Re: Re: How high to lift the lids??

[Guest guest]

Hi Dawn

In reply to your question about where the slings were attached... they were attached above Evie's eyebrows - she has v.small scars from this which are barely noticeable.

I have finally managed to post a few more photos taken the other day - Evie very kindly posed for me to show how well she can now open her eyes now. As you can see from the photos, the bridge of her nose is still wide so that the whole of her iris is not visible when she looks straight ahead. It has taken me the last two years to persuade my Mother that Evie is not 'cross eyed' (as she puts it) but it can look a bit that way because when Evie looks to the side, her whole iris practically disappears - this does not appear to affect her sight though.

All the best

Shena

blepharophimosis Re: How high to lift the lids??

Thanks so much, everyone, for your input. One more question to Shena and others...did the surgeons attach the sling at the eyebrow and then up to the forehead as well? 's first surgeon was planning to do this. (Rob, the guy seemed pretty great, actually...he had some major medical thing -- cancer? -- that had everyone at Children's acting very somber when his name was brought up.) Our new guy said he doesn't find he needs to attach to the forehead to get enough lift, but then he does many more of these surgeries on adults than on children with congenital ptosis. Since the first wasn't high enough, I'm wondering if it actually IS important to attach to the forehead in these cases.Rob, thanks for your suggestions and encouragement regarding approaching the docs. We discussed her case with 4 surgeons and felt like we had the best option available. Now I'm wishing I would have made sure I had this issue resolved better before her sling surgery. When you're using the docs from your state medical school and children's hospital, it's hard to know where else you could go where they'd have more experience. As her craniofacial surgeon said, "I've probably done about as many of these as anyone has...there's no one who's done a ton of them." (This referring to canthopexies on kids with bleph; 's also had a skin graft to add extra skin to her lower lid. This also will be "repaired" during her January surgery -- when they attached her lower lid to the skin graft, they attached it so her lashed are poking her in the eye and now it's hurting her and affecting her vision. GRRRRRR!!!!)Anyway, I'm guessing many of you have the same difficulty having confidence in any doctor who is messing with your child's sweet face. I saw Joe's email regarding searching for a top surgeon, and not many people emailed back with suggestions which gives me the impression that many of us feel nervous and unsure.Thanks again for your input! Dawn

[Guest guest]

Hi Dawn

We live in Derbyshire in the UK

The surgeon who did Evie's op is Mr Collin at Moorfields Eye Hospital in London. We still go every 6months for a check up to see how things are.

I really understand your concern about the remarks that gets from the other kids and the way that she hates what's happening - Evie used to get asked if she was blind!

As time has gone on we have all got used to handling the comments - Evie has an 16 yr old sister who still gets really angry if people make remarks and has on occasion threatened to go to Evie's school and 'sort out' the offenders - her way of dealing with it I guess. (she doesn't ever carry her threats out by the way as Evie won't allow it and neither would I)

I used to get really upset if I noticed people staring at Evie and also when she was a baby lots of people assumed she had Downs Syndrome. I used to feel very protective of 'my baby' and tried to protect her a lot.

As Evie has got older she has developed her own ways of coping with situations such as name calling ( and we all know how cruel other kids can be!) and I have learned to let her get on with it - she knows that if there is ever a time when she can't handle a situation then she can always come to me and ask for help.

I suppose what I'm trying to say is that yes, it does hurt like hell when your child comes home and tells you that they have been teased/bullied and yes, it hurts like hell when people stare or make comments but we have to teach our precious girls how to handle it themselves as we can't always be there to stick up for them.

I have found that as I've got stronger and less affected by what people say or do then I have been able to be much more effective in my support for Evie.

I am very proud of Evie and the way that she is developing into a well rounded human being with a great sense of humour, bags of confidence and a very loving nature.

I'm sure that as gets older she will develop her own way of dealing with other kids and their silly remarks and she always has you to turn to when the going gets tough.

I hope this helps

love shenax

From: Dawn

blepharophimosis

Sent: Thursday, December 02, 2004 9:59 PM

Subject: blepharophimosis Re: How high to lift the lids??

Shena, I just peeked at your cute pictures of Evie -- thanks so much for posting them. Our girls are close in age, ( is 6), and it looks like they both have beautiful long, reddish-brown hair. Her eyes look great -- I was surprised at how open they were...makes me want to talk more with my doctor regarding his concerns about raising them too high. 's craniofacial doctor who's treated several cases of bleph (he did the canthopexies and the skin graft) said he thought they were too low, but the opthomologist is concerned about damage from too much exposure. He keeps saying that we need to focus on improving her function, which I absolutely agree is most important, and we shouldn't compromise her eyesight. However, I don't think he appreciates how difficult it is to always have to answer "the question" from other kids about why her eyes don't open much. She hates it.The more I talk the more I'm convinced we need another opinion before this surgery. Thanks again! DawnP.S. Who/where is the doctor who did Evie's sling?

[Guest guest]

Hi Shena,

I wanted to write back to thank you regarding your note about Evie and encouragement for . In your later post, it sounds like you went through what we are dealing with right now...we had a surgeon we were comfortable with, he left shortly before 's surgery. Anyway, thank you for your encouragement. I've made an appointment with Dr. Ng at Casey Eye Institute in Oregon USA, so we'll see what this third opinion yields about how high is safe to raise the lids. I'm just not feeling good about the surgeon we have who has to re-do the ptosis repair because it's still blocking her pupil. Since this is her fourth surgery, I really want them to get it right!! I know it's delicate, but this shouldn't have to be a continuous process for her, surgery year after year!! (Can you tell I'm getting a little mad about the whole deal? I'm sure they are doing their best, but when they told me she'd need another one, I tell you -- I'm feeling a little like a mother bear about the whole thing.)

Thanks again for your encouragement! -- Dawn