Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Hi Pam and Welcome to the group. I am very pleased to hear that you have found somebody that you feel is a good surgeon. You did not mention why any of the 4 people you saw did not show you a "portfolio". Perhaps you could let us know. I don't know either, but I expect that because the range of severity of the symptoms is so different, no 2 people are alike. Perhaps they did not want to mislead you. I have met (in person) about 20 different people with BPES, and I can assure you that no 2 people look the same. Even a mother and daughter, both of whom have BPES, and both operated by the same person, don't look the same. I am sure that by looking at the photos in the site, and by looking in the database, you will be able to see what can be accomplished. You may find it useful to look here: http://freespace.virgin.net/andy.bowles/page6.html there are some shortcuts to articles about surgery. Generally speaking, and I know it may not sound very helpful at first, we tend not to hold polls for "who is the best". Rather, people describe their circumstances, explain the issues, and then chronicle what happens to them (or their kids). Many of the photos on the site are pre and post op, and we can thank all the people who go to the trouble to put the photos on the site. I am also a member of the BPES family network. And here is a quote from the web site: 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. If I can help you in any way, please don't hesitate to ask. Take care, Shireen, (in London, England) From: pampaulobrien [mailto:obriengroup@...] Sent: 05 January 2005 02:12blepharophimosis Subject: blepharophimosis WHO IS THE BEST We are new to your site, our daughter has BPES. Her Ped Op is Dr. Campolatarro in NYC. For the surgery we visited Dr. Millman (NYC), Dr. Katowitz (Philly), A top surgeon in London and Dr. in Utah. Sad to say every doctor we saw told us the process they would take but none of them had a before and after portfolio. WE ALL NEED TO SEE THIS. In any case, we settled on . This will be my daughters third surgery. He is great and we are happy with the results. Is he the best? I don't know. Does anyone know who is the best. I wish this network exhisted before we started our search. It was a very scary process. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Hello Pam and You are the first family I have seen from NYC. Welcome. My son Aedan has Bleph. Dr. C. is our opthalmologist as well. For surgery we went to Millman and Mayer from NY eye and ear. We went with Dr. Mayer and are very satisfied with her results. We have only been through one ptosis surgery at 10 weeks. Aedan is now 2 1/2. We live in the village. I am so pleased you found this group and you live nearby. How old is your daughter? Is she in school? Aedan has an older sister 7 years old. She goes to PS 3 . Aedan just started at a pre school on 14th st. I hope that we get to communicate. I am so happy to finally almost meet a family nearby. Our personal e-mail is Rainamint@aol Feel free to write there or here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2005 Report Share Posted January 5, 2005 Unfortunately we have moved from NYC to upstate New York. My husband works in the city still though. We will use the doctors upstate and the ones in NY. Dr. C. has quite a few patients w/ BPES so I think you are in good hands. He hooked us up with another family in New York to talk a few years back too. We were so devastated and what happened was so new to us that he organized a meeting. You should ask him to do the same for you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Can anyone tell me how we can find out what type of BPES our daughter has? Is there a geneticist that is currently testing this? And which type of BPES would mean our daughter can have children? And which type means that she will not pass on BPES to her children? We send our blood in to Dr. Kent Small at UCLA three years ago but he is not giving feedback on individual cases. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2005 Report Share Posted January 6, 2005 Hi take a look here: http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html The doctor who wrote this article can provide testing for you. Any person with BPES who can have children, has a 50% chance of passing it on. You may also find this informative: http://freespace.virgin.net/andy.bowles/page3.html Shireen From: obriengroup@... [mailto:obriengroup@...] Sent: 06 January 2005 15:02blepharophimosis Subject: Re: blepharophimosis WHO IS THE BEST Can anyone tell me how we can find out what type of BPES our daughter has? Is there a geneticist that is currently testing this? And which type of BPES would mean our daughter can have children? And which type means that she will not pass on BPES to her children? We send our blood in to Dr. Kent Small at UCLA three years ago but he is not giving feedback on individual cases. Quote Link to comment Share on other sites More sharing options...
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