Guest guest Posted May 24, 2010 Report Share Posted May 24, 2010 , My daughter Avery had the same thing happen. The doctor had to remove the slings because her body was rejecting them. When he went in to remove the slings, he found that the growth tissue had not affected her eyes just that it was her body’s way of protecting the area from the slings. We are probably going to have another surgery scheduled this year to use the fascia muscle from her thigh. Nicki From: blepharophimosis [mailto:blepharophimosis ] On Behalf Of Sent: Monday, May 24, 2010 3:54 AM To: blepharophimosis Subject: blepharophimosis Eyelid problems Hi, Just wondering if anyone has had a similar situation or knows what this could be. My daughter is 10 months old now and had brow suspension surgery when she was 10 weeks old. The surgeon put in silicon rods to hold her eyelids up for now. He says this is just temporary. I have not had any problems until now. Her right eyelid keeps looking really sore and gets a big spot (almost looks like a boil) on it. It has bled once and seems to really bother her. I took her back to the surgeon who told me he has only heard of this happening once before and it may be an infection. This would mean removing the silicon rod on the right eye and leaving it out for a while until the infection clears up (which would mean her right eyelid would drop) and then putting the silicon rod back in again. I really don't want her to have any uneccessary operations and was wondering if anyone knows what to do! She is due to have the inner corners of her eyes done this year which I am prepared for but I'm not happy to have another 2 done as well. I'm really scared because the surgeon has said that maybe it was a one off and hopefully it won't happen again but unfortunately it has! I put Chloropenicol eye ointment on at least 3 times a day and eye drops every 2 hours. Also does anyone know if the weather may affect her eyes because this has only started happening since the weather has become really hot. I asked the surgeon this and he said this is not the case. Any replies would be appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2010 Report Share Posted May 25, 2010 Hiya Nicki and , I asked my Mum why I didn't have the scar on the back of my thigh like so many of you are saying you have. She said I had donor tissue for the eyelid suspension. I have no idea the surrounding information on this as I was under 5 years old at the time, and haven't really brought the procedure up with Mum much in the past. I'm 27 years old now and my daughter doesn't have BPES so there really didn't seem to be a need to ask. I know using your own, means the body is less likely to reject the tissue. Still it seems donor tissue would perhaps be equally as effective as the sillicon rods. I wonder how much of an option it really would be in 2010. *Big Hugs* Be good Belinda in Brisbane Australia. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2010 Report Share Posted May 27, 2010 My husband had a problem similar to this when he was little. It started only in one eye so he had to have that sling removed and go without for awhile. The other eye rejected the sling a few months later so he had to have that one taken out as well. In the end, he ended up with donor muscles instead of slings, but I think he went about a year without anything after he rejected the original slings. I know none of us want our children to go through unnecessary surgeries, but it is my understanding that once the slings begin to be rejected there's not much to be done to keep them.Best of luck to you and your little one!HeidiFrom: <mparker81@...>blepharophimosis Sent: Mon, May 24, 2010 3:53:31 AMSubject: blepharophimosis Eyelid problems Hi, Just wondering if anyone has had a similar situation or knows what this could be. My daughter is 10 months old now and had brow suspension surgery when she was 10 weeks old. The surgeon put in silicon rods to hold her eyelids up for now. He says this is just temporary. I have not had any problems until now. Her right eyelid keeps looking really sore and gets a big spot (almost looks like a boil) on it. It has bled once and seems to really bother her. I took her back to the surgeon who told me he has only heard of this happening once before and it may be an infection. This would mean removing the silicon rod on the right eye and leaving it out for a while until the infection clears up (which would mean her right eyelid would drop) and then putting the silicon rod back in again. I really don't want her to have any uneccessary operations and was wondering if anyone knows what to do! She is due to have the inner corners of her eyes done this year which I am prepared for but I'm not happy to have another 2 done as well. I'm really scared because the surgeon has said that maybe it was a one off and hopefully it won't happen again but unfortunately it has! I put Chloropenicol eye ointment on at least 3 times a day and eye drops every 2 hours. Also does anyone know if the weather may affect her eyes because this has only started happening since the weather has become really hot. I asked the surgeon this and he said this is not the case. Any replies would be appreciated. Thanks Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 Hi, I'm so sorry I'm coming late to this because it's very relevant for our daughter too. Shanti is 2 1/2 now and just had one sling removed because of suture granuloma (boil-like thing) and infection. She had it done by Mr Abou Rayyah at Moorfields and he said that it was the first time he had seen this type of infection - not just the suture granuloma, but apparently also infection in the sling. They sent the pus for analysis to find out what the infection was. The only thing I can think of is that we live in Nigeria, it is extremely hot and dusty and maybe some strange bug managed to get in through the tiny incisions?? So I guess that could be the same as your daughter's case ? I'm surprised that they were so surprised to be honest, it sounds like it is not that unusual after all? Shanti is scheduled to have the sling replaced in a few weeks time. The doctors have told me that it is extremely unlikely that the sling will be rejected again - but going by your experiences that doesn't seem to be true. So now I am wondering whether she should have the operation or not. And what the alternatives would be? She is too young for the fascia lata operation (using her own tissue) and we also don't want her to have any permanent operation at all if possible. But her right eye lid is much lower than the left and it is affecting her sight. We are patching which is apparently helping. I'd love to hear of more cases of this - the slings causing problems more than once, or being accepted when replaced - so that I can properly discuss it with the surgeon when we are at Moorfields in a couple of weeks. Any thoughts? I'll post some recent pictures of Shanti so you can see what I'm talking about. Tessa --- In blepharophimosis , Heidi Dembowski <heididembowski@...> wrote: > > My husband had a problem similar to this when he was little. It started only in one eye so he had to have that sling removed and go without for awhile. The other eye rejected the sling a few months later so he had to have that one taken out as well. In the end, he ended up with donor muscles instead of slings, but I think he went about a year without anything after he rejected the original slings. I know none of us want our children to go through unnecessary surgeries, but it is my understanding that once the slings begin to be rejected there's not much to be done to keep them. > Best of luck to you and your little one! > Heidi > > > > > > ________________________________ > From: <mparker81@...> > blepharophimosis > Sent: Mon, May 24, 2010 3:53:31 AM > Subject: blepharophimosis Eyelid problems > > > Hi, > > Just wondering if anyone has had a similar situation or knows what this could be. My daughter is 10 months old now and had brow suspension surgery when she was 10 weeks old. The surgeon put in silicon rods to hold her eyelids up for now. He says this is just temporary. I have not had any problems until now. Her right eyelid keeps looking really sore and gets a big spot (almost looks like a boil) on it. It has bled once and seems to really bother her. I took her back to the surgeon who told me he has only heard of this happening once before and it may be an infection. This would mean removing the silicon rod on the right eye and leaving it out for a while until the infection clears up (which would mean her right eyelid would drop) and then putting the silicon rod back in again. > > I really don't want her to have any uneccessary operations and was wondering if anyone knows what to do! She is due to have the inner corners of her eyes done this year which I am prepared for but I'm not happy to have another 2 done as well. I'm really scared because the surgeon has said that maybe it was a one off and hopefully it won't happen again but unfortunately it has! > > I put Chloropenicol eye ointment on at least 3 times a day and eye drops every 2 hours. > > Also does anyone know if the weather may affect her eyes because this has only started happening since the weather has become really hot. I asked the surgeon this and he said this is not the case. > > Any replies would be appreciated. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2010 Report Share Posted June 24, 2010 p.s pictures of Shanti are in Bipin's (my son) file, as I can't work out how to change the name of the file... --- In blepharophimosis , Heidi Dembowski <heididembowski@...> wrote: > > My husband had a problem similar to this when he was little. It started only in one eye so he had to have that sling removed and go without for awhile. The other eye rejected the sling a few months later so he had to have that one taken out as well. In the end, he ended up with donor muscles instead of slings, but I think he went about a year without anything after he rejected the original slings. I know none of us want our children to go through unnecessary surgeries, but it is my understanding that once the slings begin to be rejected there's not much to be done to keep them. > Best of luck to you and your little one! > Heidi > > > > > > ________________________________ > From: <mparker81@...> > blepharophimosis > Sent: Mon, May 24, 2010 3:53:31 AM > Subject: blepharophimosis Eyelid problems > > > Hi, > > Just wondering if anyone has had a similar situation or knows what this could be. My daughter is 10 months old now and had brow suspension surgery when she was 10 weeks old. The surgeon put in silicon rods to hold her eyelids up for now. He says this is just temporary. I have not had any problems until now. Her right eyelid keeps looking really sore and gets a big spot (almost looks like a boil) on it. It has bled once and seems to really bother her. I took her back to the surgeon who told me he has only heard of this happening once before and it may be an infection. This would mean removing the silicon rod on the right eye and leaving it out for a while until the infection clears up (which would mean her right eyelid would drop) and then putting the silicon rod back in again. > > I really don't want her to have any uneccessary operations and was wondering if anyone knows what to do! She is due to have the inner corners of her eyes done this year which I am prepared for but I'm not happy to have another 2 done as well. I'm really scared because the surgeon has said that maybe it was a one off and hopefully it won't happen again but unfortunately it has! > > I put Chloropenicol eye ointment on at least 3 times a day and eye drops every 2 hours. > > Also does anyone know if the weather may affect her eyes because this has only started happening since the weather has become really hot. I asked the surgeon this and he said this is not the case. > > Any replies would be appreciated. > > Thanks > > > Quote Link to comment Share on other sites More sharing options...
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