Ptosis - Does anyone have a DC with this?

[DawnAS]

Our gorgeous 14 month old DD has a left eye Ptosis (droopy eye-lid) and has had it since birth. It currently doesn't effect her vision as it isn't so low that it covers the pupil, but she does always have to put her head back to see you if she is sat on the floor.

We are due to take her to the hospital on Thursday for a check up on it. She's supposed to have them every three months but due to admin error, this is her first one in 12 months.

When it was first diagnosed, the Consultant confirmed that they would be able to do an operation before she started school, which we will insist on.

I took DD to a local play-farm place on Friday and three children asked me about her eye. As much as them asking me about it didn't upset me as I just explained that it was a 'special eye', it was the way that the parents all looked at her that upset me.

I was just wondering whether anyone had a DC with it and I'm particularly interested to hear about those DC that may have had the corrective surgery and what the results were.

hi just seen your post,my son has it in both eyes,one worse than the other.
he was supposed to have had the op 18 months ago but ive delayed it because doctors were in disagreement over which op to go for,so his op is just waiting for me!!hes 6 now and people do ask about his eye,it doesnt seem to bother him and he doesnt want the op.so im dreading the time..

it takes a little while to get used to people asking, but i wouldn't worry too much - you have plenty of time before school.

dd2 doesn't have ptosis, but had cosmetic surgery on her left eye this summer (she's nearly 7) and i'm already amazed at the difference.

people just look when they see something a bit different - they aren't judging. just try and catch their eye and smile, and let them know that you don't mind their dc's asking questions - they were probably mortified about that.

i've lost count of the number of times children have asked 'what's wrong with your baby's/ child's eyes?'

that said - i wouldn't use 'special' tbh - just explain in simple terms - we say 'her muscles don't work quite the same as yours, so she might have to wear glasses/ have an operation to help'. 'special' is a bit twee for me, am thankful that most places are now using 'additional needs' rather than 'special needs' (mn not withstanding...)

Success rates vary greatly from case to case and technique to technique.

But most people only need one surgery.

Most people have success in lifting the eyelid but getting symmetry with the other eye is unlikely.

Very rarely the eyelid does not recover full movement.

You'll have a couple of discussion with the surgeon before you decide on an operation and they'll be able to give you more specific advice.

I am currently having my daughter's ptosis treated by a cranial chiropractor who thinks this is due to birth trauma. We are on our 2nd session and will continue with up to five to see if this works (this releases the compression on the nerve which controls the eyelid muscle). I am not keen on the operation option next year so wanted to try all non-NHS methods first.

Has anyone else had success with this method?

I'm afraid there is no reason to think that could work and no evidence that it is effective.

It's understandable to be concerned about any surgery but heading down the route of implausible and unproven options isn't a good idea.

I have ptosis as does my dd my mum my brother and several other relatives. it's a symptom of a rare eye condition which runs in the family.

dd had an op at 14 months as her pupils weren't completly unobsured, then another at 2 and a half when one of the lids dropped. Her eyes aren't fully open still and aren't symetrical. (but they chose not to make them open too wide as I am really concerned about exposure if they don't shut. THe first op was with supramide, the second with silicone, both brow suspensions.

my mum had the op done (she's in her 60's) with silicone as she was so impressed by the results for dd. And I had the silicome sling surgery myself a couple of years ago as it wasn't availible when I was a child (I had partial lid removal as a toddler, which, as you can imagine, has screwed my eyes up completely!) one eye is great, the other one has never been comfortable :( (but they accidentally cut my eyeball during the surgery and my eyes don't heal properly due to the exposure problems I have from the partial lid removal)

I took dd to a chiropractor as he seemed to think he could help dd with ptosis and her nystagmus but stopped after a couple of sessions as the stuff he was doing for me seemed inaffective and dd found it distressing (many many sensory issues)

will talk more when I'm not at work :)