RE: Materials used for the sling surgery....

[Guest guest]

Hi Min,

Not a comprehensive reply to your questions and I would like to hear

more about what you find in your research, but here's our story. Our

son had the synthetic strings used at 3 mos. and then again at

9 mos (due to significant growth that caused the strings to stretch

and lids to droop again). Our doctor has done many ptosis operations

in the past using the facia lata, but he said was too young and

in order to use the facia lata, his legs needed to grow (could use

around age 4 or 5? don't remember exactly).

Our opthalmologist had also recently tried this new synthetic with

good results on his patients, and said if this material turns out

well, it has less trauma on the child (no incision and scarring on

the leg in addition to the sling incisions).

Our results: did very well with the first surgery with no

complications, but after his second surgery, he started rejecting

pieces of the old strings that had been left in his eyelid.

(supposedly they're thin strings and grow into the tissue and are

more traumatic to remove than to leave in). His eyelid would

basically form a reddened bump and swell until we saw a white piece

of plastic begin to make its way to the surface layer of the skin.

Eventually the piece would fall off. I saved the ones I caught and

our opthalmo. kept them with 's file for evidence. Our doc had

another patient that was doing worse than with the strings and

had to even redo his surgery. Luckily for us, thus far hasn't

had any major effects from this (like the swelling blocking his

vision) but our doctor says he's not goign to use this material with

(or probably with his other patients) again. Our next sling

surgery will probably be next year when is 2 yrs old and I'm

not sure what material will be used.

My last note: Our doc went to a conference the manufactuers of the

synthetic string held and questioned them about why two of his

patients were rejecting the string. He says they told him he was the

only doctor in the whole country who was having problems with this

material and did not help him at all. Needless to say, he was not

happy with them.

I've forgotten the name of the material or the manufactuer but I can

find out.

Hope something here helps.

Debbie

[Guest guest]

Hi Min

Our experience is (me and Emy) Mr Collin, at Moorfields, London suggested we wait until emy is age 4 and then use the facia lata from her own leg, as this 'material' is the closest thing to her body and will have the least chance of reacting. I remember something about 'foreign' material being more likely to react, cant remember exactly what was said (seams like a long time ago now).

I also waited (till I was 14) and used facia lata and both ops have been incredibly successfull. Both of us having 2 operations.

In our case it was ok to put off surgery till a little older, as we could see enough through our eyelids. (except for me my sight has definately been affected by waiting till I was 14).

I understand all situations are different and it is important to keep going till you get a surgeon/consultant you feel is right.

Good luck.

Clare and Emy Teale

minnielin202 <minnielin202@...> wrote:

Hi All,I'm in the middle of doing research on the materials used for the sling surgery for my daughter, Jasmine. When I had the surgery done, the Dr. used the fascia lata. As parents who had their children undergo this surgery, what was the material of choice and why? Does anyone know the pros/cons of the materials? So far in my research I found that the fascia lata is the best choice. But can this be used so early in the child's life and if so, how is the child developing after surgery? We had a surgical consult the other day and the surgeon mention about silicon sling (which I never heard of). When I asked him of side effects and reactions to it from his patients, he was unwilling to answer and pretty much ignored the importance of the question (thus searching for new

surgeon..Thanks for the info!) He mentioned that the silicon sling would be a temporary solution and later on Jasmine will go through surgery again using the fascia lata. I am not comfortable with temporary solution. If my daughter is going to go through surgery, I would like to do it right the first time (if possible).So can anyone out there educate me on the benefits of silicon and if your child had any reaction to it? What other materials are available? Pros/cons. After using the silicon, was there any reoccurrence of ptosis where more corrective actions were taken?Thanks so much!Min

[Guest guest]

The surgeon used the facia lata from my oldest son Austin when they did his surgery 5 years ago and the results are wonderful. When my youngest, Garrett had surgery in July they used the synthetic. The surgeons reasoning behind that was because Garrett was too skinny and he still needs another surgery when he's about 13 or 14. He said he would take the facia at that time. Garrett had a more severe case than Austin. His is nothing compared to the results of Austin. Garrett's right eye is not raised as high as the left. The surgeon said that it was so tight there that he raised it as high as he could get it. They still look good compared to what they looked like before and this surgeon is the best around, so i'm not doubting his work at all. He wants to redo my eyes. As much as i would like to have the crease in my eyelids like most other people, i've looked like this for too many years to want to change now.

[Guest guest]

> I'm also looking into if parents can be a donor of

> facia lata for their child since the child's leg is

> not mature enough for use. So far, no success in

> finding this info!

When I had my fascia lata slings done almost 40 years ago (and they're

still doing fine, but tire easily these days), it was common to use

donor fascia lata if the child was young (like I was I guess). One thing

to note is that the donors weren't necessarily alive or related.

(Doctor: " Igor, we need more fascia lata. Get your shovel, it'a a full

moon tonight... " ) :-)

I get the impression that fascia lata isn't the kind of tissue that the

body rejects, so any will do? So, it seems reasonable to assume that

parents would also be able to donate, but needn't.

According to Callahan ( " Surgical correction of the blephrarophimosis

syndromes " , 1972), it's easier to achieve summetry with Silastic bands

(is this the same as silicone?) than with natural fascia lata, whether

autogenous (one's own) or " preserved " (fetched by Igor some time ago).

But others differ...

A quick Google (terms: ptosis fascia lata silicone) found this:

http://www.blepharoplasty-eyelid-surgery.com/ptosis_mngmnt.htm

which says all sorts of things, including...

" Congenital severe ptosis with little levator excursion is best

served with autogenous fascia lata grafts. Nonautogenous materials are

available and can be used if necessary; however, the long-term results

are poorer than with autogenous materials. Acquired severe ptosis, such

as seen with third nerve palsy, progressive external ophthalmoplegia, or

oculopharyngeal dystrophy, is best treated by frontalis suspension using

a silicone (Silastic) rod because of its adjustability and the

possibility for subsequent removal if the cornea becomes compromised. "

....and...

" Generally, autogenous fascia lata gives more predictable and

long-lasting results. Eye-bank-preserved tissues [igor's] can be

utilized when the patient is younger than 3 years of age or at the

family's request. "

....and it goes on to describe the fascia lata " mining " operation in far

more detail than I want just after dinner, thank you very much.

And that's just the first Google hit. There's tons of info out there, folks.

Rob

Remember September 19 is International Talk Like a Pirate Day, me

hearties. Yarrrr.

[Guest guest]

Dear ,

Can you tell us the name of your surgeon? And his address?

Kind regards

Lata & Deepak Feichtner <mfeichtner@...> wrote:

The surgeon used the facia lata from my oldest son Austin when they did his surgery 5 years ago and the results are wonderful. When my youngest, Garrett had surgery in July they used the synthetic. The surgeons reasoning behind that was because Garrett was too skinny and he still needs another surgery when he's about 13 or 14. He said he would take the facia at that time. Garrett had a more severe case than Austin. His is nothing compared to the results of Austin. Garrett's right eye is not raised as high as the left. The surgeon said that it was so tight there that he raised it as high as he could get it. They still look good compared to what they looked like before and this surgeon is the best around, so i'm not doubting his work at all. He wants to redo my eyes. As much as i would like to have the crease in my eyelids like most other people, i've looked like this for too many

years to want to change now.

[Guest guest]

Lata & Deepak,

Here is the surgeon that i've used for my 2 sons. This gives you a little info. about him as well. You can go to the Cincinnati Eye Institute web site if you want to read some more http://www.cincinnatieye.com/physician/specialty-ophthalmic.htm

Dr. Dwight Kulwin

3219 Clifton Avenue, Suite 210Cincinnati, OH 45220513-281-2390

Dwight R. Kulwin, M.D., F.A.C.S.

Dwight R. Kulwin, M.D., F.A.C.S. is an Ophthalmic plastic surgeon at Cincinnati Eye Institute (CEI). He is a graduate of University of Illinois and received his medical training at University of Chicago College of Medicine. After completing his Residency training inOphthalmology, he completed a Fellowship in the specialty of Ophthalmic Plastic surgery at University of Texas. He is currently an Associate Professor of Ophthalmology at University of Cincinnati College of Medicine and head of the Section of Ophthalmic, Plastic, Reconstructive and Orbital Surgery. He is a member of American Society of Ophthalmic Plastic and Reconstructive Surgery and was given the honor of delivering the prestigious Wendell L. Lecture at the American Academy of Ophthalmology in 1996.

Dr. Kulwin is Board Certified in Ophthalmology, a Diplomate of the American Society of Ophthalmic Plastic and Reconstructive Surgery, and a Fellow of the American College of Surgeons. Dr. Kulwin has written over 100 articles and book chapters on eye plastic surgery and has lectured widely throughout the UnitedStates and abroad. He is nationally recognized in Best Doctors in America and has been listed in Who’s Who in Medicine and Healthcare

[Guest guest]

I am not sure how much my experience will help but my son ( Lynden ) did not have the fascia done, he had the "SILICONE RODS "put in , our doctor said that they are permanent and I am not exactly sure if they are the same as the sling....... if anyone knows and cares to let me know please do, my son has had 4 surgeries and has done very well, he has had his silicone rods in since 6 weeks of age and is now 7 years old. I know my son's experience is different from a lot of the people in this group so that is why we had to go with the rods and the early surgery. my son's vision would have been severely compromised if we had waited to do surgery and the only option was the brow lift with the rods..... I actually did not know I had a choice of other "materials" until I joined this group. but since talking to our surgeon he said it would have not been an option at the time. ( due to vision ).

Tonikka

-----Original Message-----From: minnielin202 [mailto:minnielin202@...]Sent: September 17, 2004 3:59 PMblepharophimosis Subject: blepharophimosis Materials used for the sling surgery....Hi All,I'm in the middle of doing research on the materials used for the sling surgery for my daughter, Jasmine. When I had the surgery done, the Dr. used the fascia lata. As parents who had their children undergo this surgery, what was the material of choice and why? Does anyone know the pros/cons of the materials? So far in my research I found that the fascia lata is the best choice. But can this be used so early in the child's life and if so, how is the child developing after surgery? We had a surgical consult the other day and the surgeon mention about silicon sling (which I never heard of). When I asked him of side effects and reactions to it from his patients, he was unwilling to answer and pretty much ignored the importance of the question (thus searching for new surgeon..Thanks for the info!) He mentioned that the silicon sling would be a temporary solution and later on Jasmine will go through surgery again using the fascia lata. I am not comfortable with temporary solution. If my daughter is going to go through surgery, I would like to do it right the first time (if possible).So can anyone out there educate me on the benefits of silicon and if your child had any reaction to it? What other materials are available? Pros/cons. After using the silicon, was there any reoccurrence of ptosis where more corrective actions were taken?Thanks so much!Min

[Guest guest]

Hi there,

Our son Ethan is 19 months old, and we were told from the beginning that he would have surgery around 4-5ish yrs old, leaving it as long as possible for better results as the skin is more mature etc... as long as it is not affecting his eyesight, which thus far has not thank goodness:) He just had his 18 mth check and now he will probably have a temporary ptosis lift at age 2, as he doesn't have any movement in his top eyelid, they will do a permanent one at about age 5ish as they prefer to use his own tissue from his thigh-leg to do the permanent lift, which isn't mature enough til around 5-6 years old, thats our understanding why they will use a synthetic material to do just a temp lift, and use his own tissue for the permanent? There is soooo many different opinions out there, and gets very confusing!

-- RE: blepharophimosis Materials used for the sling surgery....

I am not sure how much my experience will help but my son ( Lynden ) did not have the fascia done, he had the "SILICONE RODS "put in , our doctor said that they are permanent and I am not exactly sure if they are the same as the sling....... if anyone knows and cares to let me know please do, my son has had 4 surgeries and has done very well, he has had his silicone rods in since 6 weeks of age and is now 7 years old. I know my son's experience is different from a lot of the people in this group so that is why we had to go with the rods and the early surgery. my son's vision would have been severely compromised if we had waited to do surgery and the only option was the brow lift with the rods..... I actually did not know I had a choice of other "materials" until I joined this group. but since talking to our surgeon he said it would have not been an option at the time. ( due to vision ).

Tonikka

-----Original Message-----From: minnielin202 [mailto:minnielin202@...]Sent: September 17, 2004 3:59 PMblepharophimosis Subject: blepharophimosis Materials used for the sling surgery....Hi All,I'm in the middle of doing research on the materials used for the sling surgery for my daughter, Jasmine. When I had the surgery done, the Dr. used the fascia lata. As parents who had their children undergo this surgery, what was the material of choice and why? Does anyone know the pros/cons of the materials? So far in my research I found that the fascia lata is the best choice. But can this be used so early in the child's life and if so, how is the child developing after surgery? We had a surgical consult the other day and the surgeon mention about silicon sling (which I never heard of). When I asked him of side effects and reactions to it from his patients, he was unwilling to answer and pretty much ignored the importance of the question (thus searching for new surgeon..Thanks for the info!) He mentioned that the silicon sling would be a temporary solution and later on Jasmine will go through surgery again using the fascia lata. I am not comfortable with temporary solution. If my daughter is going to go through surgery, I would like to do it right the first time (if possible).So can anyone out there educate me on the benefits of silicon and if your child had any reaction to it? What other materials are available? Pros/cons. After using the silicon, was there any reoccurrence of ptosis where more corrective actions were taken?Thanks so much!Min

[Guest guest]

Hi,

My daughter (now 6) had a ptosis repair using donor fascia

about 1 year ago. She is now scheduled for her 4th surgery

(GRRRR) in January where they will re-do the sling on her right

eye. Her eyes are still too droopy and covering her pupil. I'm not

sure if the fascia stretched, came undone, or if it wasn't done

high enough in the first place. (Surgeon is not very forthcoming.)

Anyway, we consulted with three surgeons on this, all of whom

recommended using fascia from an organ donor. Hope this

helps!

Dawn

--- In blepharophimosis , leelee <tltne@c...>

wrote:

> Hi there,

>

> Our son Ethan is 19 months old, and we were told from the

beginning that he

> would have surgery around 4-5ish yrs old, leaving it as long as

possible for

> better results as the skin is more mature etc... as long as it is

not

> affecting his eyesight, which thus far has not thank goodness:)

He just had

> his 18 mth check and now he will probably have a temporary

ptosis lift at

> age 2, as he doesn't have any movement in his top eyelid, they

will do a

> permanent one at about age 5ish as they prefer to use his own

tissue from

> his thigh-leg to do the permanent lift, which isn't mature

enough til around

> 5-6 years old, thats our understanding why they will use a

synthetic

> material to do just a temp lift, and use his own tissue for the

permanent?

> There is soooo many different opinions out there, and gets very

confusing!

>

>

> -- blepharophimosis Materials used for the sling

surgery....

>

>

> Hi All,

>

> I'm in the middle of doing research on the materials used for

the

> sling surgery for my daughter, Jasmine. When I had the

surgery

> done, the Dr. used the fascia lata. As parents who had their

> children undergo this surgery, what was the material of choice

and

> why? Does anyone know the pros/cons of the materials? So

far in my

> research I found that the fascia lata is the best choice. But can

> this be used so early in the child's life and if so, how is the

> child developing after surgery?

>

> We had a surgical consult the other day and the surgeon

mention

> about silicon sling (which I never heard of). When I asked him

of

> side effects and reactions to it from his patients, he was

unwilling

> to answer and pretty much ignored the importance of the

question

> (thus searching for new surgeon..Thanks for the

info!) He

> mentioned that the silicon sling would be a temporary solution

and

> later on Jasmine will go through surgery again using the fascia

> lata. I am not comfortable with temporary solution. If my

daughter

> is going to go through surgery, I would like to do it right the

> first time (if possible).

>

> So can anyone out there educate me on the benefits of silicon

and if

> your child had any reaction to it? What other materials are

> available? Pros/cons. After using the silicon, was there any

> reoccurrence of ptosis where more corrective actions were

taken?

>

> Thanks so much!

> Min

>

>

>

>

>