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Dr. Boachie, Dr. Flynn, or shriners PA. (for a toddler spine operation)?

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  • Dr. Boachie, Dr. Flynn, or shriners PA. (for a toddler spine operation)?

    Hello I am pretty new in this forum.
    my daughter is 2 years old. she has been diagnosed with congenital scoliosis and we are having a very hard time deciding for a surgeon. Dr. Boachie is a wonderful doctor and person but we are a little concern due her age. I have a feeling that the majority of his experience is in adults and teens., but then again, a 2 year old baby with congenital scoliosis and a 47 degree angle is very rare too.
    We are also considering dr. Flynn at CHOP or Shriners at Philadelphia
    Any thoughts or recommendations will be highly appreciated
    sincerely
    Elizabeth

  • #2
    Elizabeth...

    Where are you located?

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

    Comment


    • #3
      Originally posted by lizhedgepeth View Post
      Hello I am pretty new in this forum.
      my daughter is 2 years old. she has been diagnosed with congenital scoliosis and we are having a very hard time deciding for a surgeon. Dr. Boachie is a wonderful doctor and person but we are a little concern due her age. I have a feeling that the majority of his experience is in adults and teens., but then again, a 2 year old baby with congenital scoliosis and a 47 degree angle is very rare too.
      We are also considering dr. Flynn at CHOP or Shriners at Philadelphia
      Any thoughts or recommendations will be highly appreciated
      sincerely
      Elizabeth
      Have you seen all 3 of these doctors already? I really can't offer you much advise except that I wanted to tell you, when I had my consultation with Dr. Boachie last June, there was a toddler (patient) in his office who apparently he had been treating since birth. I know she had at least one surgery with him at that point. I think she was wearing a brace at the time as well, and she was toddling around like any normal little kid.

      Good luck with your decision.

      One more thing---if I were you, I'd outright ASK all 3 of the doctors how many toddler's they've done this type of surgery on. How else will you know unless you ask? They shouldn't feel offended.
      __________________________________________
      Debbe - 50 yrs old

      Milwalkee Brace 1976 - 79
      Told by Dr. my curve would never progress

      Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
      Pre-Surgury Thorasic: 66 degrees
      Pre-Surgery Lumbar: 66 degrees

      Post-Surgery Thorasic: 34 degrees
      Post-Surgery Lumbar: 22 degrees

      Comment


      • #4
        Thank you for your responses

        We are in California but we are willing to fly anywhere to get the best care possible. this is a big desition for us

        Comment


        • #5
          Originally posted by lizhedgepeth View Post
          Thank you for your responses

          We are in California but we are willing to fly anywhere to get the best care possible. this is a big desition for us
          Mohammad Diab at UCSF!
          Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
          ---------------------------------------------------------------------------------------------------------------------------------------------------
          Surgery 2/10/93 A/P fusion T4-L3
          Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

          Comment


          • #6
            you can most like go to shriners in northern california or in southern california
            Kara
            25
            Brace 4-15-05-5-25-06
            Posterior Spinal Fusion 3-10-10
            T4-L2
            Before 50T
            After 20T

            Comment


            • #7
              Originally posted by lizhedgepeth View Post
              Hello I am pretty new in this forum.
              my daughter is 2 years old. she has been diagnosed with congenital scoliosis and we are having a very hard time deciding for a surgeon. Dr. Boachie is a wonderful doctor and person but we are a little concern due her age. I have a feeling that the majority of his experience is in adults and teens., but then again, a 2 year old baby with congenital scoliosis and a 47 degree angle is very rare too.
              We are also considering dr. Flynn at CHOP or Shriners at Philadelphia
              Any thoughts or recommendations will be highly appreciated
              sincerely
              Elizabeth
              Hi Elizabeth,

              My experience has been with Shriners, Philadelphia. We first brought my son there when he was 5 years old, but they treat a large number of kids even younger than that. They do serial casting on infants, which perhaps isn't an option here because the scoli is congenital, but the fact that they have a casting program tells me they see a LOT of infants and toddlers. We've been going to Philly for over 5 years and I have seen infants and toddlers at just about every appt. we have been at. Hope this helps.

              We considered seeing Dr. Boachie as well when my son was initially diagnosed in 2000, because we had heard the name, but felt that he saw mostly teenagers as well as adults (revision surgeries, etc.).

              Dr. Flynn is obviously at a children's hospital. Although the only patients I know personally of his had fusions as teenagers, that doesn't mean he doesn't see a number of toddlers - I just don't have any personal knowledge about his practice - sorry.

              By the way, we have been extremely pleased with Shriners.

              Best of luck.
              mariaf305@yahoo.com
              Mom to David, age 17, braced June 2000 to March 2004
              Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

              https://www.facebook.com/groups/ScoliosisTethering/

              http://pediatricspinefoundation.org/

              Comment


              • #8
                Originally posted by LindaRacine View Post
                Mohammad Diab at UCSF!
                I should have been more specific. Dr. Diab treats only children, and has hundreds of them.

                --Linda
                Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
                ---------------------------------------------------------------------------------------------------------------------------------------------------
                Surgery 2/10/93 A/P fusion T4-L3
                Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

                Comment


                • #9
                  how about seeing dr lerman or dr gupta both at shriners in sacramento or dr gupta at uc davis spine center
                  Kara
                  25
                  Brace 4-15-05-5-25-06
                  Posterior Spinal Fusion 3-10-10
                  T4-L2
                  Before 50T
                  After 20T

                  Comment


                  • #10
                    Hi Elizabeth,

                    I am also a member of a congenital scoliosis yahoo group. Here is their email: CongenitalScoliosisSupport@yahoogroups.com

                    You might ask the question about doctors on there as well. Since you live in CA, one really great doctor I've heard about in LA is Dr. Skaggs. You can google him to find his phone number - I did recently and it appeared easily but I didn't write it down. Let me know if you have trouble finding him though and I can help. He's dealt with many really young kids with very complicated, congenital scoliosis from what I've been told.

                    Good luck,
                    Laurie

                    Mother of Alexander & Zachary:
                    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
                    Zach is 13 years old and very energetic.

                    Comment


                    • #11
                      I've heard of Dr. Skaggs' name as well in connection with infantile and juvenile cases.

                      In addition to the other places mentioned (Shriners in CA and Philly, etc.), another name that comes to mind is Dr. Vitale in NYC (who has a particular interest in early onset cases) and also the team at Children's Hospital Boston.
                      mariaf305@yahoo.com
                      Mom to David, age 17, braced June 2000 to March 2004
                      Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                      https://www.facebook.com/groups/ScoliosisTethering/

                      http://pediatricspinefoundation.org/

                      Comment


                      • #12
                        Looking for Dr's

                        Hello,
                        I am now trying to search for a doctor out of my state of Florida. If anyone has any suggestions of a doctor that deals with young (8) patients with a 60 degree curve, who has been braced for 2 years, please reply...we are desperate to figure out what we should do at this point. Thank you!

                        Comment


                        • #13
                          I'm not sure if I understood you - are you saying you now are looking for someone "in" Florida?

                          The closest doctor I know that fits this criteria is Dr. Timothy Oswald in Atlanta. From all accounts, he's one of the best and deals with lots of younger patients. His contact info is:

                          Dr. Timothy S. Oswald
                          Pediatric Orthopaedic Associates, P.C.
                          Atlanta, GA 30324
                          404-321-9900
                          http://www.mypedsortho.com
                          mariaf305@yahoo.com
                          Mom to David, age 17, braced June 2000 to March 2004
                          Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                          https://www.facebook.com/groups/ScoliosisTethering/

                          http://pediatricspinefoundation.org/

                          Comment


                          • #14
                            Dr's outside of Florida

                            Hello Mariaf,
                            I am sorry if that was confusing....I meant that I would like to go out of florida to get another opinion...my doc here has flip flopped on growth rods, he has said that yes, we should and then has said that he would not recommend them because of multiple trips back to the operating room. Now that her curve jumped 10 degrees in 3 months, I feel that time is of the essence. At this last appt. he said that he would order another MRI to make sure that he wasn't missing anything that could cause such an aggresive curve. But after that he said that he would see us in 4 months. So I really do not feel comfortable with this course of treatment.

                            Comment


                            • #15
                              No problem, Liz. I was confused because at first we were discussing docs out of the state of Florida so I didn't want to answer the same question twice

                              Anyway, in addition to some of the names that have been mentioned: Oswald, Skaggs, Vitale, Betz (who treats my son and is by all accounts one of the top docs in the country for this type of thing), the only other names that come to mind, where I have any personal knowledge of the surgeon(s) seeing a lot of younger kids, would be Emans and Hresko at Children's Hospital of Boston.

                              I don't think you could go wrong with any of the above doctors - they are all the cream of the crop.
                              mariaf305@yahoo.com
                              Mom to David, age 17, braced June 2000 to March 2004
                              Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

                              https://www.facebook.com/groups/ScoliosisTethering/

                              http://pediatricspinefoundation.org/

                              Comment

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