I have a five year old daughter who was born with marcus gunn jaw wink with ptosis. We have been waiting till she was 5 to have the surgery to correct. The procedure they want to perform is a bilateral sling. Both her good eye and her bad while have the surgery so they will both be aligned the same. Basically he is telling me she will have to raise her eyebrows to have her lids open and she will adjust to it fast. I am just wondering if anyone has had this procedure done and what is the out come. Her surgery is scheduled for oct 20. I am very nervous about this since mgjw is so rare and they don't have a lot of info on the web.

thank you
Hopes mom

I have marcus gunn, and I am currently 25 years old. I live in the northeastern part of the US and I went to a doctor near pittsburgh pennsylvania. When I was five, the performed a surgery on my right eye (the one effected with MG) and it turned out great. They took a ligament from my right leg, and hiked my eyelid up. They made several incisions, but you can't even see them now. I wish I could show you a picture of my eye right now, because there is a slight difference between my eyes....the one looks normal, the other kinda looks a bit more..shut then the other.

My doctor was a genius, and he said it was the best surgery he had performed as far as marcus gunn goes (he had done ten surgeries concerning MG before, which is a HUGE amount considering the rarity of MG)

Anyways, I would suggest that surgery to anyone.

I wear my hair in a peek a boo style, so most of the times it appears that my eyes are completely normal. As I got older, the muscles around the ligament got stronger and my eye is more....normal looking.

Question--are both eyes effected? or only one? I feel for you totally... you have one huge decision to make.

Hello,

I would be really interested to hear how the surgery goes and wish you well. My daughter is 4 and a half and I have been reluctant to have the surgery done, although am concerned as she has just started school.

As someone who has had the surgery done I would highly suggest it--if not for reasons to have you child see better, for cosmetic reasons as well--which may seem a bit vain and unnesscary, but middle school is a scary time and I remember coming home crying from being called "one-eyed willy" and other nasty names. And I had the surgery done! I couldn't imagine not having it....I am sure it would have been worse. As the years went by, it got less noticable, and barely anyone asks about it now. I even forget my eye has a defect in it from time to time.

The only vision "problem" I have is that I have no depth preception at far off lengths because my eyes do not work well with each other. I can still drive a car and it really doesn't effect me at all (except I am lousy at baseball :p).

I also suggest that you research your doctor. Ask fo rsecond opinions and make sure they know what they are doing. As something as delicate as this, you want the best doctor working on your child's eyes.

As a side note, I recently had a son, and he did not have marcus gunn. So if your daughter later worries about getting pregnant, maybe my case will make her feel better.

My daughter has this and is 4 and a half and I would be really interested to hear how the surgery does. Best of Luck!

I just feel she is too young right now although I am worried about her being teased. Also I really dont like the idea of her having to be operated on both eyes, when one is perfectly fine. She doesn't really notice, ex:wave: cept in bright sunlight and she tells anyone that asks that she 'just gets a sleepy eyelid' sometimes...

It does seem an awful shame to have the perfectly good eyelid operated on. You need more information and another opinion from a good oculoplastic surgeon.
There is a danger of ptosis causing amblyopia, as lex jude mentioned about the depth perception. When the vision is blocked, or interfered with in one eye at a young age, the brain starts to turn images from that eye off, or it switches from one eye to the other resulting in monocular, rather than binocular, vision and no depth perception.

Hope you get all the information you need and can go ahead with confidence that you're doing the right thing.

It does seem an awful shame to have the perfectly good eyelid operated on. You need more information and another opinion from a good oculoplastic surgeon.
There is a danger of ptosis causing amblyopia, as lex jude mentioned about the depth perception. When the vision is blocked, or interfered with in one eye at a young age, the brain starts to turn images from that eye off, or it switches from one eye to the other resulting in monocular, rather than binocular, vision and no depth perception.

Hope you get all the information you need and can go ahead with confidence that you're doing the right thing.


I agree with you wholeheartedly. I would ask for a second opinion myself.

Thanks for your advice again - I am going to look into this further