Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi again Ruth, We are from Christchurch, New-Zealand, and Ethan is now 16 months old:) His pupils also get unexposed at times, and when this happens we think it can't be good, but we have told the opthalmologist this, and he said as long as he has a good chin up-head up posture that his pupils are exposed, but there still are times that they arn't!, like when he smiles, which he does ALL the time, he is one happy wee guy:), we wonder how he see's properly then, we have noticed lately since he is walking , that he is walking along and he walk's straight into a door or whatever, probably because he doesn't have good binocular vision, it's so hard, because the Dr said if he has surgery at about 4 years old, the tendon they use from his leg is matured enough, and he won't need donor tissue for the ptosis lift, plus the skin- face is more mature then for better results??? anyways, we see him again in 2 months, will reassess then, it's amazing how different Dr's view the whole situation ha! Will talk again soon...Hope Ruth is doing good:) Leanne. PS: When they did Ruths ptosis lift, did they have to cut the outer corner of her eyes to make the eye opening wider!, Our Ethan has a small opening so when we lift his top eyelid, there is hardly any stunning difference, so how do they make the opening of the eye look wider? -- blepharophimosis Ruths surgery> > Ruths surgery went well. She seems to be looking at thw world in a > whole new way. I posted new pics. You can really see her big > beautiful blue eyes now. Thank you all again for all the info and > words of encouragement, Jill> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 hi leanne i know its funny how you say that the doctors all have different views, my son lynden had his first surgery by 6 weeks old, our doctor said it was necessary because of his vision too, he told me that the reasn for doing it then is because the younger you are the better you heal, he did a brow lift then the way he made my sons eyes wider is that he cut the "inside" corners to make a longer horizontal line, then another brow lift, unlike you he did not use a leg tendon he used silicone to do most of this, i actually did not know that you could use a tendon ( im gonna ask the doctor if he recommends it for my son) im sure you already did but if you check out my sons pictures ( lynden) you may be able to see what he did on the inside corners. you can see the difference from the 3rd and the 4th picture if you look at it full size you can tell a bit better, like your son my son smiles really big and his eyes dissappear so you cannot always tell that his eyes are really open alot more. Tonikka blepharophimosis Ruths surgery> > Ruths surgery went well. She seems to be looking at thw world in a > whole new way. I posted new pics. You can really see her big > beautiful blue eyes now. Thank you all again for all the info and > words of encouragement, Jill> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hi Tonikka... What about the tear ducts?....From cutting on the inside of the eye?...Wow 6 weeks old is when Ethan 1st got diagnosed with actually having bleph, he did learn to open his eyes wider as he grew, and apart from runnign into some doors, you wouldn't believe he had anything up with his eyes:)...Yes we got told at the 1st visit about using the tendon from his leg, and thats why he suggests waiting for as long as you can for that 1st surgery, so its developed properly, its amazing all the different results from the pix also ha!...Do you find after his surgeries that he still gets looked at?...Talk soon. Leanne. -- blepharophimosis Ruths surgery> > Ruths surgery went well. She seems to be looking at thw world in a > whole new way. I posted new pics. You can really see her big > beautiful blue eyes now. Thank you all again for all the info and > words of encouragement, Jill> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Leanne hi again, it is always a risk with the tear ducts but in lyndens case he had lots of extra skin to spare. yah Lyn gets the stares I mean he probably does not get as much as I think he gets but I am very over protective, we want to buy a house but I don't want to move out of my area ( no houses for sale here) because I do not want to have to change his school. I think of it as the kids there accept him for who he is and I do not want him to go through all of the what's wrongs and whys at a new school, kids can be cruel.!!!!! Lynden can still have surgeries in the future but I am leaving that up to him. he ahs really good vision, I think that is because we got it fixed so early, I do know that when he was younger he really seemed to have no depth perception and was very clumsy too. he grew out of it though. I do notice that when he is looking down instead of just bringing his eyes down to the thing he is looking at he basically puts his whole head down over it and looks at it from above the object. ( confusing sorry). he does tell me that he ahs eyes like this because he has superpowers and that god made him special , and that everyone looks at him because they are jealous ( kids ey!!!!!!) Tonikka blepharophimosis Ruths surgery> > Ruths surgery went well. She seems to be looking at thw world in a > whole new way. I posted new pics. You can really see her big > beautiful blue eyes now. Thank you all again for all the info and > words of encouragement, Jill> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hi Jill.. My Ethan has just had his first few school visits and is starting on Wednesday. His teacher came up with this idea to get around the teasing. She is going to take him round all the classes and introduce him as a new boy and talk about his eyes and answer all the questions etc that the kids have and tell them that she would like them all to keep an eye out for Ethan and to look after him. She thinks that this will work as it has with others in the school.. Our school has a special needs unit so the kids are used to seeing 'differnent' kids but still they all do he teasing thing at some stage.. Maybe this is a good thing to suggest to teachers when any of our littlies start school. blepharophimosis Ruths surgery> >> > Ruths surgery went well. She seems to be looking at thw> world in a> > whole new way. I posted new pics. You can really see her big> > beautiful blue eyes now. Thank you all again for all the> info and> > words of encouragement, Jill> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 leelee wrote: > Hi Tonikka... > > What about the tear ducts?....From cutting on the inside of the eye?... By moving the inner corner of the eye opening away from the tear duct, it can make the tear duct less effective, but usually doesn't. In my case, one of my tear ducts (left eye) was ineffective, but the other one was still working OK. No symptoms (watery eye) until about 10 years afterwards, when I had some surgery to move the tear duct closer to the corner. Tried twice, but both attempts didn't help, so the surgeon finally solved it by moving the corner of the eye back a tiny bit closer to the tear duct, partially reversing what he'd done originally. Not really noticeable, though. Look closely at my posted picture and you'll see the left inner canthus (on the right in the pic) is slightly rounded (where it was " re-BPEI'd " ), compared with the other. It's relatively rare to cut the outer corner of the eye opening, since it's usually not the cause of the problem. Blepharophimosis (at least with BPEI) is usually due to the inner corners being too far from the nose (telecanthus) rather than the outer corners being too close (which no doubt has some other fancy Latinesque name). > ...Yes we got > told at the 1st visit about using the tendon from his leg, and thats why he > suggests waiting for as long as you can for that 1st surgery, so its > developed properly, I didn't think they ever use a tendon (which joins muscles to bones), do they? Truly roolly? That seems a bit extreme. It's usually a narrow strip of fascia lata tissue that they use, which is the tough, slippery stuff that surrounds a thigh/hip muscle (the tensor fascia lata muscle) and keeps it in its shape, while allowing it to slip against other muscles. I don't know why they choose that particular one - probably because it's big (plenty of tissue to spare) and out of the way (less visible scarring) and easy to get to, good blood supply (heals faster), etc. Here's a gratuitous random link: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=8\ 96128 & dopt=Abstract Sorry, I kinda warm to my subject occasionally. Toodle-pip. Rob Quote Link to comment Share on other sites More sharing options...
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