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Posted by Mark I somehow found you talking about this and I'm currently going through this right now with my daughter. She has had 2 surgery's the last of which included the Pharyngeal Flap. She has also been tested and has Obstructive Sleep Apenea. That was 2 years ago. We have now found a new plactic surgeon and he recommends reversing the pharyngeal flap and he will also be doing a FAMM Flap which will repair her remaining fistula (tiny hole) as well as lengthen the palate. I realize that this will cause significant problems with her speech expecially since she is 7 1/2 it's almost taking 2 steps backwards, but my main concern is the sleep apnea. I would rather her have a clear airway and the speech will come back within time. We've made our decision and we're scheduled to have the surgery on July 3rd. I really hope and pray this is the last surgery she has to endure. Please feel free to email me or ask me any questions. I also have a younger daugher who had a cleft palate and I myself had a cleft palate. My family is a walking case study in cleft palates. LOL Best of luck to you all and hug your children everyday!!! Mark --Previous Message--
on 6/28/2006, 11:11 pm, in reply to "Re: sleep apnea post surgery"
75.4.159.171
Hi,
: hi debbie,
: Since i posted last message we have
: had more sleep tests done! Connor
: has severe sleep apnea and we are
: going tomorrow and next night to
: trial the c-pap!
: He is 4... The nurse told me that he
: may need upper airway
: reconstruction.
: And that the c-pap itself causes
: problems..
: This is all very scary as i am sure
: u well know..
: Just wondering if you share some
: more info on your experience or
: knowledge...
:
: thanks
: Melonie
: --Previous Message--
: hi! This is exactly what happened to
: us although my son did have apnoea
: before surgery and should therefore
: never have been a candidate but that
: is a whole other story! I think most
: kids usually have their tonsils
: removed and that helps considerably.
: In extreme cases they suggest the
: reversal..for us it wasn't an option
: as the surgery/apnoeaic probs/probs
: with anaesthetic were against him so
: he has been using cpap and will
: continue to for the rest of his
: natural life. this is by no means an
: easy option, he was 13 when he
: started, absolutely hates it etc but
: it has improved his quality of life
: for things that had always been an
: issue with him! I think if you are
: being offered the tonsillectomy this
: is a good way to go as this will
: free up a great deal of room in the
: airway. The majority of kids in a
: sleep apnoea group I am in have this
: done to reverse the apnoea and in
: the majority of cases it is
: successful!
: Mum to Simon, age 15, 22q11
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