Guest guest Posted February 23, 2008 Report Share Posted February 23, 2008 HI! I'm new to the group. We have 3 children, only one with Bleph. We also don't have any other family members with this. Ethan had his first surgery at 6months(a sling). He is well adjusted and has 20/20 vision. I was wondering if any of you had opinions on additional surgeries. I noticed in some of the photos some of the young children seem to have 3 incisions versus the one than had in the brow. Given that techniques continue to change rapidly with this issue I would like to know what the latest opinions are. We were advised at a check-up that they no longer replace the silicon sling with thigh fascia, were that was the norm the previous year. Ethan is now 12 yrs. and his last check up the doctors agreed any additional surgery would be up to him. With Highschool approaching I thought it would be a good idea to have additinal info. Thanks, Emalee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Hi Emalee, My daughter, aged 21 months has BPES and had sling surgery on both eyes at 6mths, Jan -07. We were advised by our surgeon here in Ireland, that they would not replace the silicone either with fascia from the leg. But 's silicone sucture on one eye has not healed properly, and on a follow up visit with the specialist in the UK, that surgeon said that he would replace the silicone with fascia from her leg at 4yrs old, after he has done the eye widening operation (which is not available in Ireland unfortunately!) So in my very humble opinion, I think, based on what I have been told, and from reading the many posts on this website - it really is on a case by case basis. Some surgeons have different preferences or thoughts on what is best, and I suppose that's fair enough, that you have to do what is specifically right for the person that is having the surgery. But I am sure you will get lots of info, advice and details from the wonderful members of this site, who have way more experience than I have ;0) Welcome to the group! Kildare, Ireland blepharophimosis Surgery HI! I'm new to the group. We have 3 children, only one with Bleph.We also don't have any other family members with this. Ethan had his first surgery at 6months(a sling). He is well adjusted and has 20/20 vision. I was wondering if any of you had opinions on additional surgeries. I noticed in some of the photos some of the young children seem to have 3 incisions versus the one than had in the brow. Given that techniques continue to change rapidly with this issue I would like to know what the latest opinions are. We were advised at a check-up that they no longer replace the silicon sling with thigh fascia, were that was the norm the previous year. Ethan is now 12 yrs. and his last check up the doctors agreed any additional surgery would be up to him. With Highschool approaching I thought it would be a good idea to have additinal info.Thanks, Emalee Send instant messages to your online friends http://uk.messenger. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2008 Report Share Posted March 4, 2008 Hi , Thank you for the information. It does seem to be on a case per case basis. What will be involved in your daughters eye widening operation? I had read about a new technique done in Europe posted by the EPOS. I have to say I'm terribly jealous of your location... I've always wanted to travel to Ireland. Thanks, Emaleecretemum <cretemum@...> wrote: >> Hi Emalee,> > My daughter, aged 21 months has BPES and had sling surgery on both eyes at 6mths, Jan -07. We were advised by our surgeon here in Ireland, that they would not replace the silicone either with fascia from the leg. But 's silicone sucture on one eye has not healed properly, and on a follow up visit with the specialist in the UK, that surgeon said that he would replace the silicone with fascia from her leg at 4yrs old, after he has done the eye widening operation (which is not available in Ireland unfortunately!)> So in my very humble opinion, I think, based on what I have been told, and from reading the many posts on this website - it really is on a case by case basis. Some surgeons have different preferences or thoughts on what is best, and I suppose that's fair enough, that you have to do what is specifically right for the person that is having the surgery. But I am sure you will get lots of info, advice and details from the wonderful members of this site, who have way more experience than I have ;0)> > Welcome to the group!> > > Kildare, Ireland> > > blepharophimosis Surgery> > HI! I'm new to the group. We have 3 children, only one with Bleph.> We also don't have any other family members with this. Ethan had his > first surgery at 6months(a sling). He is well adjusted and has 20/20 > vision. I was wondering if any of you had opinions on additional > surgeries. I noticed in some of the photos some of the young children > seem to have 3 incisions versus the one than had in the brow. Given > that techniques continue to change rapidly with this issue I would like > to know what the latest opinions are. We were advised at a check-up > that they no longer replace the silicon sling with thigh fascia, were > that was the norm the previous year. Ethan is now 12 yrs. and his last > check up the doctors agreed any additional surgery would be up to him. > With Highschool approaching I thought it would be a good idea to have > additinal info.> Thanks, > Emalee> > > > > Send instant messages to your online friends http://uk.messenger.>Hi ,I've just read your posting with interest. My son, Dominic (see photos under Dominic) had the frontalis sling op on 30th January this year. All seemed to go well. But his right eye, like your case, never healed. 2 weeks ago it became badly infected and he was put on high dose antibiotics. The infection has gone down now but there is a visible red line between one upper and the corresponding lower incision. Our surgeon says it looks as though the Gortex material (he is too young at 18 months for the thigh muscle to be used) has begun to 'cheesewire' through the surrounding tissue.We are due back on the 12th to see the surgeon (unless things get worse) to make the final decision, but it looks likely that his eye will need to be re-done; it has started to droop over his pupil again.So you are very right to advise that it is a 'case by case' decision; we had also hoped that this would be 'it'. Our surgeon thought that Dominic would perhaps not even need the operation redoing with fascia lata at aged approx 4. Thanks for the interesting post, and good luck to all those going through this.Best WishesLeonie & DomEmalee Barrow Never miss a thing. Make your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Caroline Let Todd know that Aedan (age 7) after surgery can still roll his eyes back. allison In a message dated 1/6/2010 6:23:51 A.M. Eastern Standard Time, cazobbs@... writes: eekafter posting last week that Todd hasn't had any surgery because his vision hasn't been affected we are now fast approaching a completely different situation!He has been needing to sit closer to things so when his eye test showed his vision was down we weren't surprised. Everyone assumed a new glasses prescription and it would all be fine. however yesterday his prescription was checked and doesn't appear to have changed significantly. The best conclusion is he will need a lid lift, but of course they want to do another vision test in a couple of months.....We however would prefer to go to Moorfields, Todd is the only child they see here with BPES and I really think if the decision to operate needs to be made it should be made and the operation done by someone who has experience, so as long as we are not snowed in tomorrow! we are off to the GP to get another referral to MoorfieldsThis all seems so scary - Todd is not impressed with he idea and really doesn't want to lose his ability to roll his eyes back in his head - typical 7 year old boy take on it! Wr of course just want to do the best thing for him. We saw Mr Collin nearly 4 years ago - but I understand he no longer does NHS work? if not do we just ask for a referal to Moorfields and take pot luck? or is there another consultant we should try to see there?Caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2010 Report Share Posted January 6, 2010 Hi Caroline I think you should feel confident that Mr Colin has trained an army of excellent consultants at Moorfields. There are top doctors in hospitals all around the country, and I am sure that you will be in safe hands, and with experienced people. Take care Shireen From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of cazobbs Sent: 06 January 2010 11:23 blepharophimosis Subject: blepharophimosis surgery eek after posting last week that Todd hasn't had any surgery because his vision hasn't been affected we are now fast approaching a completely different situation! He has been needing to sit closer to things so when his eye test showed his vision was down we weren't surprised. Everyone assumed a new glasses prescription and it would all be fine. however yesterday his prescription was checked and doesn't appear to have changed significantly. The best conclusion is he will need a lid lift, but of course they want to do another vision test in a couple of months..... We however would prefer to go to Moorfields, Todd is the only child they see here with BPES and I really think if the decision to operate needs to be made it should be made and the operation done by someone who has experience, so as long as we are not snowed in tomorrow! we are off to the GP to get another referral to Moorfields This all seems so scary - Todd is not impressed with he idea and really doesn't want to lose his ability to roll his eyes back in his head - typical 7 year old boy take on it! Wr of course just want to do the best thing for him. We saw Mr Collin nearly 4 years ago - but I understand he no longer does NHS work? if not do we just ask for a referal to Moorfields and take pot luck? or is there another consultant we should try to see there? Caroline Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2010 Report Share Posted January 8, 2010 Thanks for all your support and replies to reassure Todd! our GP has readily agreed to write another referal letter to Moorfields, so one hurdle down... Caroline 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.