sphincter pharyngoplasty

[Karen]

My daughter (she'll be five on Sunday) has velopharyngeal insufficiency. She was scoped in April. She has a surgery called sphincter pharygoplasty scheduled for 06/28/01. I've researched this on the internet and in books but I'm looking for personal input on how the surgery went for others ie. speech outcomes post-op, any complications afterwards with speech, breathing, eating? how was recovery? What does it look like in the back of your throat? can you see the sphincter? etc etc etc. Please help, I'm nervous...Karen

[Adrianne]

Karen, I wish I had the answer to the question you are looking for because I am in need of that same info. I have a 7 year old and they are suggesting surgery this summer. I am hesitant because I have heard conflicting info regarding the surgery and it's outcome. If you have heard anything since posting, could you please forward the information, as well as letting me know how the surgery went for your daughter.
Thanks......

[Karen]

I faxed my daughter's doctor (who is three hours away) with my questions this morning. I don't get to see him for pre-op, probably only a resident - teaching hospital. I'll let you know how it goes for my daughter. From what I've read the sphincter pharyngoplasty has less side effects than the pharyngeal flap. Check out the link <a href="http://www.cleft.net/info/surgery/phvssp.html">http://www.cleft.net/info/surgery/phvssp.html</a>
Hope it helps.

[Karen]

Just in case you come back to this message board....my daughter's surgery was postponed to Aug 21st because she woke up the last two mornings with her eye glued shut with green yuckies! On antibiotics now. Please keep me posted if your child has surgery before my daughter.

[Adrianne]

Thank you for the link. We have an appointment with her plastic surgeon in August and we just saw her orthodontist. We are struggling with the decision and are awaiting a second opinion. Has your daughter had an optorator? How is her speech? I'm sorry about the postponement.
Thank you again...

[Karen]

To answer your questions...my daughter had a "obturator"; it was a dental appliance that covered a fistula (hole) in her palate after the palate surgery failed twice. She wore it for more than a year. She had her palate closed last summer. Her speech is understandable by me, most always by strangers but she substitutes sounds for sounds she can't make. She can't make air pressure sounds very well, she sounds nasal-ly. Check out the cleftnet website, i posted the sphincter pharyngoplasty question there and an adult answered me back with some good suggestions that I would have overlooked. Keep in touch, I like to have my research done and questions answered before my daughter has surgery. Sounds like you are much the same! Thanks Karen