Friday, December 3, 2010

Post-Op Appointment


There is really not much to report here. The surgeon looked at him for a few seconds and said he looks good. He said one of the ways you can tell the surgery worked in that when they look down the sling will pull that eye open more. He also said at this point it is not necessary to continue with the ointment (which I haven't been doing anyway). But the surgeon says that even though his eyelid is slightly open when he sleeps, it is shut enough to protect the eye and keep it moist.

Danny doesn't complain about his eye at all. He can shut it just fine. He does have some scars because he wouldn't stop picking at his scabs, but they are very small. They eyelids look pretty even most of the time. But he does have some faces where you can really see a difference. This is a picture of him doing a downward gaze, which is when the difference is most noticeable.


13 comments:

Two Kayaks said...

Thank you for the update. We are scheduled for surgery on the 18th of January and had a pre-op appointment yesterday. Can you tell me why the doctor did the Sling surgery instead of shortening the muscle? Our doctor wants to shorten the muscle despite the fact that our son has little to no movement in the muscle to begin with.

Tiffany said...

Since he is so little and has a lot of growing to do, the sling gives more flexibility. When you shorten the muscle, it's more permanent, so if it's too short, it's stuck that way. Hope this helps.

Anonymous said...

I'm so happyto have found your blog. My Caden has CFEOM, which has resulte in him having cingenital, bilateral ptosis, in conjunction with a fixed downward gaze. He had his second surgery, at 17 motnhs old on Friday, an eye muscle repair, with a second frontalis sling procedure to follow. Because of it's rarity, having a child with ptosis can be isolating. I'm thrilled to have found some comeradery. :)

Tara said...

It is nice to see that I'm not alone with my son's problem; I had never heard of it, or seen it before. He is almost 11 weeks and we go to the doctor again in a couple weeks. Everyone in my family tells me I'm overreacting and he'll be fine, but I see him everyday and it doesn't seem to be getting too much better. Any words of advice or hope would be much appreciated, happy new year! Tara

Tiffany said...

@Tara: Don't let anyone talk you out of what you know! EVEN THE DOCTOR! I've heard from people who have gone to their pediatrician and been told that nothing is wrong and they will grow out of it. But they will not! Go above him and make yourself an appointment with an opthamologist but keep going until you get help. Don't give up or give in to pressure. Good Luck.

palmer82 said...
This comment has been removed by the author.
palmer82 said...

My little is having this surgery done in March she will be 8months old and I was wondering if maybe you can maybe tell me what to expect or some input on it because I find myself 2nd guessing having the surgery done.

Tiffany said...

@Palmer:If you go back farther in the blog, you'll find very detailed description of Danny's first surgery. If you little one is having trouble seeing, know that this is the best thing you can do for her. The whole process is very simple, the recovery is a breeze. The only hard part is right when they take your child away and seeing them right after surgery.

jiftie said...

Thank you so much for writing about your experience.
My daughter (who is currently 7weeks) was diagnosed when she was about 3weeks old. As someone said in a previous post, I had neither heard nor seen this before. It's been quite hard dealing with it. I hate it when people ask me what's wrong with her eye? The hardest part is explaining to them that it's not her eye but it's the eyelid...I don't think they get it anyway.
Sometimes I wonder if it was something that happened during the pregnancy to cause it. And that's the issue - there's very little information about it on the internet.
My daughter's doctor wants to see her again when she's 2months. So far, they recommend eye patching but I don't see it doing much.
When did you decide to have the surgery done? And did you say they had to perform the surgery a second time on Danny? I was a little confused there so if you can please clarify, it'll help me a lot. I'm hoping that once we decide to have the surgery, it will be a one-time thing.
Again, thanks for writing about your experience.

Gifty

Tiffany said...

@Gifty-We had his first surgery when he was 3 months. He did have to have the surgery twice (2 yrs later) because the sling had relaxed too much and would soon be affecting his vision. If we would have waited until he was older we probably wouldn't have had to do it again so soon, but then his vision development would have been impaired. The surgery is very simple, too, so it wasn't a big deal to do it again. And he will have to have it again when he is bigger because they do a surgery where they take a tendon from their leg and use that instead of a silicone sling. I hope that clairfied things for you. If you have any other questions please ask. And good luck!

Tasneem Enbaya said...

Hi, my name is Taz, I'm fifteen and im getting my Bilateral Frontalis sling surgery may 13, i'm VERRRRRY nervous and i just wanted to know when do the bruises disappear, do they? did you watch the surgery? i'm doing both eyes and i'm actually mentally allergic to pain so i just want to know whats it like and stuff.. Keep in touch.

Tiffany said...

@Taz-Sorry it's taken me so long to reply. I didn't watch the surgery but the after affects were very minimal. After about a week any swelling or bruising was gone. Good luck! My son didn't seem to be in much pain at all.

Melissa said...

Tiffany,
I want to thank you for sharing your story and am happy to hear your little one is doing well. My son who is 14 months old is having silicone sling surgery on both eyes July 5th. Reading you blog has reassured me that I'm doing the right thing and I feel much more knowledgable. There isn't a lof of info out there about ptosis and you've helped many parents. Thank you!
Melissa