Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 HI....My daughter ( 4 months ) just had her lids lifted. They didn't do the silicon sling because they know that this surgery won't last so they lifted it in a more temporary way ( not exactly sure what they used) will have to have her right eye done again on the 28th of October. We don't understand why but after the first week it starting falling. She sees so much better now . She is a completely different baby. Knowing what i know now, how different she is, I am so glad we didn;t wait longer. The real reason why she had it done so fast was because she was loosinf vision in her right eye. Sharon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 15, 2005 Report Share Posted October 15, 2005 Hi Jeroen I don't know if you have had the opportunity to look in the database. If you take a look you will see that several people have entered data about surgery and dates. Also, based on the people that I have met (probably about 25 people with BPES) it is my impression that we are all different. The severity seems to be an important factor in when surgery takes place. This is something that we cannot determine without expert opinion. So while I am sure it is reassuring to hear about other people's experiences, I am not sure how often people can make a meaningful comparison between one child and another. For example, I have met one girl who has never had surgery. She inherited it from her father. Her parents could not agree on when to have surgery, so they simply did not have it done. She looks pretty good. I met her when she was 12 years only, and her mother sent a photo to me last year. On the other hand, some people have had surgery at a very early age, with follow ups. Others have had just one operation at a slightly later stage. You may find it useful to read this article: http://www.emedicine.com/ent/topic97.htm It was last updated in May 2005. It is a very detailed article intended for people in the medical profession. However, I think if you sit down with a flask of coffee and an online medical dictionary then you will be able to understand a reasonable amount of it. It does cover surgical procedures and provides commentary on treatment, timing of treatment and after care. I am sure that some sections are not relevant and that you can skip reading them. I am hoping to contact a person from the eye hospital where I go to. My plan is to ask the doctor to translate and summarise this article into simple English. I am sure that this will help many people with BPES, mums and dads, as well as healthcare workers who are unfamiliar with BPES or eye surgery. I am not sure how long it will take to get the article " translated " - because I have to rely on some goodwill. I had surgery when I was 2.5, 12 and 18. I am 44 now, so it was a long time ago. The outcome of the fantastic work done by surgeons these days is far better than my treatment. But that is to be expected. At the time I was lucky to benefit from one of the most experienced people - he had operated on several hundred people!! Regards Shireen London, England > blepharophimosis Foto > > Hi, > > I posted a couple of photos. The name of the album is Jens. > Is there anybody who's cild recently underwent surgery? Which > Technique was used? Did they first correct the telecanthus or > did they start with a suspension? > > Jeroen > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 This happened to Lily, the right eye didn't stay lifted, and they did it again. I would caution you to ask your doctor about the risk of infection, because when Lily had the second surgery, she developed an infection, I think from having the surgical site exposed twice. Don't want to scare you but I wish I had known this, I am sure your doctor is aware of the possibility. So sorry you have to go through this again. But, glad to hear she is doing well. Beth > > HI....My daughter ( 4 months ) just had her lids lifted. They didn't do > the silicon sling because they know that this surgery won't last so > they lifted it in a more temporary way ( not exactly sure what they > used) will have to have her right eye done again on the 28th of > October. We don't understand why but after the first week it starting > falling. She sees so much better now . She is a completely different > baby. Knowing what i know now, how different she is, I am so glad we > didn;t wait longer. The real reason why she had it done so fast was > because she was loosinf vision in her right eye. Sharon > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 16, 2005 Report Share Posted October 16, 2005 Nobody likes undergoing surgery so its best to have it done as less as possible. However when vision is getting impaired, the lifting of the eyelids can no longer be postponed. Unfortunately the chance of relapse is much bigger at a younger age. After surgery there's always a chance of developing a postoperative infection. Second surgery in the same area does not necesarrily increase this risk, but if you are operated more often you're more likely to develop an infection sooner or later. But don't worry, most of the times surgery is not complicated by an infection. You should indeed discuss this with your doctor. You have a right to know what they are going to do, what you are facing and why certain things like relaps happen. I'm sure your doctor is willing to explain this all. We wish all the best. Jeroen > > > > HI....My daughter ( 4 months ) just had her lids lifted. They didn't > do > > the silicon sling because they know that this surgery won't last so > > they lifted it in a more temporary way ( not exactly sure what they > > used) will have to have her right eye done again on the 28th > of > > October. We don't understand why but after the first week it > starting > > falling. She sees so much better now . She is a completely different > > baby. Knowing what i know now, how different she is, I am so glad we > > didn;t wait longer. The real reason why she had it done so fast was > > because she was loosinf vision in her right eye. Sharon > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi there, my name is Tonikka and my son Lynden...(see lyndens photos) is now almost 8 years old and has had 4 surgeries..... we are from CANADA... edmonton alberta to be exact...i agree with Shireen about how everyone is different in severity and in surgeries and that it is virtually impossible to compare one to another so...... my son had his first surgery at 5 weeks of age and it would have been detrimental if we waited to his vision, then again at 4 and 5 years of age... his vision was obstructed in a huge way hence the early surgery... lynden had a brow lift with the silicone rods...(slings), with no problems whtsoever except teasing from his peers...(we nipped that one right away)he will only have more surgeries if he chooses to have any. i know alot of the individuals here had different surgeries but this is what our doctor deemed was best for us and what worked for our climate. He actually specializes in BPES surgeries and has done many many surgeries here in canada and in third world countries.... this was our experience with surgery, hope it helps Tonikka > > Hi, > > I posted a couple of photos. The name of the album is Jens. Is there > anybody who's cild recently underwent surgery? Which Technique was > used? Did they first correct the telecanthus or did they start with a > suspension? > > Jeroen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Glad to see others seems to have take the same course we have. When i first joined this group I thought my children were the only ones to have many surgeries. Seemed (maybe I am wrong) a lot of people in this group we able to wait many years before surgery and only have one. My kids all have it bad and they outgrow the surgeies after a couple of years, Me personally if they droop a lot, i want it redone. I want them to have as much lift as possible, i dislike it very much ( again only on my kids, as a parent) when i can;t see their eyes and they have limited vision. Just expressing my opinion, again . lol Hope all is well. is growing so fast, at 4 months she has figured out how to hit the music on in her crib by herself. SO at 4:30 am this morning .....she hit it on and off for 1/2 hr ...then i got up and turned off the volume so she can only see the lights go on and off ! Why are they so smart so young ...laughing :-) Tonikka <lyndenhunter@...> wrote: Hi there, my name is Tonikka and my son Lynden...(see lyndens photos) is now almost 8 years old and has had 4 surgeries..... we are from CANADA... edmonton alberta to be exact...i agree with Shireen about how everyone is different in severity and in surgeries and that it is virtually impossible to compare one to another so......my son had his first surgery at 5 weeks of age and it would have been detrimental if we waited to his vision, then again at 4 and 5 years of age... his vision was obstructed in a huge way hence the early surgery...lynden had a brow lift with the silicone rods...(slings), with no problems whtsoever except teasing from his peers...(we nipped that one right away)he will only have more surgeries if he chooses to have any. i know alot of the individuals here had different surgeries but this is what our doctor deemed was best for us and what worked for our climate. He actually specializes in BPES surgeries and has done many many surgeries here in canada and in third world countries.... this was our experience with surgery, hope it helpsTonikka>> Hi,> > I posted a couple of photos. The name of the album is Jens. Is there > anybody who's cild recently underwent surgery? Which Technique was > used? Did they first correct the telecanthus or did they start with a > suspension?> > Jeroen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Hi Jeroen, My son, Micah, just underwent surgery in February of this year at the age of three. The doctors did a YV Canthoplasty with frontalis slings (silicone rods) all at the same time. You can see pictures of Micah under " Eisele Family " . Micah was not with us when he had surgery. (We just adopted him and he had surgery in Korea while he was waiting to come home.) But I will answer anything for you I can. Best wishes, April --- jeroenkleinen <jeroen.kleinen@...> wrote: > Hi, > > I posted a couple of photos. The name of the album > is Jens. Is there > anybody who's cild recently underwent surgery? Which > Technique was > used? Did they first correct the telecanthus or did > they start with a > suspension? > > Jeroen > > > > __________________________________ Start your day with - Make it your home page! http://www./r/hs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2005 Report Share Posted October 17, 2005 Sharon sounds wonderful, keep us posted. Beth > > > > Hi, > > > > I posted a couple of photos. The name of the album is Jens. Is there > > anybody who's cild recently underwent surgery? Which Technique was > > used? Did they first correct the telecanthus or did they start with > a > > suspension? > > > > Jeroen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Tonikka, I just looked at Lynden's photos. He is a handsome young man. It is interesting to see how he developed over the years. Am I right to assume by your e-mail that her had only slings done or was there a bit more done? If so what? What is Sylicone Rods? Because he looks great. How did you nip the teasing right away? And if you dont mind, what is your doctor's name? Beth Tonikka <lyndenhunter@...> wrote: Hi there, my name is Tonikka and my son Lynden...(see lyndens photos) is now almost 8 years old and has had 4 surgeries..... we are from CANADA... edmonton alberta to be exact...i agree with Shireen about how everyone is different in severity and in surgeries and that it is virtually impossible to compare one to another so......my son had his first surgery at 5 weeks of age and it would have been detrimental if we waited to his vision, then again at 4 and 5 years of age... his vision was obstructed in a huge way hence the early surgery...lynden had a brow lift with the silicone rods...(slings), with no problems whtsoever except teasing from his peers...(we nipped that one right away)he will only have more surgeries if he chooses to have any. i know alot of the individuals here had different surgeries but this is what our doctor deemed was best for us and what worked for our climate. He actually specializes in BPES surgeries and has done many many surgeries here in canada and in third world countries.... this was our experience with surgery, hope it helpsTonikka>> Hi,> > I posted a couple of photos. The name of the album is Jens. Is there > anybody who's cild recently underwent surgery? Which Technique was > used? Did they first correct the telecanthus or did they start with a > suspension?> > Jeroen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Beth, i will for sure bring this up when i talk to her. They didn't seem concerned the two specialist i go to....they are not affiliated with each other, i did that purposly :-) But i will mention it. Sharon bethgordon03 <bethgordon03@...> wrote: This happened to Lily, the right eye didn't stay lifted, and they did it again. I would caution you to ask your doctor about the risk of infection, because when Lily had the second surgery, she developed an infection, I think from having the surgical site exposed twice. Don't want to scare you but I wish I had known this, I am sure your doctor is aware of the possibility. So sorry you have to go through this again. But, glad to hear she is doing well.Beth>> HI....My daughter ( 4 months ) just had her lids lifted. They didn't do > the silicon sling because they know that this surgery won't last so > they lifted it in a more temporary way ( not exactly sure what they > used) will have to have her right eye done again on the 28th of > October. We don't understand why but after the first week it starting > falling. She sees so much better now . She is a completely different > baby. Knowing what i know now, how different she is, I am so glad we > didn;t wait longer. The real reason why she had it done so fast was > because she was loosinf vision in her right eye. Sharon><a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 18, 2005 Report Share Posted October 18, 2005 Yes her dr. is the best...she will spend as much time as i need to explain and call me backk any day or the week any hour. jeroenkleinen <jeroen.kleinen@...> wrote: Nobody likes undergoing surgery so its best to have it done as less as possible. However when vision is getting impaired, the lifting of the eyelids can no longer be postponed. Unfortunately the chance of relapse is much bigger at a younger age. After surgery there's always a chance of developing a postoperative infection. Second surgery in the same area does not necesarrily increase this risk, but if you are operated more often you're more likely to develop an infection sooner or later. But don't worry, most of the times surgery is not complicated by an infection. You should indeed discuss this with your doctor. You have a right to know what they are going to do, what you are facing and why certain things like relaps happen. I'm sure your doctor is willing to explain this all.We wish all the best.Jeroen> >> > HI....My daughter ( 4 months ) just had her lids lifted. They didn't > do > > the silicon sling because they know that this surgery won't last so > > they lifted it in a more temporary way ( not exactly sure what they > > used) will have to have her right eye done again on the 28th > of > > October. We don't understand why but after the first week it > starting > > falling. She sees so much better now . She is a completely different > > baby. Knowing what i know now, how different she is, I am so glad we > > didn;t wait longer. The real reason why she had it done so fast was > > because she was loosinf vision in her right eye. Sharon> >><a href="http://www.TickerFactory.com/"><img border="0" src="http://www.TickerFactory.com/ezt/d/1;14;11/st/20050609/k/3901/preg.png"></a> Music Unlimited - Access over 1 million songs. Try it free. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2005 Report Share Posted October 19, 2005 Hi there Beth, thank you i think he is a handsome young man too........ lol lynden had like i said had a few surgeries.... a brow lift times 2 and his epicanthus done..(inside corners) times 2. as for the teasing it was really bad in his school in kindergarten and grade 1, unfortunatly i like to say i live in snob ville and its pretty much like father like son, like mother like daughter... lynden would never get invited to birthdays etc because the parents would say he looked weird... so of course the kids picked up this attitude. last year it was decided that lynden needed glasses so his doctor had a good idea and decided to make his prescription convex so his eyes would look magnified (hence the big eye look now) so of course if he took his glasses off there is a difference. i did however go to the school and have a meeting with his teachers and principle and was very very angry that they would allow this bullying to be done (bullying is illegal here in edmonton now) anyway they had a talk with the students and in doing that they never really singled lynden out but the concept of teasing kids got across and his grade 2 year was better. now lynden is in grade 3 and it is going great... kids grow up, he has his moments and so do other kids.. a few times over the years i would hear a parent or 2 make fun of lynden and i would bluntly say " your son has a big nose do you see me making a big deal of it?? " thinkgs like that. i would never stoop to their level and i hope my son never will either. he always tells everyone that " god made him this way because he is special " .. lyndens doctor is DR ROYCE JOHNSON, here in edmonton, alberta he does his surgeries out of the ROYAL ALEXANDRA HOSPITAL.. there are many families that he sees and has done surguries on here, from the NWT, and many other provinces... he has some pts from the states as well.. Dr chooses what surgery he does based on the severity of the ptosis, he also takes teasing into consideration and the climate you live in (humid vs not humid) all deciding factors on what materials he uses and the surgery tecnique.. hope this answers some of your questions......... sorry for the long post Tonikka, Lynden, Hunter , chris > > > > Hi, > > > > I posted a couple of photos. The name of the album is Jens. Is there > > anybody who's cild recently underwent surgery? Which Technique was > > used? Did they first correct the telecanthus or did they start with > a > > suspension? > > > > Jeroen > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2005 Report Share Posted October 19, 2005 Hi, Did other people experience bullying as well? I myself was bullied a couple of times when I was little but actually when I look back now (I'm 29 years old) it stopped at a young age (about six years old I guess). I do not have the feeling that I was bullied a lot. Maybe this has to do with it being a medical condition, like you don't make fun of a person sitting in a wheelchair. There's this other thing I hear very often: after a while, when people have got to know me, they don't see it anymore. When I was 16 this was very hard to believe, because for me at that time it was sometimes the only thing I could see in the mirror. However growing older, studying, getting married, getting children all made it loose it's importance. Now when I look in the mirror there are a lot of times when even I don't see it. Now I'm more worried about my son. He's four years old and children at school who are one year older start to notice that his eyes are smaller. His own friends don't see it yet. Jens is a very open- haerted boy so he tells a lot about school. During the last few months he told us two or three times that somenone made a comment on his eyes. We discussed this at school and they are very understanding and pay a lot of attention to possible bullying. We tell him to just say he is born this way. We try not to make a big deal of it. I was very shocked to read that there were parents who made fun of Lynden's eyes. Shouldn't they be sent back to Kindergarten? It's so childish! I pitty the children that are brought up in this way. Hope to hear about more experiences. Jeroen > > > > > > Hi, > > > > > > I posted a couple of photos. The name of the album is Jens. Is > there > > > anybody who's cild recently underwent surgery? Which Technique > was > > > used? Did they first correct the telecanthus or did they start > with > > a > > > suspension? > > > > > > Jeroen > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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