You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.

This one is about: Finding a New Doctor


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Someone writes:

I have thought recently about moving back "home" (I've been gone for 10 years) but my biggest hesitation is that the surgeons I have talked to say that they don't know of a surgeon they can refer me to up there. That the team I have are the "pioneers" of cleft repair. I have to believe what they say for now and don't know where to turn to find out if  that's true or not.

Response:

Hi. I don't know the details of your case, but perhaps it will help to know that my daughter, who is four and has a  cleft palate with no lip involvement, has been to three cleft teams--one in New Jersey, one in New York City and now one in London, not to mention various and sundry physicians and specialists unaffiliated with a team. (Her second myringotomy was done by an ENT who wasn't part of a team. Her speech therapists have not been part of a team.) I  found the NYC team that did my daughter's surgery by 1) getting a list of teams in our area from the Cleft Palate Foundation and 2) interviewing plastic surgeons, parents and anyone I could get my hands on. The Cleft Palate Association sent me a list of seven NJ teams, all within driving distance of our NJ home, not to mention a half dozen more a stone's throw away in New York City.

Call the Foundation at (800) 24-CLEFT and they will send you a list for the Detroit area. I'm willing to bet there's at least one good one up there. BTW, I'm not actually sold on the efficacy of teams and have found our annual visits to the whole team more of a nuisance than anything else. It's been more helpful to me to visit specialists privately,  including the plastic surgeon, but then Laura's problems have been relatively minor compared to what I've read on this list. All this by way of saying that you may not need a team if you can find knowledgeable specialists. IMHO. Finally, each team I investigated assured me it was the best, with its own unique approach and even surgical 
techniques and I think you may have come up against this professional egocentricity with respect to your current team. Don't let it deter you from investigating other options. J B

Everybody's cleft palate team or doctors are the best just ask them. Personally, I think my own doctor cannot be beat anywhere by anyone, but then if I did not feel that way, I should still be shopping! The reality is, there are very wonderful, very talented, very progressive doctors and teams throughout the world, and they all have had very good results. Most have also had occasional bad results. The important thing is that you and your doctor/team have 
a good rapport and that you have a certain degree of trust in the doctor you have chosen. Joanne


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