has anyone recieved the wiring that pulls the eyes together? my son has blepharophimosis and they recomend it for cosmetic reasons. i’m not sure how i feel about it and was wanting more info about it and also wanting to see before and after pictures.
i think a few people in the main BPES group has had this done and also have pictures posted
Hi,
We’ve been recommended the same procedure for our one year old son. He
has something called telecanthus (sp?) which essential means the bridge
of his nose is quite flat, and that his eyes are either further apart,
or appear further apart than normal. In our case we’ve had therefore had
four procedures recommended:
- Wiring to create a bridge of his nose and brings eyes closer
- Plastic surgery on the epicanthus inversus (remove lower eye skin
folds) - Brow lift/silastic clings or facsia to raise eyelids (make eyes
appear wider & increase field of vision) - Another procedure to lengthen his eyes ie involving (I think)
inverting the outside corners to make his eyes longer (increae field of
vision exp peripheral and improve appearance)
The wiring really makes sense in his case because is his very flat in
the upper face where most of us have a pronounced nasal bridge. It makes
our son look very Chinese (super cute) but quite unlike most Caucasions.
CC
-----Original Message-----
From: ranella [mailto:blepharophimosis-cpt8709@lists.careplace.com]
Sent: Wednesday, 23 April 2008 4:29 AM
To:
Subject: [blepharophimosis] wiring
I have a 17 year old son that had the wiring done when he was 4. He has no issues to this day. I am glad I had it done.
----- Original Message ----
From: cc13 blepharophimosis-cpt8709@lists.careplace.com
To: ssimtenaj@yahoo.com
Sent: Tuesday, April 22, 2008 9:56:24 PM
Subject: Re: [blepharophimosis] wiring
Hi
This subject has been discussed a few times in the Yahoo group. I asked a
doctor at Moorfields Eye Hospital to provide some information for us, and I
have copied this below.
It is realty important to recognise that each of us are different, and the
set of circumstances relating to each person is what leads the ocularplastic
surgeon to recommend options to parents. Hearing of other people’s
experiences can be informative and comforting, but it really should not
influence a decision on treatment, espcieally if a specific treatment is
either recommended or not recommended by you healthcare professional team.
If anyone is in doubt, they are best placed to talk to another expert in
ocularplastic surgery of people with BPES.
I hope it helps you.
Regards
Shireen
London, England
Thomas Hardy is a doctor who used to work at Moorfields Eye Hospital in
London, England.
From: Thomas Hardy, Sent: 12 March 2006 11:36 Dear Shireen, Thankyou for the email. Regarding trans-nasal wiring: This procedure is done when the space between the inner angles of the eyes (which is widened in BPES, and is called telecanthus) is too large to be corrected by operating on the soft tissues in this area alone, especially the tendon which connects the inner angles of the eyes to the bone on the side of the nose. The wire is passed through
/
around said tendons and then passed through the nasal cavity to the other
side, where it is connected to the opposite tendon in a similar fashion.
The wire is tightened and effectively brings the inner angles of the eye on
each side closer together. The outcome can be a little unpredictable in
some
cases.Not many people have had it done as it doesn’t need to be done too
often, as the distance between the inner angles of the eyes is usually not
so great, but it certainly is done and has been done on BPES patients
treated at Moorfields (and elsewhere, of course!). I’m afraid I can’t
easily find an image of the procedure to send you, mainly because of
copyright rules, but you could find it in a text book of oculoplastic
surgery if necessary.You are absolutely right not to try to give medical advice - it can be a
complicated area, so others are best referred to their own doctor +/- an
oculoplastic or plastic surgeon.Thomas Hardy
i am glad to here that your son has never had any problems. y mmain concern is that the procedure could cause pain or infections where it would be done. my son’s eye specialist says that it is mainly cosmetic, but the orbitaligist/plastic surgeon recommends this. i feel realy torn on the subject. i don’t want to risk more discomfort and surgey, but i also wonder if he would later be glad that i did. i really would like to see before and after pics to see how much of a difference it would make. thankyou for the advice that you all gave it is very helpful.-ranella
Ranella -
I am 26 and have had three sling surgeries and my Mom sought out the best
medical advice for my condition in the 80s that she could find. I am so
happy that she proceeded with my first surgery, it made my life so much
better, vision and normalcy wise. I have had two more surgeries - one when I
was 16 and the other when I was 22 and both of them were intiated by me and
the medical proceedure and recovery time just gets easier and faster as
medical technology advances. You most likely have nothing to worry about
with your Son. I’m very pleased with my results. BPES is something that has
never slowed me down in my life but I think that surgeries helped build my
confidence and understand that I am not any different than anyone else.
hope that helps.
jamie
On Thu, Apr 24, 2008 at 10:37 AM, ranella <
blepharophimosis-cpt8709@lists.careplace.com> wrote:
Ruthies Doctor wanted us to think about having the wiring done. We had a meeting with her doctor and the plastic surgeon who would perform the wiring and the surgeon said she didn’t want to do the wiring on Ruthies nose.(I think it hasdf something to do with not wanting to drill through the bridge of her nose to do wiring) The surgeon said the rest of the surgery would only make about a 25 percent difference in Ruthies appearance.Then there were concerns about the muscle in her eyes. We had decided that if the patching didn’t work and she needed to have the muscles operated on we would have the other surgery too because it would have been done at the same time. But two months of patching worked so she doesn"t need the eye muscles operated on at this time. Yeah!!! So now we are back to having to decide about the other surgery. Where it is basically for cosmetic reasons at this time I also don’t know what to do. Is it worth putting her through the surgery for a 25% difference? I just dont know. I have had people tell me 25% is at least 25%. Its so hard to make these decisions. Ruthies doctor told us that the surgery is something we can have done at anytime. She starts pre-school int he fall so we decided to see how the othewr children react to her. We go for follow up checkups every 6 months so we will see what the next visit brings. Jill
We seem to have very similar situations, Jill. Our daughter Rian is in preschool this year - she is 3 1/2. We always assumed that we would have the wiring surgery done before she started kindergarten. (She had the silastic sling surgery at 11 months.) When we recently saw our surgeon (Dr. Andrew Harrison - University of Minnesota) he said he rather wait until she was 12 or 13. He said it would be much more successful and worthwhile at that age. Kids rarely make comments about Rian’s eyes. I feel like she has no idea that her eyes are different. I guess if we wait until 12 or 13, Rian can help make the decision…
Best of luck!
Stacy> To: ralidak@hotmail.com> From: blepharophimosis-cpt8709@lists.careplace.com> Subject: Re: [blepharophimosis] wiring> Date: Fri, 2 May 2008 23:41:29 -0400> >
my son’s orbitalogist/plastic surgeon recommends we do the wiring at age 5, which zeke is now. but the eye specialist says that it is’nt necesary. it is so hard when two specialist disagree, how do i know which one is right?