Re: surgical procedure for ptosis

[Guest guest]

Hi Kim,

My daughter sees a craniofacial surgeon, Dr. ph Gruss in Seattle, Washington. He has been the primary surgeon since she needed correction for the telecanthis and epicanthis inversis besides just the ptosis. She has also had a pediatric opthamologist since birth to watch her eyesight closely, and we did patch one eye for a couple of hours per day for her two years so that she would continue to use the eye with the lid that didn't open very much at birth. And she has an ocularplastic surgeon also who has done the ptosis repair. Our craniofacial surgeon does not do that procedure.

We were first referred to an ocularplastic surgeon; however, we weren't wild about our appointment, and after we met with the geneticist, she referred us to Dr. Gruss. We also had a very good appointment with an ocularplastic surgeon in Oregon who does the entire treatment for BPES himself -- the correction for telecanthis, epicanthis inversis, and ptosis. He said he occasionally refers to a craniofacial surgeon when bone malformation is involved.

Also, as far as the slings go, 's surgeon, Sires, used donated fascia (material from the leg) instead of silicon. It seems there are pros and cons to both, and some surgeons prefer fascia and others prefer silicon. I'm not sure if fascia can be used on a young one; didn't need to have surgery until she was older (4) because her eyes opened enough.

You'll have to write back after your appointment with the craniofacial surgeon and let us know how it went, if Dr. Segal will have you work with an ocularplastic surgeon for the ptosis aspect of the surgery or not. Our two surgeons have performed two of the surgeries together in order to avoid an additional anesthesia for .

Good luck! Dawn

From: " kim_smith_daniel " <kimsdaniel@...>

Reply-blepharophimosis

Date: Sat, 29 Jan 2005 04:38:43 -0000

blepharophimosis

Subject: blepharophimosis surgical procedure for ptosis

Hello group:

My 5 month old son was diagnosed with BPES last week. We are certain

that he would have been diagnosed at birth if we had had access to a

geneticist earlier (had to wait 4 months to get in to see Dr.

at Shands in Gainesville, FL).

We are anxiously awaiting our surgical consult with Dr. Segal, a

craniofacial surgeon at Shands, to determine if he is the right

surgeon for the job. We are told our son needs surgery for the

ptosis soon because his right eye doesn't not open very much. His

vision seems to be good in both eyes.

Two questions: I've read through most of the e-mails for information

gathering purposes. I noted that when someone did refer to surgery

for ptosis the procedure was commonly referred to as placement

of " silicone slings " . Is this THE procedure for ptosis as in " the

one and only " option? I'd like to research this procedure before our

surgical consult if necessary.

Also, we have been referred to a cranio-facial surgeon rather than a

ocuplastic surgeon. I didn't see any references to a cranio-facial

surgeon on the web-site? Perhaps the cranio-facial surgeon is

involved if there are no issues with vision???? Any thoughts?

Thanks for sharing your knowledge, opinions, etc.

[Guest guest]

Thanks for sharing your story with me. I'm coming to the conclusion that everyone has a different story with any combination of surgeons and surgeries and at varying ages. Another conclusion: get a second opinion at the very least! I'll continue to do my homework and let you know how the appointment goes.

Thanks,

Kim

-------------- Original message -------------- Hi Kim,My daughter sees a craniofacial surgeon, Dr. ph Gruss in Seattle, Washington. He has been the primary surgeon since she needed correction for the telecanthis and epicanthis inversis besides just the ptosis. She has also had a pediatric opthamologist since birth to watch her eyesight closely, and we did patch one eye for a couple of hours per day for her two years so that she would continue to use the eye with the lid that didn't open very much at birth. And she has an ocularplastic surgeon also who has done the ptosis repair. Our craniofacial surgeon does not do that procedure. We were first referred to an ocularplastic surgeon; however, we weren't wild about our appointment, and after we met with the geneticist, she referred us to Dr. Gruss. We also had a very good appointment with an ocularplastic surgeon in Oregon who does the entire treatment for BPES himself -- the correction for telecanthis, epicanthis inversis, and ptosis. He said he occasionally refers to a craniofacial surgeon when bone malformation is involved. Also, as far as the slings go, 's surgeon, Sires, used donated fascia (material from the leg) instead of silicon. It seems there are pros and cons to both, and some surgeons prefer fascia and others prefer silicon. I'm not sure if fascia can be used on a young one; didn't need to have surgery until she was older (4) because her eyes opened enough.You'll have to write back after your appointment with the craniofacial surgeon and let us know how it went, if Dr. Segal will have you work with an ocularplastic surgeon for the ptosis aspect of the surgery or not. Our two surgeons have performed two of the surgeries together in order to avoid an additional anesthesia for . Good luck! Dawn

From: "kim_smith_daniel" <kimsdaniel@...>Reply-blepharophimosis Date: Sat, 29 Jan 2005 04:38:43 -0000blepharophimosis Subject: blepharophimosis surgical procedure for ptosis

Hello group:My 5 month old son was diagnosed with BPES last week. We are certain that he would have been diagnosed at birth if we had had access to a geneticist earlier (had to wait 4 months to get in to see Dr. at Shands in Gainesville, FL).We are anxiously awaiting our surgical consult with Dr. Segal, a craniofacial surgeon at Shands, to determine if he is the right surgeon for the job. We are told our son needs surgery for the ptosis soon because his right eye doesn't not open very much. His vision seems to be good in both eyes.Two questions: I've read through most of the e-mails for information gathering purposes. I noted that when someone did refer to surgery for ptosis the procedure was commonly referred to as placement of "silicone slings". Is this THE procedure for ptosis as in "the one and only" option? I'd like to research this procedure before our surgical consult if necessary. Also, we have been referred to a cranio-facial surgeon rather than a ocuplastic surgeon. I didn't see any references to a cranio-facial surgeon on the web-site? Perhaps the cranio-facial surgeon is involved if there are no issues with vision???? Any thoughts?Thanks for sharing your knowledge, opinions, etc.