Guest guest Posted August 27, 2005 Report Share Posted August 27, 2005 Hi Shireen, thank you very much indeed for your infos and your support. We fixed for the 8th of December a visit with Mr and we will see. Do you know how many surgery like this he have done ? Have you had any experience with this hospital/doctor ? What will be a little bit difficult will be to manage the post surgery time between Milan and London (and we have to check also the costs of this). If you will come any time to Milan let us know ! Ciao, Francesco -----Messaggio originale----- Da: blepharophimosis [mailto:blepharophimosis ] Per conto di Andy Bowles & Shireen Mohandes Inviato: giovedì 25 agosto 2005 8.44 A: blepharophimosis Oggetto: RE: blepharophimosis Help please Hello Francesco The best person you can see in London is called: Mr Collin (in the UK, surgeons are called " Mr " ) Their email is broken, so please phone or fax. His secretary is called If you were to phone now - you would get an appointment for December or possibly January, I don't now but I am estimating this based on what people have told me. That is how long the waiting list is. An initial consultation costs 150 uk pounds The contact numbers are: You need to start with +44 - 20 then ... Phone - 7486 2699 ... Fax - 7486 8626 He also works at Moorfields Eye Hospital http://www.moorfields.org.uk/PrivatePatients/copy_of_Consultants Regarding advice - the best thing you can to is to talk to Mr Collin. May I suggest that you ask him if he has worked with a doctor near you in Milan. This way you may be able to see somebody more quickly. I have met more than 30 people with BPES. Almost everyone is different. As years go by surgery techniques get better, people know more. You may find this article interesting: http://www.emedicine.com/ent/topic97.htm It is a detailed article on surgery - written by what appears to be a group of very reputable people. Also, you may find this useful http://www.geneclinics.org/servlet/access?db=geneclinics & site=gt & id=8888891 & key=yvyThuThGZXK5 & gry= & fcn=y & fw=suti & filename=/profiles/bpes/index.html I hope that this helps. Ciao Shireen London, England > blepharophimosis Help please > > Dear all of you, > > I'm the father of a 20 mounths years old called Caterina. > She has the bleptarophimosis but any of our relatives are > affected so it was a shock for us !!! > We live in Milan (Italy). > > She had a first surgery 6 mounths ago for the ephicantus > inversus and now 3 different doctors told us that in about 1 > year we have to effort a second step for the elevator muscle > suspension. > > Our fear is referred to how to choise the best doctor on this > relativelt rare operation. > > I saw that some of you are fron England. Do you have for > exeample in London a good doctor to suggest us ? Someone that > did a lot of this surgery ? > > On the books some doctor told that is better to do this > surgery with a partial anesthesia in order to permit to fix > in the proper way the lenght of the silicon (or other > material) " belt " in order to avoid to have eyes partially > open everytime. Any expeience on that fact ? > > We really appreciate your help. Is quite better to know that > other people are in the same boat of us. It seems that we are > the only one in Milan with this problem (on a total of 2 > million people !!) > > Best regards from Francesco, Olga and for sure Caterina > > > > > > Quote Link to comment Share on other sites More sharing options...
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