Guest guest Posted April 22, 2005 Report Share Posted April 22, 2005 Hi Charlotte, My 6 year old daughter has had 4 surgeries now, and just had her left frontalis sling re-done a couple of months ago. As far as how he'll handle the post-op feeling of his eyes, I have been surprised at how little it affects and how quickly it heals. Really, she does not complain about pain, just seems to go right on as if nothing has happened (after recovering from the anesthetic, which is tough for her). I see that Nils will be having his surgery soon, and then Ebba...hope it goes well. And let me know, but I'll bet you'll be surprised how much he just goes on as usual! Best wishes! Dawn From: april Eisele <aprileisele@...> Reply-blepharophimosis Date: Thu, 21 Apr 2005 00:25:22 -0700 (PDT) blepharophimosis Subject: Re: blepharophimosis Charlotte... Hi Charlotte, We live in Colorado, USA, and are adopting a little boy from S. Korea who has blepharophimosis. He just turned 3 yrs old last week. He has his first surgery on February 23rd and from what I can tell of the interpreted medical report he had a Y-V medial canthoplasty and frontalis sling with silicone rod. I have not received post-op pictures yet. We are hoping to travel very soon (before the end of April would be wonderful, but it might go into May). As soon as he is home I will be able to share photos and information about his surgery. I have been in touch with a specialist here in the U.S. who looked at pre-op pictures of Micah and reviewed his surgery report for me and he felt all care thus far was appropriate. (He also said he thinks Micah has a very mild case.) Anyway, I am sorry I cannot offer more help right now - but hopefully soon I can tell you all about Micah. April Eisele, Colorado, USA Wife to Jon Mommy to three little blessings from Korea: Mira(4), Micah(3)- waiting to come home, Misha (2) --- Charlotte Nordstrom <charnordstrom@...> wrote: > > Hi, > thank you for responding to our email. It would be > great > to meet sometime. i hope someone else who has had > silicone slings will respond, i am so worried about > these > surgeries, the unknown is hard. > Nils would love to meet your daughter, he is 5 too. > > take care and thanks > charlotte nordstrom > > > > 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 > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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