Posted by Crystal on 3/5/2008, 3:28 pm, in reply to "Re: destractor removel at age 3"
76.251.255.199
--Previous Message--
: Well the way I look at it is you need to deal
: with one problem at a time. The distractors
: need to come out. That is what you need to
: do nright now. If something happens down
: the road with her face because of it, you
: can cross that bridge when you get to it. I
: think the distractors need to come out and
: you can take everything else one day at a
: time. I don't think it would be a complete
: paralysis of the whole face, and if this
: doctor knows what he is doing, I don't think
: it would be permanent. She will also be
: upset in the future if she has to endure
: problems from leaving the hardware in. You
: are in a tough situation, but I don't think
: you can think about the future and
: "if" she'll be mad or
: "if" her face is paralyzed. you
: have to live in the now and right now the
: distractors need to come out. If she gets
: older and they become more embeded, and they
: cause problems, then she will need an even
: bigger surgery to get them out and she will
: be even older when she has to get it. But
: that is just my opinion, so don't just
: listen to me ... follow your heart.
:
: --Previous Message--
:
:
: --Previous Message--
: Hi. 1st of all, where do you live? Because
: if you live in New York State, I have a
: doctor for you. Has her jaw been growing ok
: even with the device stuck in? Is there any
: pain involved? By this point, it is
: probably pretty embeded in the bone and it
: will not be easy to get out. The doctor can
: do it, put with a lot of cutting, tugging
: and prying, so be prepared for her to be
: pretty sore afterwards. If she does have
: her face paralyzed, it should repair itself.
: It is not a incision that does it but more
: the stretching and pulling that damages the
: nerve. My daughter had 4 surgeries in that
: area of her face and every time, her face
: was paralyzed on one side and every time I
: thought it would be permanent, but after a
: while (a few months one time), it will come
: back. Anyway, if this is a good surgeon, he
: knows what he is doing and everything will
: be ok, she will just be pretty sore for a
: week. If you need the name of a good
: doctor, let me know.
:
: --Previous Message--
: My daughter is having her second set of
: destractors taken out 6-2008 and Im really
: scared about it. She had he first surgry at
: 3 weeks old and her cleft palate repaired in
: 2006 but the doctor said he couldnt get the
: destractors out. They have been in since she
: was 4 months old. We have swicthed doctors
: and he said he can do it. She had a nerve
: hit on her last surgry that paralized one
: side of her face but it fixed it self over
: time and thats one of the risks this time.
: Im scared if it happens again it wont fix it
: self this time. Can some reasure me
: everything will be ok.
:
:
:
: I live in Indiana and we have been going to
: Riley Childerns Hospital. The new doctor we
: are seeing only does Pierre Robin surgrys
: and he also told me he has done more
: distactor removels then any doctor in the
: county (not to sure how true that is). They
: told me we dont have to do this surgry but
: it if they stay in they could cause problems
: in the future. Im affraid if I give the ok
: and it pralizes her face she will be upset
: with me when she is older because I gave the
: ok. The surgrys seem to be harder to deal
: with the older she gets. Am I wrong for
: that, or is that normal. I thank you, you
: have made me feel alot better about getting
: this done for her.
:
:
:
I know I shouldnt think ahead but its hard not to. After having someone that has gone through the same as my daughter and I, I feel better about doing this. I knew deep down inside I needed to do it but its so hard to see her in pain and me being able to do nothing about it. I want to thank you again for helping me. I didnt think anyone was going to responed to my message, but you did and thank you so much. It makes this alot easier when you have someone to talk to that knows what your going through. I have a question. Could you feel the screws on your daughters face. I can feel a screw on my daughters right side. Sometimes she says it hurts but most of the time it doesnt seem to bother her. I think it bothers me more then it does her...thank you again. I dont think you know how beeter you have made me feel. Thank You
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