How do we choose the surgeon?

[nancy]

We, of course, will go anywhere to find the "best" surgeons, but how do we know? we are in gainesville, florida. It seems that just about every university is willing to do the procedure, but we want someone experienced with total cvr in an 18 month old. Anyone?

[xl1200c]

I think the key is experience, ask who has the most experience and how many cases they have done on older kids and how often. Maybe ask what challenges they see in doing it at 18 months old, and how they adapt to those challenges. Nationwide I have heard excellent feedback on Boston Children's, Montefiore in NY, and Dr. Fearon in TX, for example.

[jennifer kichar]

Hi there.My son Jeremy had the CVR 3 months ago at the age of 16.5 months.Our surgeons are Dr.Goodrich (NS) and Dr.Staffenberg of Montefiore Children Hosp in NY. They are wonderful and have a ton of experience with older kids.In fact, a few weeks before my sons surgery they did a CVR on a 40 year old man! Its also very important to do research on the hospital the surgeons you choose will perform the surgery at. I have a very good friend who has an amazing NS but I would never use him because of the hospital he works out of. I absolutely loved Montefiore, in fact I didn't want to leave because the staff was wonderful.We traveled there and stayed at these really nice apartments the hospital rents out just up the street and every time I had to leave to shower or what not either a nurse or volunteer would stay with my baby in the room until I came back.Btw, my little guy is autistic and it was not easy for him (not that its easy for any of our lil ones) not being able to see and being away from home but again they went above and beyond for him.
I've also spoken to Dr.Fearon and thought he was patient and kind in answering all of my questions and not to mention he does beautiful work.He also has extensive experience with older kids.We were torn betweeen NY and TX but ultimately stayed closer to home.I hope this helped

[marisajo]

This is a tough one, and probably depends somewhat on your insurance/financial situation. You can start with you in-network pediatric neurosurgeon. Often, sagittal cases use just a ns. However, with it being an 18 month old, I'd probably lean more toward a team approach. The bones are a bit thicker/harder and may need more of a craniofacial surgeon's touch.

I think it also depends on whether there are any developmental delays that you believe are a result of the cranio. In that case I'd find an excellent ns. first and go from there (Dr Carson @ Johns Hopkins has an excellent reputation). If you're willing/able to go out-of-network, then Dr Fearon in Dallas is the craniofacial surgeon we chose for Zachary's 3rd surgery after some issues with our local plastic surgeon. He is wonderful about giving opinions after seeing pics/CT scans...very personable and open about answering any and all questions. They also have the benefit of an anthropologist on staff who takes more precise measurements and helps plan for surgery so that the right amount of correction can be done to give the best long-term result...a definite plus that most facilities don't have.

[three.little.boys]

Marisa- Interesting about the anthropologist. I thought all teams had this....yet another wonderful thing about going to Dallas!

[dannlark]

Man! That makes the boo coo bucks for this trip to Dallas to see Dr. Frearon worth every penny!! Well, that, and EVERYTHING else about their office and hospital and staff!!

Sorry, I digress... I agree, start with an in-network NS (your ped. should have a good recomendation) and go from there. I've found that it really is hit or miss with the Dr.'s (mostly miss with me) trying to find a good fit. That's why we're seeing Dr. Fearon. Good luck and keep us posted...

[nancy]

Thank you all so much. We are beginning our appointment scheduling process with Dr. Fearon. You are all very helpful.

[HaydensMommy830]

I felt comfortable with Dr Barcelo (also at Medical City-Dallas) b/c he was part of the team that separated the conjoined Egyptian twins!

[marisajo]

Sadie...Dallas is the only place I've ever heard an anthropologist mentioned in my 4+ years on this journey. I'm sure there may be others somewhere, but it's definitely rare. Definitely one of the deciding factors for us to go to TX...I know Dr. Fearon said they were in the publishing stages of a paper on the whole "how much overcorrection during surgery leads to the best long-term result" debate. I just think it's awesome that they are looking at how to get it right the first time, since we're all looking for the best aesthetic results for our kiddos without multiple O.R. trips.

Nancy...best of luck with Dr Fearon. I just don't think you can go wrong in Dallas...it seems like one big pediatric craniofacial mecca!

[HaydensMommy830]

I just don't think you can go wrong in Dallas...it seems like one big pediatric craniofacial mecca!

I second that, from Dr Fearon to Dr Salyer to Dr Barcelo to Dr Genecov...I think Medical City definitely houses some of the best!