Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 My daughter had this done when she was 6 years. The recovery was quicker than the sling operation which she recently had. The results were not encouraging for us as the distance between her eyes were the same and she had some noticeable scarring. I have pictures of her on the site under Mayowa and Tina. I must stress though that the doctors we saw then were not experienced and the results could be down to their inexperience. They had no prior knowledge of this condition or how it is treated. We are now under the care of specialist in Moorfields Eye hospital in London. They too agree that the 1st operation she had was a failure. This is not meant to discourage you. I would ask to see photos of people that have had it. Wishing you all the best. Joyce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2006 Report Share Posted March 12, 2006 Hi I have tried to obtain some material that may be of use to you. I contacted a doctor who is running a research project on BPES at Moorfields Eye hospital in London. Here is the information he sent to me, please see below. It is good that we are able to ask fellow group members about information. The main thing to understand is that the only persons able to supply medical advice are, as Dr Hardy says, a doctor and an ocularplastic surgeon. When I write to the various specialists, I always tell them that our group tries to help obtain information about experiences, build friendships & provide support. And that the group, in general, does not seek medical advice from others members of the group about treatment options or endorsements. Our group is lucky enough to have a few doctors as members. In addition, some of our members are in the healthcare profession and are able to respond to questions concerning their area of expertise. Much of what we face is bewildering. Please keep the questions coming. The more information we can obtain and share, the better. Regards Shireen Mohandes London, England (I am 45 yrs old, and the only person in my family with BPES) ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ From: Hardy Sent: 12 March 2006 11:36 andy.bowles@... Subject: Re: a questions for you Dear Shireen, Thankyou for the email. I am back in Australia now, but still in touch with the project. The bloods are being analysed, and I hope we will have some results at some stage in the next month or so. It all takes a bit of time, as you can imagine, as it is not urgent research. Regarding trans-nasal wiring: This procedure is done when the space between the inner angles of the eyes (which is widened in BPES, and is called telecanthus) is too large to be corrected by operating on the soft tissues in this area alone, especially the tendon which connects the inner angles of the eyes to the bone on the side of the nose. The wire is passed through / around said tendons and then passed through the nasal cavity to the other side, where it is connected to the opposite tendon in a similar fashion. The wire is tightened and effectively brings the inner angles of the eye on each side closer together. The outcome can be a little unpredictable in some cases. Not that many people have had it done as it doesn't need to be done too often, as the distance between the inner angles of the eyes is usually not so great, but it certainly is done and has been done on BPES patients treated at Moorfields (and elsewhere, of course!). I'm afraid I can't easily find an image of the procedure to send you, mainly because of copyright rules, but you could find it in a text book of oculoplastic surgery if necessary. You are absolutely right not to try to give medical advice - it can be a complicated area, so others are best referred to their own doctor +/- an oculoplastic or plastic surgeon. Please feel free to keep in touch, especially to find out how the research is going. Kind regards, Hardy > blepharophimosis Hi, new member > > I have a 6 year old son who in December of 2003, he was 4 at > the time, had the sling operation done. The > Doctor/Specialist inserted a silicone sling which we felt was > the best solution for this procedure. > Although permanent, if necessary the doctor could go back and > make adjustments. Within 24 hours after the surgery, my son > was up and about, pretty much back to his very active normal > behavior. We are very pleased with the results. > > We were advised by the same doctor/specialist that our son > now needs the transnasal wiring procedure to bring his eyes > in closer and recommends this procedure be done this summer. > We are now in the process of interviewing specialists who are > familiar with this procedure. > > I am writing in general to get some information from members > of this group who are familar with this procedure, may have > had this done. > ly this surgery frightens me more than the sling, which > was very tramatic and nerve racking for both my husband and > myself. Our son recovered nicely but it took us a while to > recover emotionally!! > > We live in the Ft. Lauderdale/Miami area and have been > referred to Dr. > E. with Bascom Palmer Eye Institute, > University of Miami. He is the Assistant Professor - > Ophthalmic Plastic, Orbital Surgery and Oncology. > > Please share your experience and/or advise. Thank so much > for listening. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Would someone please explain what sling surgery involves?Andy Bowles & Shireen Mohandes <andy.bowles@...> wrote: HiI have tried to obtain some material that may be of use to you. I contacteda doctor who is running a research project on BPES at Moorfields Eyehospital in London. Here is the information he sent to me, please see below.It is good that we are able to ask fellow group members about information.The main thing to understand is that the only persons able to supply medicaladvice are, as Dr Hardy says, a doctor and an ocularplastic surgeon.When I write to the various specialists, I always tell them that our grouptries to help obtain information about experiences, build friendships & provide support. And that the group, in general, does not seek medicaladvice from others members of the group about treatment options orendorsements.Our group is lucky enough to have a few doctors as members. In addition,some of our members are in the healthcare profession and are able to respondto questions concerning their area of expertise.Much of what we face is bewildering. Please keep the questions coming. Themore information we can obtain and share, the better.RegardsShireen MohandesLondon, England(I am 45 yrs old, and the only person in my family with BPES)~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~From: Hardy Sent: 12 March 2006 11:36andy.bowles@...Subject: Re: a questions for youDear Shireen,Thankyou for the email.I am back in Australia now, but still in touch with the project. The bloodsare being analysed, and I hope we will have some results at some stage inthe next month or so. It all takes a bit of time, as you can imagine, as itis not urgent research.Regarding trans-nasal wiring: This procedure is done when the space betweenthe inner angles of the eyes (which is widened in BPES, and is calledtelecanthus) is too large to be corrected by operating on the soft tissuesin this area alone, especially the tendon which connects the inner angles ofthe eyes to the bone on the side of the nose. The wire is passed through /around said tendons and then passed through the nasal cavity to the otherside, where it is connected to the opposite tendon in a similar fashion. Thewire is tightened and effectively brings the inner angles of the eye on eachside closer together. The outcome can be a little unpredictable in somecases.Not that many people have had it done as it doesn't need to be done toooften, as the distance between the inner angles of the eyes is usually notso great, but it certainly is done and has been done on BPES patientstreated at Moorfields (and elsewhere, of course!).I'm afraid I can't easily find an image of the procedure to send you, mainlybecause of copyright rules, but you could find it in a text book ofoculoplastic surgery if necessary.You are absolutely right not to try to give medical advice - it can be acomplicated area, so others are best referred to their own doctor +/- anoculoplastic or plastic surgeon.Please feel free to keep in touch, especially to find out how the researchis going.Kind regards, Hardy> blepharophimosis Hi, new member> > I have a 6 year old son who in December of 2003, he was 4 at > the time, had the sling operation done. The > Doctor/Specialist inserted a silicone sling which we felt was > the best solution for this procedure. > Although permanent, if necessary the doctor could go back and > make adjustments. Within 24 hours after the surgery, my son > was up and about, pretty much back to his very active normal > behavior. We are very pleased with the results.> > We were advised by the same doctor/specialist that our son > now needs the transnasal wiring procedure to bring his eyes > in closer and recommends this procedure be done this summer. > We are now in the process of interviewing specialists who are > familiar with this procedure. > > I am writing in general to get some information from members > of this group who are familar with this procedure, may have > had this done. > ly this surgery frightens me more than the sling, which > was very tramatic and nerve racking for both my husband and > myself. Our son recovered nicely but it took us a while to > recover emotionally!!> > We live in the Ft. Lauderdale/Miami area and have been > referred to Dr. > E. with Bascom Palmer Eye Institute, > University of Miami. He is the Assistant Professor - > Ophthalmic Plastic, Orbital Surgery and Oncology.> > Please share your experience and/or advise. Thank so much > for listening.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2006 Report Share Posted March 13, 2006 Hi Take a look here: http://www.emedicine.com/ent/topic97.htm It is a comprehensive site. I think that the information you are looking for is here. If you have difficulty understanding some parts then you may like to print it off and take it to your doctor or optician and ask them to explain some of the medical terms to you. Regards Shireen From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of JULIE IKENSent: 13 March 2006 01:48blepharophimosis Subject: RE: blepharophimosis Hi, new member Would someone please explain what sling surgery involves?Andy Bowles & Shireen Mohandes <andy.bowles@...> wrote: HiI have tried to obtain some material that may be of use to you. I contacteda doctor who is running a research project on BPES at Moorfields Eyehospital in London. Here is the information he sent to me, please see below.It is good that we are able to ask fellow group members about information.The main thing to understand is that the only persons able to supply medicaladvice are, as Dr Hardy says, a doctor and an ocularplastic surgeon.When I write to the various specialists, I always tell them that our grouptries to help obtain information about experiences, build friendships & provide support. And that the group, in general, does not seek medicaladvice from others members of the group about treatment options orendorsements.Our group is lucky enough to have a few doctors as members. In addition,some of our members are in the healthcare profession and are able to respondto questions concerning their area of expertise.Much of what we face is bewildering. Please keep the questions coming. Themore information we can obtain and share, the better.RegardsShireen MohandesLondon, England(I am 45 yrs old, and the only person in my family with BPES)~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~From: Hardy Sent: 12 March 2006 11:36andy.bowles@...Subject: Re: a questions for youDear Shireen,Thankyou for the email.I am back in Australia now, but still in touch with the project. The bloodsare being analysed, and I hope we will have some results at some stage inthe next month or so. It all takes a bit of time, as you can imagine, as itis not urgent research.Regarding trans-nasal wiring: This procedure is done when the space betweenthe inner angles of the eyes (which is widened in BPES, and is calledtelecanthus) is too large to be corrected by operating on the soft tissuesin this area alone, especially the tendon which connects the inner angles ofthe eyes to the bone on the side of the nose. The wire is passed through /around said tendons and then passed through the nasal cavity to the otherside, where it is connected to the opposite tendon in a similar fashion. Thewire is tightened and effectively brings the inner angles of the eye on eachside closer together. The outcome can be a little unpredictable in somecases.Not that many people have had it done as it doesn't need to be done toooften, as the distance between the inner angles of the eyes is usually notso great, but it certainly is done and has been done on BPES patientstreated at Moorfields (and elsewhere, of course!).I'm afraid I can't easily find an image of the procedure to send you, mainlybecause of copyright rules, but you could find it in a text book ofoculoplastic surgery if necessary.You are absolutely right not to try to give medical advice - it can be acomplicated area, so others are best referred to their own doctor +/- anoculoplastic or plastic surgeon.Please feel free to keep in touch, especially to find out how the researchis going.Kind regards, Hardy> blepharophimosis Hi, new member> > I have a 6 year old son who in December of 2003, he was 4 at > the time, had the sling operation done. The > Doctor/Specialist inserted a silicone sling which we felt was > the best solution for this procedure. > Although permanent, if necessary the doctor could go back and > make adjustments. Within 24 hours after the surgery, my son > was up and about, pretty much back to his very active normal > behavior. We are very pleased with the results.> > We were advised by the same doctor/specialist that our son > now needs the transnasal wiring procedure to bring his eyes > in closer and recommends this procedure be done this summer. > We are now in the process of interviewing specialists who are > familiar with this procedure. > > I am writing in general to get some information from members > of this group who are familar with this procedure, may have > had this done. > ly this surgery frightens me more than the sling, which > was very tramatic and nerve racking for both my husband and > myself. Our son recovered nicely but it took us a while to > recover emotionally!!> > We live in the Ft. Lauderdale/Miami area and have been > referred to Dr. > E. with Bascom Palmer Eye Institute, > University of Miami. He is the Assistant Professor - > Ophthalmic Plastic, Orbital Surgery and Oncology.> > Please share your experience and/or advise. Thank so much > for listening.> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2007 Report Share Posted August 14, 2007 Hi, I'm Mike, I have severe chronic brittle asthma, Anaphalaxsysis and vocal chord dysfunction. Apart from that i'm fine really. The Local health authority here in Suffolk in the UK has just approved the funding for 4 months ofthe Xolair treatment as a trial. I'm hoping it will turn around the decline that has taken me from an active Manager and hill walker to the disabled and overweight chap I have become. It would be good to know how it has worked for my fellow sufferers. On the bright side it has ment that my wife and I bought a boarding kennels and I am writting a novel. So there has been some good even in this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 14, 2007 Report Share Posted August 14, 2007 Hi Mike I have been on Xolair for 6 years and cannot sing its praises high enough. I have the same level of conditions you do other than the vocal chord dysfunction. Having been hospitalized and ventilated I was waiting to die. I really hope it works the same magic for you. I hope you get more than 4 months as you will be in the early stages of noticing a difference. I remember knowing I was better within weeks as the Ventolin usage had more than halved and no steroids. By four months you will know you are onto a good thing. I live in Surrey, UK. All the best and please let me know how you get on. Kindest regards Sally _____ From: [mailto: ] On Behalf Of mikeday67 Sent: 14 August 2007 18:49 Subject: [ ] Hi, new member Hi, I'm Mike, I have severe chronic brittle asthma, Anaphalaxsysis and vocal chord dysfunction. Apart from that i'm fine really. The Local health authority here in Suffolk in the UK has just approved the funding for 4 months ofthe Xolair treatment as a trial. I'm hoping it will turn around the decline that has taken me from an active Manager and hill walker to the disabled and overweight chap I have become. It would be good to know how it has worked for my fellow sufferers. On the bright side it has ment that my wife and I bought a boarding kennels and I am writting a novel. So there has been some good even in this. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 28, 2010 Report Share Posted July 28, 2010 Welcome to our group, ! Join in whenever you like! Roxanna Whenever I feel blue, I start breathing again. ( ) hi, new member Hi Everyone, My name is . I am a stay-at-home mommy to my sweet 4-yr-old boy. I have suspected for a couple years that he might have Asperger's, but now it is undeniable. I really am just looking for some encouragement right now. I feel pretty sad with this realization, not that it's the end of the world, but I'm sure you all understand... Thanks, -- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.