BPES family w/surgery questions

[Guest guest]

Hello. We are new to the group. We have been reading the messages

for a month or so, thanks for all the info! We are a family in

Minnesota with two children with BPES, Nils-5 yrs old and

Ebba-6 months old. I, my sister, father, grandfather and

greatgrandmother also have/had it.

Nils had sling surgery using prolene at 4 months old. He is now not

able to open his left eye as much as his right and will soon (end of

April) have another sling surgery on both eyes using silicone in a

sleeve. (Is that the same as silicone rods?)

His first surgery used the technique with two cuts just above the

eyebrows and two on the lids. This surgery will be only one cut

just above the middle of the eyebrow and cuts on the under side

of the lids. " Transconjunctival Frontalis Sling " the Dr. called it.

Ebba will also have her first sling surgery a week later.

Dr. on at the Univ of MN will do the surgeries.

He learned this technique at his fellowship at Oregon Health

Sciences University in Portland.

Does this sound like anyone else's surgery? What did you think of

the results? Does the surgery create eye creases? What about the

shapeof the eye compared to other materials or techniques?

I am a little worried how Nils, the 5 year old, will react to how his

eyes look and feel right after the surgery, any ideas on how to

prepare him or deal with his reaction from parents who have

gone through it?

My sister and I were the first in the family to have surgeries on our

eyes. Slings at age 6/8 and medial canthoplasty at age 8/10. A

regular plastic surgeon, the only one in Fargo, North Dakota in

1972, Dr. Lamb, did it and did a great job. He used our own

facia lata from leg. I don't remember so much and we have no

pictures of us right after the surgeries.

Also, is anyone out there from MN (or even WI or ND or SD)? I would

so love to talk or meet with another family.

Thank you for any help, information, comments, ideas...

Charlotte Nordstrom

[Guest guest]

HI!! Charlotte,

We live in East Central Iowa near Davenport and our daughter is 5. She

is the first one in our family to have BPES and has not had any

surgeries yet. I think her case is a mild one. There is also another

family in Iowa City with an older daughter. If you are ever in our part

of the state, please email me-we'd love to meet you, it would be fun to

let the kids see each other, too. , our daughter, understands

that her eyes are shaped differently, but so far no teasing from other

kids. She is not in school yet and her glasses magnify her eyes which

helps them appear larger. We meet with our surgeon every year (appt in

a couple of weeks actually) and he keeps saying she can wait. I hope you

get some answers from someone else in this group on your specific

questions.

Sincerely,

Sheila Mathias

Durant, Iowa

563-785-6706

blepharophimosis BPES family w/surgery questions

Hello. We are new to the group. We have been reading the messages

for a month or so, thanks for all the info! We are a family in

Minnesota with two children with BPES, Nils-5 yrs old and

Ebba-6 months old. I, my sister, father, grandfather and

greatgrandmother also have/had it.

Nils had sling surgery using prolene at 4 months old. He is now not

able to open his left eye as much as his right and will soon (end of

April) have another sling surgery on both eyes using silicone in a

sleeve. (Is that the same as silicone rods?)

His first surgery used the technique with two cuts just above the

eyebrows and two on the lids. This surgery will be only one cut

just above the middle of the eyebrow and cuts on the under side

of the lids. " Transconjunctival Frontalis Sling " the Dr. called it.

Ebba will also have her first sling surgery a week later.

Dr. on at the Univ of MN will do the surgeries.

He learned this technique at his fellowship at Oregon Health

Sciences University in Portland.

Does this sound like anyone else's surgery? What did you think of

the results? Does the surgery create eye creases? What about the

shapeof the eye compared to other materials or techniques?

I am a little worried how Nils, the 5 year old, will react to how his

eyes look and feel right after the surgery, any ideas on how to

prepare him or deal with his reaction from parents who have

gone through it?

My sister and I were the first in the family to have surgeries on our

eyes. Slings at age 6/8 and medial canthoplasty at age 8/10. A

regular plastic surgeon, the only one in Fargo, North Dakota in

1972, Dr. Lamb, did it and did a great job. He used our own

facia lata from leg. I don't remember so much and we have no

pictures of us right after the surgeries.

Also, is anyone out there from MN (or even WI or ND or SD)? I would

so love to talk or meet with another family.

Thank you for any help, information, comments, ideas...

Charlotte Nordstrom