Ptosis and corrective surgery, has anyone been through this operation

[fridgescraps]

my son has bilateral ptosis, which means no muscles in his eyelids, we have had regular checks at Moorfields hospital, they now say that he is big enough to have the operation to raise his eyelids, I really want to speak to someone or parents of a child who has had the operation, to see how it has affected them, as I understand you can not close your eyes properly, sleep with eyes open, eyelids don't go down when looking down, and if we don't do the operation what would be the consequences on his neck from having to tip his head back constantly,
any info or contacts would be really helpful, thanks

[LindsayS79]

I had it on one eye, but I was 19 when I got it done. The surgery was quick and recovery wasn't too bad, but again I was 19...
I resorted to wearing an eye mask in bed to keep my eye closed as I found I was squinting to close it. It's not as bad now and my eyelid closes fully, but it's years down the line for me. However I never had any issues blinking etc, my eye always closed fine when awake.
Sorry I can't be of more help from a children's perspective but I'm so glad I had the op

[fridgescraps]

thanks for your message Lindsay, sorry to ask but how long ago was your operation, did you have the op at moorfields? do you think after some time the sling that holds the eyelid up stretches, would you need to have it done again at some point?
did you have any problems with your neck and posture before you had the op? (maybe you didn't need to tip your head back if it only affected one eye),
Sorry to quiz you!! but any info is helpful

[LindsayS79]

Actually I had it when I was 17 and I'm 36 now. I guess my skin has stretched slightly but certainly not to the point of it being an issue. I didn't need to tilt my head as one of my eyes was fine. I had the op in Glasgow and back then I was supposedly in and out of the op in 20 mins! My scar is tiny to the point it's barely visible. Having the op helped immensely with my confidence as I constantly covered half my face with my hair!
I was never warned about not being able to close my eye. Have they said it'll be an issue?

[wfrances]

ds11 has ptosis ,we refused the surgery.
we refused it on the basis ,his vision (other than the lid being in the way)is normal
he doesnt want the surgery
the surgeons were arguing over the best procedure!!!!
one wanted to transplant thigh muscle and make a sling and the other one was horrified and said that was too invasive for a sporty young boy.
the surgeons admitted once they started operating , he could need a lot of operations before they got it right and as he grew would need altering.
as well as the side effects you mentioned.
ds has never complained about a sore neck.
ill ask when he gets in.

[fridgescraps]

thanks for your message wfrances that's helpful, at what age was your child when you decided you didn't want to go ahead with an operation, my son is five seems to young to make a decision like that
I do worry about my son being misjudged by his eyelids, all the time people, who don't know him, are saying to him "you look tired" " he's ready to go to sleep" etc. How does your child deal with that? I don't want people to think he looks stoned when he's grown up either
Did you go to moorfields hospital, they told me the same operation that taking muscle from the thigh to make the sling for the eye, but I don't understand why the doctors were arguing? Is he saying your son wouldn't be able to run around anymore? and what was the alternative op?
have you ever spoken to a osteopath or similar about what will happen to his neck in the future,
anymore info would be helpful, thanx

[wfrances]

we said from day 1 if it was effecting his visual growth we would have it done but every eye test ,showed his vision was developing normally.
i think he was 8 when they said they wanted to operate - but hes not bothered by it and it would be only for cosmetic reasons - so we thought it was his choice.
he has been called 1 eyed (1 eye is much worse than the other) but hes only mentioned it once or twice.
hes very sporty -plays/trains rugby /football ,swims , always on his bike and scooter
he also has to contend with osgood schlatters disease (tiny stress fractures) in both legs ,and hemiplegic migraines ,the last thing we wanted was to have a dodgy thigh too.
1 consultant said that it would be worse to get over than the eye procedure.
if he wants it done for cosmetic reasons when hes older ,thats up to him.
he has no neck trouble ,
not moorfields ,
local hospital , 1 consultant was hoping to tighten what was there, but the other surgeon said "theres nothing substantial there to tighten we have to sling it up"
apparently the muscle damage in the thigh can cause pain for months.

i think at 5 your ds vision is still developing, do you know if the ptosis is affecting his vision yet?