Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 I just looked at Lily's photo after surgery-WOW! Can you send me a picture of Lily before her surgery. I know that I have looked at pictures before but cannpt exactly remember. You are located in Northern Virgina right? Who performed Lily's surgery? I live in Kentucky and am not satisfied with the surgen here. He recommeded we wait until Hannah is 4 or 5 for surgery. I would like a second opinion. Lily and Hannah are the same age. I just posted a new picture of her. I will e-mail you seperately. Talk to you soon. Angie > > I posted a picture of Lily, 2 months after her ptosis surgery with > silicon rods. She is 8 months old. > > She saw the surgeon yesterday, he said he thought she would only need > a little bit of surgery in the epicanthus around age 3 and ptosis > repair with fascia lata at age 4. So far we are pleased. I think her > vision is improving, a she can now use it more! > > I think it would be helpful if we composed a list of surgeons we would > recommend and their locations. > > Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 Lily looks great! Also wanted to let you know that I've been trying to reply to your offline email, but something is up with hotmail. I'll try again tomorrow. Joy > > I posted a picture of Lily, 2 months after her ptosis surgery with > silicon rods. She is 8 months old. > > She saw the surgeon yesterday, he said he thought she would only need > a little bit of surgery in the epicanthus around age 3 and ptosis > repair with fascia lata at age 4. So far we are pleased. I think her > vision is improving, a she can now use it more! > > I think it would be helpful if we composed a list of surgeons we would > recommend and their locations. > > Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2005 Report Share Posted March 30, 2005 Thank you for the compliments, it means alot. We think she looks great. And she is such a joy. She couldn't open her eyes at all, she looked like she was sleeping. Our surgeon is Dr. Gavaris in DC, operates at town and Children's Hospitals in DC. He does also have an office in Northern VA. Truthfully, I don't like many doctors, even the talented ones, I just have a hard time liking anyone that pokes at her, gives her shots. makes her cry, etc., HOWEVER I LOVE Dr. Gavaris. He is a good person. I really believe that he cares about Lily and my family. And he is a skilled Oculoplastics Surgeon. Beth > > > > I posted a picture of Lily, 2 months after her ptosis surgery with > > silicon rods. She is 8 months old. > > > > She saw the surgeon yesterday, he said he thought she would only > need > > a little bit of surgery in the epicanthus around age 3 and ptosis > > repair with fascia lata at age 4. So far we are pleased. I think > her > > vision is improving, a she can now use it more! > > > > I think it would be helpful if we composed a list of surgeons we > would > > recommend and their locations. > > > > Beth Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 Hi BethThe database we have built up on the BPES site has a question asking people to list the surgery information. I would really like to encourage people to use that place to put information. It is one of those resources where the more people put in, the more they get out of it.Right now, there are 63 entries in the database. "Thank you" to all the people who have taken the trouble to put information in it.You point about "who do we recommend" - it is an interesting one. Our group isn't a "formal support group" of any type. But I know that some support groups try not to endorse specific medical treatments, especially if the symptoms and conditions for each patient can be so different.I am quoting this from the BPES Family Support Group site: (this is for your information)The BPES Family Network encourages you to share your experiences, suggestions or questions with regard to treatment options or information about BPES. This exchange is beneficial as part of our on-going education process and assessment of information about blepharophimosis.But we discourage endorsing any particular treatment options. We feel that it is important to facilitate this exchange of information as support for one another, and to consult your medical specialists for their professional recommendations.I think that the point I am trying to make is that sharing all information and experience is good, but that it should not get in the way of the medical specialist being consulted and given extensive listening time. Nowadays there is so much more information available, and techniques have improved enormously. When people ask me about my operations, I say that it is irrelevant - I am 44 years now, and there is no way that the same techniques would be used. So therefore, no point asking me, ask Mr Collin at Moorfields instead (or indeed, any of the brilliant doctors who have made all those children look wonderful). About 2 months ago I answered a question re BPES from somebody ... they had sent me an email directly. I thought I knew what I was talking about. It turns out that I was wrong, and I felt really really bad. I had misled somebody, and built up their hopes needlessly. Yes, my intentions were good. But I felt that I, along with others, should be so so careful. Take care, Shireen > blepharophimosis a picture of Lily>>>> I posted a picture of Lily, 2 months after her ptosis surgery> with silicon rods. She is 8 months old.>> She saw the surgeon yesterday, he said he thought she would> only need a little bit of surgery in the epicanthus around> age 3 and ptosis repair with fascia lata at age 4. So far we> are pleased. I think her vision is improving, a she can now> use it more!>> I think it would be helpful if we composed a list of surgeons> we would recommend and their locations.>> Beth>>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2005 Report Share Posted March 31, 2005 Good points, Shireen. I have looked at the database and had sort of forgotten about it. Just to be clear, I am not trying to endorse any treatments or any doctors, I just have often wondered if there are other families in my area and or if there are other doctors I haven't heard of. I just want to make sure we have explored every option before we make decisions and I am sure others in this group feel the same. Everyone (especially me, because my daughter got an infection her first surgery) should practice caution. I should have communicated that in my post, sorry. > Hi Beth > > The database we have built up on the BPES site has a question asking people > to list the surgery information. I would really like to encourage people to > use that place to put information. It is one of those resources where the > more people put in, the more they get out of it. > > Right now, there are 63 entries in the database. " Thank you " to all the > people who have taken the trouble to put information in it. > > You point about " who do we recommend " - it is an interesting one. Our group > isn't a " formal support group " of any type. But I know that some support > groups try not to endorse specific medical treatments, especially if the > symptoms and conditions for each patient can be so different. > > I am quoting this from the BPES Family Support Group site: (this is for your > information) > > The BPES Family Network encourages you to share your experiences, > suggestions or questions with regard to treatment options or information > about BPES. This exchange is beneficial as part of our on-going education > process and assessment of information about blepharophimosis. > > But we discourage endorsing any particular treatment options. We feel that > it is important to facilitate this exchange of information as support for > one another, and to consult your medical specialists for their professional > recommendations. > > > I think that the point I am trying to make is that sharing all information > and experience is good, but that it should not get in the way of the medical > specialist being consulted and given extensive listening time. > > Nowadays there is so much more information available, and techniques have > improved enormously. When people ask me about my operations, I say that it > is irrelevant - I am 44 years now, and there is no way that the same > techniques would be used. So therefore, no point asking me, ask Mr Collin at > Moorfields instead (or indeed, any of the brilliant doctors who have made > all those children look wonderful). > > About 2 months ago I answered a question re BPES from somebody ... they had > sent me an email directly. I thought I knew what I was talking about. It > turns out that I was wrong, and I felt really really bad. I had misled > somebody, and built up their hopes needlessly. Yes, my intentions were good. > But I felt that I, along with others, should be so so careful. > > Take care, Shireen > > > > > > blepharophimosis a picture of Lily > > > > > > > > I posted a picture of Lily, 2 months after her ptosis surgery > > with silicon rods. She is 8 months old. > > > > She saw the surgeon yesterday, he said he thought she would > > only need a little bit of surgery in the epicanthus around > > age 3 and ptosis repair with fascia lata at age 4. So far we > > are pleased. I think her vision is improving, a she can now > > use it more! > > > > I think it would be helpful if we composed a list of surgeons > > we would recommend and their locations. > > > > Beth > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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