Re: How high to lift the lids??

[Guest guest]

Hi Dawn

My daughter Evie had this op a couple of years ago using a ligament from her thigh.

The surgeon just about got it right, with only a slight variation between left and right eye.

Evie's lids were lifted fairly high, by that I mean higher than just exposing the pupil of her eye. What this has menat is that when she closes her eyes, especially to go sleep, her lids don't quite close properly. This can be a bit disconcerting as she sometimes looks like she's asleep with her eyes open! The other side effect is that she often wakes up with 'crusty' eyes in the morning . We have been advised to put drops in her eyes before she goes to bed to keep them lubricated and this seems to be working quite well.

I hope this information is helpful to you

all the best

shena

Ps I have already posted a photo of Evie before her op and have just taken a couple of others to show the difference - I'll try and get them uploaded today.

blepharophimosis How high to lift the lids??

Hi,I am currently searching archived messages because two of my daughter 's doctors have a difference of opinion, and I'm searching for more info. Her first surgeon planned to lift her upper lids quite high. "Crank them up there" were his words. He went on an extended medical leave the week before 's scheduled surgery. We got a new surgeon who only raised the lids to the pupil in order to protect the eye from too much exposure. Now, a year later, he is scheduled to re-do the ptosis repair in January because it is still too low. For those of you who've had surgery, I'm wondering what other doctors' philosophys are on how high is safe to raise the lids and wondering if we should seek a third opinion before going through the surgery again.Thanks for your input!! Dawn

[Guest guest]

Dawn wrote:

>

> Hi,

>

> I am currently searching archived messages because two of my

> daughter 's doctors have a difference of opinion, and I'm

> searching for more info. Her first surgeon planned to lift her

> upper lids quite high. " Crank them up there " were his words. He

> went on an extended medical leave the week before 's

> scheduled surgery.

He sounds like a loser. Bzzzzt. Next contestant please...

> We got a new surgeon who only raised the

> lids to the pupil in order to protect the eye from too much

> exposure. Now, a year later, he is scheduled to re-do the ptosis

> repair in January because it is still too low.

Has he done ptosis repair before? At first glance it looks like he's

still learning, by trial and error. " Just a few more attempts. I'll get

it right for the next patient, or the one after that, I promise... "

Bzzzzt. <Pull handle, trap door opens, quack falls>

> For those of you

> who've had surgery, I'm wondering what other doctors'

> philosophys are on how high is safe to raise the lids and

> wondering if we should seek a third opinion before going

> through the surgery again.

I'd definitely get a third opinion, or a fourth or a fifth. (Nil

illegitimus carborundum!) I always make sure they've done it before -

successfully - and, for ptosis, *know* how to judge the right amount of

lift. (It must to be high enough to clear the pupil, but still enable

the lids to meet during sleep.) If my surgeon could get it right, first

time, 40 years ago, when the techniques were still experimental, these

wallies should be able to get it right today. I always try to keep in

mind that I am the employer and the mere doctor is my employee (if he's

lucky): if they don't measure up, they don't get the job. (And I always

call them by their first name, never " Doctor Blah " ; let them know where

they stand - they respect that, breaks down barriers, etc)

It sounds harsh, but our chidren are too precious to allow dodgy medical

staff to use them as learning opportunities.

There, I've had my rant, and feel much better now. Thanks for listening.

Rob

(40 degrees C here today, can't you tell?)

[Guest guest]

Hello Dawn,

Our grand daughter was born on April 2 this year she has BPES,. We discussed this with the eye surgeon and the plastic surgeon late May. The plastic surgeon opinion was that an operation from his field of knowledge was far to early but the eye surgeon argumented that the eyepupil should be exposed to light in order to develop properly. She won the discussion. After the op was not able to close her eyes completely, even at sleep she had them opened a little bit. Her eyes were treated with a gel to prevent them from drying out. Today we visited the hospital and after several eyetests everybody was very content with the results. She still does not close her eyes completely and the surgeon adviced to continu with the gel not for medical purposes but for prophylaxe. (Just have a look at Heidemans pics)

I must say that the words the first surgeon used, have a bad connotation to me but of course I am not an English native speaker. I understand your dilemma and if I were in your place I'd definately go for a third opinion. deserves that I think!!!

Hope this helps. I wish you strength,

Dolph

blepharophimosis How high to lift the lids??

Hi,I am currently searching archived messages because two of my daughter 's doctors have a difference of opinion, and I'm searching for more info. Her first surgeon planned to lift her upper lids quite high. "Crank them up there" were his words. He went on an extended medical leave the week before 's scheduled surgery. We got a new surgeon who only raised the lids to the pupil in order to protect the eye from too much exposure. Now, a year later, he is scheduled to re-do the ptosis repair in January because it is still too low. For those of you who've had surgery, I'm wondering what other doctors' philosophys are on how high is safe to raise the lids and wondering if we should seek a third opinion before going through the surgery again.Thanks for your input!! Dawn

[Guest guest]

Thanks so much, everyone, for your input. One more question to

Shena and others...did the surgeons attach the sling at the

eyebrow and then up to the forehead as well? 's first

surgeon was planning to do this. (Rob, the guy seemed pretty

great, actually...he had some major medical thing -- cancer? --

that had everyone at Children's acting very somber when his

name was brought up.) Our new guy said he doesn't find he

needs to attach to the forehead to get enough lift, but then he

does many more of these surgeries on adults than on children

with congenital ptosis. Since the first wasn't high enough, I'm

wondering if it actually IS important to attach to the forehead in

these cases.

Rob, thanks for your suggestions and encouragement regarding

approaching the docs. We discussed her case with 4 surgeons

and felt like we had the best option available. Now I'm wishing I

would have made sure I had this issue resolved better before

her sling surgery. When you're using the docs from your state

medical school and children's hospital, it's hard to know where

else you could go where they'd have more experience. As her

craniofacial surgeon said, " I've probably done about as many of

these as anyone has...there's no one who's done a ton of them. "

(This referring to canthopexies on kids with bleph; 's also

had a skin graft to add extra skin to her lower lid. This also will

be " repaired " during her January surgery -- when they attached

her lower lid to the skin graft, they attached it so her lashed are

poking her in the eye and now it's hurting her and affecting her

vision. GRRRRRR!!!!)

Anyway, I'm guessing many of you have the same difficulty

having confidence in any doctor who is messing with your child's

sweet face. I saw Joe's email regarding searching for a top

surgeon, and not many people emailed back with suggestions

which gives me the impression that many of us feel nervous and

unsure.

Thanks again for your input! Dawn

[Guest guest]

Shena,

I just peeked at your cute pictures of Evie -- thanks so much for

posting them. Our girls are close in age, ( is 6), and it looks

like they both have beautiful long, reddish-brown hair. Her

eyes look great -- I was surprised at how open they

were...makes me want to talk more with my doctor regarding his

concerns about raising them too high. 's craniofacial doctor

who's treated several cases of bleph (he did the canthopexies

and the skin graft) said he thought they were too low, but the

opthomologist is concerned about damage from too much

exposure. He keeps saying that we need to focus on improving

her function, which I absolutely agree is most important, and we

shouldn't compromise her eyesight. However, I don't think he

appreciates how difficult it is to always have to answer " the

question " from other kids about why her eyes don't open much.

She hates it.

The more I talk the more I'm convinced we need another opinion

before this surgery. Thanks again! Dawn

P.S. Who/where is the doctor who did Evie's sling?