familiarity with Marcus Gunn Syndrome?

[ctmom05]

Years ago my son was born with Marcus Gunn Symdrome, often referred to as the "jaw winking" syndrome. We followed thru with check ups with an eye doctor.

H is 19 now, and unlikely to continue growing, which is a good time to do the associated surgical procedure, presuming the condition does not hamper visual acuity.

Do any of the readers here have any information about, or experience with Marcus Gunn Syndrome? I would love to chat with someone who has been thru this issue.

Christine
ctmom05@yahoo.com

[Sue L.]

Try the Mayo Clinic site on the internet. They have excellent medical information on just about anything you want to know. I just researched a problem my husband has and found the answers I was looking for.

[ewriggs]

The surgery usually only addresses the "drooping" of the eye, and not the winking-with-jaw-movement aspect. Now-a-days pediatric ophthalmologists will often do the surgery for the drooping
eyelid(s) while the child is quite young.

Many people with this syndrome either find it lessens as they get older or that they learn to compensate for it.

All surgeries involve risks and the possibility of complications. Since your ds is 19, he needs to be involved in making the decision about the surgery. Be sure the ophthalmologic surgeon involved explains everything about it to the entire family, then discuss it for a few days before making a final decision. Are the benefits expected from the surgery worth the risks? What if your son experiences one of the known complications - are you all ready to deal with that? Is the benefit to be derived from the surgery worth the risks?

These are questions only your family along with your son can answer.

I'm a registered nurse with a PhD in nursing and many years experience dealing with medical-legal matters. The main thing I have found is that people frequently go into treatments without really understanding what the risks and complications might be, and making decisions about their willingness to experience a complication in order to have the possibility of the benefits.

Cheerio!