness and seem to be doing well. We do continue to use ointment at night when he sleeps. His eyes at night appear to be closed. Sometimes when he falls asleep in his car seat or sitting vertically there is a slight opening. The information is not always easy to navigate but it does get easier. We were in your shoes last year at this time - deciding whether to proceed and if so, which dr. We were at appointments every few weeks. Now, is doing well and at his last follow-up appointment in June they said to wait to come back in December! I would be happy to speak to you more if

you have more questions. I don't want to suggest that Dr. Katowitz is the only dr as there are several that have excellent reputations. I just wanted to let you know that we have had a very good experience. Anne WeberChicago, IL USAFrom: ndaiutolo <ndaiutolo@...>Subject: blepharophimosis Sling Surgery - Do eyes blink and close properly afterward?blepharophimosis Date: Thursday, August 7, 2008, 5:55 PM

Hello everyone - I can't express how thankful I am that this group

exists and that all of you are so willing to share your experiences.

I'm hoping that someone can help me.

I am a new mommy of a 4-month old little boy who was just diagnosed

with BPES.

After meeting with a pediatric opth. at Wills Eye, we were referred to

Dr. Katowitz of CHOP, and he recommended that my son get the sling

surgery done because his ptosis was severe and would affect his

vision. He also mentioned that he would not blink or be able to close

his eyes after this sling surgery was completed.

For those of you (or parents of affected children) who've had the

surgery, could you still blink and close your eyes properly? And if

not, how has that affected you with regards to sensitivity to

light/wind/sun? Do your eyes stay lubricated and do you have trouble

sleeping?

I am so frightened and confused. My husband and I want to make the

BEST decision for our son. There is no room for error - there's too

much at stake. We are not convinced that this surgery is the best

option. But we also don't want to do anything to jeapordize his

vision, either.

This is such a supportive board - we are hoping that someone can

please share their experiences with us so that we can make the most

informed decision based on real experience, not text book medical

reference manuals. Thank you in advance to everyone who responds.

[Guest guest]

Rob,

it sounds like you are on top of the situation! Our Ethan had his sling surgery at 6 months. He is now 13. We have never had the dry eye issue. He can blink, and close his eyes. The only thing I have noticed is when he sleeps his eyes tend to have a very small opening instead of shutting completely. Best wishes for you and your child. I hope the decision becomes easier as you get more information!

Emalee Barrow

From: Rob <whatteaux@...>Subject: Re: blepharophimosis Sling Surgery - Do eyes blink and close properly afterward?blepharophimosis Date: Thursday, August 7, 2008, 8:02 AM

> After meeting with a pediatric opth. at Wills Eye, we were referred to > Dr. Katowitz of CHOP, and he recommended that my son get the sling > surgery done because his ptosis was severe and would affect his > vision. He also mentioned that he would not blink or be able to close > his eyes after this sling surgery was completed.> For those of you (or parents of affected children) who've had the > surgery, could you still blink and close your eyes properly? And if > not, how has that affected you with regards to sensitivity to > light/wind/sun? Do your eyes stay lubricated and do you have trouble > sleeping? With my ptosis sling repair (40-ish years ago), I've always been able to blink and close my eyes fully (both awake and asleep) as well as wink, leer, ogle, peer, peep, squint and stare (all necessary/useful skills for us blokes).Maybe it's just

the way HE (Katowitz) does the operation? If he's sure that not being able to blink or close one's eyes is always a permanent result of his surgery, maybe he's doing it wrongly; I'd be looking for a second or third opinion; i.e. find a surgeon who is GOOD at his/her job. If he's suggesting those are temporary (just during healing perhaps) or rare effects, fair enough, but I'd be looking for better long-term results, otherwise.> I am so frightened and confused. My husband and I want to make the > BEST decision for our son. There is no room for error - there's too > much at stake. We are not convinced that this surgery is the best > option. But we also don't want to do anything to jeapordize his > vision, either.Quite right, and very wise. Therefore, I always shop around and talk to (i.e. interview without mercy) alternative medicos, even if it involves interstate travel. Other

folks on this forum have taken their business overseas to get the best help. In my experience, not everyone who calls themselves an ophthalmic surgeon is necessarily experienced or good at their job or at a particular surgical procedure, and even those who are experienced and good will differ from each other in their approaches and effectiveness or results.Rob WOz

[Guest guest]

Yes, the best situation is to research others on this site who have had the surgery. It can be done in such a way that it is barely noticealbe. You child should be able to utilize his eyes as any other, blinking,.... I have seen some beautiful surgery results in the photos posted on this site.. I suggest you take time out to look through the photographs on ths site, there are many, but you will find the right surgeon through a happy satisfied customer. My daughter had the surgery when she was 9 months old and she is able to use her eyes as any other, except for a slight opening while sleeping...but her daughters have not had the surgery and they sleep with thir eyes open a bit too! My daughter does have bumpy scars where they cliped the fold (by the nose bridge). The doctor told me to have a plastic

surgeon repair them when she healed, but unfortunately I could not afford it. By the way, Crippled Children's Orginization paid for the surgery. My family doctor recommended us to them. That was 35 years ago, but it might be a resource to help pay if you have to travel for the surgery as we did. I don't remember the doctor hwo performed the surgery, but he was in Northern CA at that time. Good luck, and keep looking for the best surgeon you can find. He should be able to show you sucess pictures of his patients.

Patsy

From: Rob <whatteauxoptusnet (DOT) com.au>Subject: Re: blepharophimosis Sling Surgery - Do eyes blink and close properly afterward?blepharophimosisDate: Thursday, August 7, 2008, 8:02 AM

> After meeting with a pediatric opth. at Wills Eye, we were referred to > Dr. Katowitz of CHOP, and he recommended that my son get the sling > surgery done because his ptosis was severe and would affect his > vision. He also mentioned that he would not blink or be able to close > his eyes after this sling surgery was completed.> For those of you (or parents of affected children) who've had the > surgery, could you still blink and close your eyes properly? And if > not, how has that affected you with regards to sensitivity to > light/wind/sun? Do your eyes stay lubricated and do you have trouble > sleeping? With my ptosis sling repair (40-ish years ago), I've always been able to blink and close my eyes fully (both awake and asleep) as well as wink, leer, ogle, peer, peep, squint and stare (all necessary/useful skills for us blokes).Maybe it's just

the way HE (Katowitz) does the operation? If he's sure that not being able to blink or close one's eyes is always a permanent result of his surgery, maybe he's doing it wrongly; I'd be looking for a second or third opinion; i.e. find a surgeon who is GOOD at his/her job. If he's suggesting those are temporary (just during healing perhaps) or rare effects, fair enough, but I'd be looking for better long-term results, otherwise.> I am so frightened and confused. My husband and I want to make the > BEST decision for our son. There is no room for error - there's too > much at stake. We are not convinced that this surgery is the best > option. But we also don't want to do anything to jeapordize his > vision, either.Quite right, and very wise. Therefore, I always shop around and talk to (i.e. interview without mercy) alternative medicos, even if it involves interstate travel. Other

folks on this forum have taken their business overseas to get the best help. In my experience, not everyone who calls themselves an ophthalmic surgeon is necessarily experienced or good at their job or at a particular surgical procedure, and even those who are experienced and good will differ from each other in their approaches and effectiveness or results.Rob WOz

[Guest guest]

Just a side note, My son had Bleps, 20/20 vision and no surgery, my granddaughters will not be having the surgery ( by choice of both parents) and they both wear glasses. Wearing glasses is as genetic as hair color...not always related to Bleps... both parents wear glasses, as do both grandparents. Surgery is not always the best solution. You must decide what is best for you and your family. Scroll to the bottom and click on photos...my daughter and grandaughters are posted as Hailey and Shelby...what ever your choices...I wish you and your family love and sunshine.

From: Rob <whatteauxoptusnet (DOT) com.au>Subject: Re: blepharophimosis Sling Surgery - Do eyes blink and close properly afterward?blepharophimosisDate: Thursday, August 7, 2008, 8:02 AM

> After meeting with a pediatric opth. at Wills Eye, we were referred to > Dr. Katowitz of CHOP, and he recommended that my son get the sling > surgery done because his ptosis was severe and would affect his > vision. He also mentioned that he would not blink or be able to close > his eyes after this sling surgery was completed.> For those of you (or parents of affected children) who've had the > surgery, could you still blink and close your eyes properly? And if > not, how has that affected you with regards to sensitivity to > light/wind/sun? Do your eyes stay lubricated and do you have trouble > sleeping? With my ptosis sling repair (40-ish years ago), I've always been able to blink and close my eyes fully (both awake and asleep) as well as wink, leer, ogle, peer, peep, squint and stare (all necessary/useful skills for us blokes).Maybe it's just

the way HE (Katowitz) does the operation? If he's sure that not being able to blink or close one's eyes is always a permanent result of his surgery, maybe he's doing it wrongly; I'd be looking for a second or third opinion; i.e. find a surgeon who is GOOD at his/her job. If he's suggesting those are temporary (just during healing perhaps) or rare effects, fair enough, but I'd be looking for better long-term results, otherwise.> I am so frightened and confused. My husband and I want to make the > BEST decision for our son. There is no room for error - there's too > much at stake. We are not convinced that this surgery is the best > option. But we also don't want to do anything to jeapordize his > vision, either.Quite right, and very wise. Therefore, I always shop around and talk to (i.e. interview without mercy) alternative medicos, even if it involves interstate travel. Other

folks on this forum have taken their business overseas to get the best help. In my experience, not everyone who calls themselves an ophthalmic surgeon is necessarily experienced or good at their job or at a particular surgical procedure, and even those who are experienced and good will differ from each other in their approaches and effectiveness or results.Rob WOz

[Guest guest]

Hi people

This may an opportunity to remind people that sharing

experiencing is great – especially for people who have recently

encountered BPES in the family.

However, recommending treatment can only be done by a

specialist. If you feel unhappy or undecided about what the specialist has

said, talk it over with your doctor or paediatrician, with a view to seeing

another specialist.

Each of us is different, and the course of treatment which is

suitable for one person may not apply to another. Please please don’t

assume that just because one person had a type of surgery at a certain age,

that that applies to you child too.

Anecdotal information, and personal experiences, have a huge

benefit to all of us – but they should never be a substitute for

professional advise.

Regards

Shireen Mohandes

London, England

[Guest guest]

Hi,

Our son, now 6 yrs old, had slings placed when he was almost 3 yrs old. While he doesn't blink all the time he CAN if he chooses to. He can close his eyes, wink, etc. But his eyes do stay open while he sleeps. We just put an ointment in at night to keep his eyes from drying out. (We live in Colorado - very dry here.) He is sensitive to sunlight so we keep a great collection of cool sunglasses around for him. He also wants goggles on when swimming - otherwise the chlorine irritates his eyes. (But it irritates mine too so it may just be our pool!)

To be perfectly honest I can say BPES is almost a non-issue for us. Some sunglasses and a little ointment at night and he's good to go. His pictures are under Eisele Family.

Best wishes to your family!

April Eisele

Colorado, USA

From: ndaiutolo <ndaiutolo@...>Subject: blepharophimosis Sling Surgery - Do eyes blink and close properly afterward?blepharophimosis Date: Wednesday, August 6, 2008, 10:55 PM

Hello everyone - I can't express how thankful I am that this group exists and that all of you are so willing to share your experiences. I'm hoping that someone can help me. I am a new mommy of a 4-month old little boy who was just diagnosed with BPES. After meeting with a pediatric opth. at Wills Eye, we were referred to Dr. Katowitz of CHOP, and he recommended that my son get the sling surgery done because his ptosis was severe and would affect his vision. He also mentioned that he would not blink or be able to close his eyes after this sling surgery was completed.For those of you (or parents of affected children) who've had the surgery, could you still blink and close your eyes properly? And if not, how has that affected you with regards to sensitivity to light/wind/sun? Do your eyes stay lubricated and do you have trouble sleeping? I am so frightened and confused. My

husband and I want to make the BEST decision for our son. There is no room for error - there's too much at stake. We are not convinced that this surgery is the best option. But we also don't want to do anything to jeapordize his vision, either. This is such a supportive board - we are hoping that someone can please share their experiences with us so that we can make the most informed decision based on real experience, not text book medical reference manuals. Thank you in advance to everyone who responds.

[Guest guest]

However I also know non-BPES enhanced children who sleep with their

eyes slightly open

Caroline

--- In blepharophimosis , emalee <emaleebarrow@...>

wrote:

>

> Rob,

> it sounds like you are on top of the situation!  Our Ethan had his

sling surgery at 6 months.  He is now 13.  We have never had the dry

eye issue.  He can blink,  and close his eyes.  The only thing I have

noticed is when he sleeps his eyes tend to have a very small opening

instead of shutting completely.  Best wishes for you and your child.  I

hope the decision becomes easier as you get more information!

>

>

> Emalee Barrow

>