Does Your Child Have Congenital Ptosis

My son had ptosis in both eyes also. The doctor was very concerned about his head posturing and so he had surgery to correct it in April 2006 just before his second birthday. I'm not really sure I understand what the second surgery you mentioned is for.

If you decide on a second opinion, my son's Dr. is wonderful. I don't know where you live, but it may be worth a drive if you are close enough to Erie.

I'll try to answer as many questions as I can and I can email you pictures of my son before and after the surgery if you are interested in seeing them. Anyway, the surgery took about 45 minutes and went so well. You really need to prepare yourself for how your daughter will look immediately after the surgery. The best way to describe it is a really surprised look. Her eyes will be open very wide and she will not be able to close them. My son recovered very quickly, he was running around and playing like nothing happened that night.

You will have to put ointment in her eyes and on the incisions a few times a day for a couple of weeks. You can buy the ointment at any drugstore and we still use it occasionally when Josh's eyes get dried out. It was a few of weeks before he started to sleep with his eyes closed again, (mostly closed anyway). They close a little more everyday for the first couple of weeks after the surgery. My son still sleeps with his one eye open, but only a sliver. The crease in his eyelids gets a little red and irritated occasionally so we just put some of the ointment on his eyes at bedtime and the redness is usually gone by morning. Other than that we have had no problems at all. You can't even see the scars anymore and he has very fair skin.

Josh was a preemie so his development was behind already, but the surgery made a huge difference. He could see things he couldn't see before, he speech really took off, and you could tell his balance and motor skills really improved.

I hope I answered at least some of your questions. Feel free to ask anything and I can send those pictures if you want.

H.

I think you should get a second opinion just for peace of mind. Then you need to write down all of your questions that you have including whwat you just posted.
As a mom of a special needs child, I have found that asking the professional first, always gets to the root of the problem.
You have a right to feel selfish. I too get selfish with having NO time due to the fact my child has issues and I run around all the time.

Good Luck
N.

I have not experienced this myself, but have worked with children with rare disorders in the past. You may check with the doctor's staff to see if there is a parent he's worked with that may be willing to talk to you. May God bless and protect your family.

My son (12months) just had surgery for ptosis and I have had a similar experience to that of Heather. The surgery just happened in December 2006 and already he is closing his eye most of the time. We use the ointment only to make sure it does not dry out. There is still minimal swelling and we can see where the incisions and stitching were, but most people can't even tell and this will fade over time. I keep thinking about how long it took my c-section to fade:)

As for the shape of your daughter's eye, it's not so much the shape of the eye that is changed as the height of the lid. Also, the surgeon should take a number of pictures before surgery to determine where to make the incision and how high to make the lid to make the eye look natural.

Our surgeon said that he will have to have surgery again before kindergarten using the tendons from the thigh. This is the only way to make the procedure permanent because the nylon is new invention (past 5 years) and they are unsure of how long it will last.

I think it was much more stressful on my husband and myself than it was on our son. He slept a lot after surgery and then the next day acted like nothing happened. Also, you should be prepared for after surgery. My son was a preemie and spent time in the NICU so I was used to all the monitors and things hooked to him, but wouldn't have been ready for that at all if I had not gone through it before. His face was also super swollen because of all the fluids and I think he weighted like 5 more pounds.

But let me tell you, within a week after the surgery he was crawling around, pulling up on things, and doing lots of things developmentally he had never done before. The developmentalist said we would probably see a whole new child, but I didn't know it would happen so fast. I feel that the surgery was completely worth it.

I would just make sure that you have a surgeon you trust and feel is reliable. We had the surgery done at CHOP by one of the top pediatric opthamologists in the country. He literally wrote the book on childhood ptosis.

Where are you having the surgery? If you have other questions or want to see pictures, let me know.

Good luck.

Hello!

As a baby I was diagnosed with congenital ptosis in both eyes. I got my first surgery when I was 4 and that helped tremendously. It is true that my eyelids do not close all the way when I am sleeping and that does cause them to dry out a bit. I do use eye drops on a regular basis. Now that I am 27, I will be getting my second surgery on June 16th. I have always had almond shaped eyes and my first surgery didnt alter that, so I am confident that this next one wont either. I am quite excited to see the results. I will update everyone on how it looks!! Thank you!

Jeanetta,
Although our situation was very different, (my daughter was born with cross eyes and it never became normal)She had surgery at 6 months old. the hospital we chose was excellent. Please check out Wills Eye Hospital in Philadelphia. It is the best around. Always get second and third opinions. It is scary when it's your baby. Please let us know how it goes.
Blessings,
A.