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  • #16
    Thank you Ed for Dr. Pashman's link, that is exactly the data I am looking for. A quick glance shows 24 AIS cases only 3 went to L4, most stopped at L1. Probably will see about an Xray consult regarding the length of my sons fusion.
    Mom to son with new straight spine 8/15/2013 T16, L16
    Pre op T65, L?
    diagnosed 2/21/13 T55, L42

    Comment


    • #17
      Originally posted by tampamom View Post

      Are there surgeons who focus on AIS primarily?
      Yes....

      Go ahead and read this material. This is Linda’s site.
      http://www.scoliosislinks.com/Specialists.htm

      and this....
      http://www.spineuniverse.com/treatme...-spine-surgeon

      The surgeon should have completed a spine fellowship program. A fellowship in scoliosis surgery. The leading centers would be places like

      HSS Hospital for Special Surgery....NYC
      http://www.hss.edu/files/SpineFellowship.pdf
      TCSC Twin Cities Scoliosis center Minneapolis
      http://tcspine.com/education/physici...owship-program
      UCSF University of California San Francisco
      http://orthosurg.ucsf.edu/education/...owships/spine/
      University of Washington St Louis
      http://www.ortho.wustl.edu/content/E...llowship-.aspx

      Now you can see how specialized and demanding this training is. USMLE scores must be high.......(United States Medical License Exam) This is the Federal test that Medical students must take 1/2 way through medical school. Scoring on this test, decides the path or direction a doctor can follow....and those that pursue have to have the highest scores in the nation. 2 years ago, 19,000 took that test along with my God daughter. She will be an MD on 05/17/13. I am very pleased.....(Big smiley face)

      I know, I like to bury people with links....(No shortage of reading material)

      It helps to have a full understanding.....

      Ed
      49 yr old male, now 63, the new 64...
      Pre surgery curves T70,L70
      ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
      Dr Brett Menmuir St Marys Hospital Reno,Nevada

      Bending and twisting pics after full fusion
      http://www.scoliosis.org/forum/showt...on.&highlight=

      My x-rays
      http://www.scoliosis.org/forum/attac...2&d=1228779214

      http://www.scoliosis.org/forum/attac...3&d=1228779258

      Comment


      • #18
        I hope I didn’t bog you down with too much....I know, that was a lot.

        Answering certain questions sometimes can take quite a bit of reading.....sorry.

        Ed
        49 yr old male, now 63, the new 64...
        Pre surgery curves T70,L70
        ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
        Dr Brett Menmuir St Marys Hospital Reno,Nevada

        Bending and twisting pics after full fusion
        http://www.scoliosis.org/forum/showt...on.&highlight=

        My x-rays
        http://www.scoliosis.org/forum/attac...2&d=1228779214

        http://www.scoliosis.org/forum/attac...3&d=1228779258

        Comment


        • #19
          Originally posted by tampamom View Post
          Thank you Ed for Dr. Pashman's link, that is exactly the data I am looking for. A quick glance shows 24 AIS cases only 3 went to L4, most stopped at L1. Probably will see about an Xray consult regarding the length of my sons fusion.
          Hi. The reason many fusions stop at about L1 is not because this surgeon is reluctant to fuse L curves. It is because many/most curves that progress to surgical range are just thoracic. It is a small mercy that the most prevalent curves (i.e., thoracic) are also the least onerous to fuse because there is little bending through the torso/rib cage that can be lost when fused. As I mentioned, the loss of motion through the torso is so small with a T fusion that my daughter could not remember if it was any different from before she was fused. I watched her try to bend to the side and I told her I thought it was somewhat less than normal range of motion but she has no way of relating to that. Basically she looks and feels normal. Same for the other kid. Huge win.

          Fusions are indicated for large, progressive thoracic curves because the upside is far greater than the down side. Fusion of double majors curves and lumbar curves can be more problematic. In those cases, it becomes critical to find a surgeon who will stand on his head (osteotomies, de-rotation maneuvers, etc.) to keep the fusion as high as possible if there is a structural TL or L curve. That's my opinion.
          Sharon, mother of identical twin girls with scoliosis

          No island of sanity.

          Question: What do you call alternative medicine that works?
          Answer: Medicine


          "We are all African."

          Comment


          • #20
            Thank you Ed, I love reading and researching. So I will get right on it. We do have a few doctors on our short list for consult. I am going to read your links and think about our sons situation. Here is how it stands:

            Lenke - in person appt end of this month
            Hey - did brief phone consult himself and wants to see bending Xrays. - Plan to go see
            Pushman - will do an Xray, MRI consult remote
            Nathan Lebwohl, MD - starting my research - Might try to go see, easy drive

            Starting to get there I guess. Luckily my son feels fine, great in fact. I just hope things aren't moving while we sort this out :/

            Thanks again!

            -Cecilia
            Mom to son with new straight spine 8/15/2013 T16, L16
            Pre op T65, L?
            diagnosed 2/21/13 T55, L42

            Comment


            • #21
              Yes, that is right Pook1, I misspoke in that Pashman's case studies were not all double curves. Good point. All lots of good points
              Mom to son with new straight spine 8/15/2013 T16, L16
              Pre op T65, L?
              diagnosed 2/21/13 T55, L42

              Comment


              • #22
                Excellent work! Dr. Hey wants to see bending films. Well what do you know? :-)

                Originally posted by tampamom View Post
                Lenke - in person appt end of this month
                Hey - did brief phone consult himself and wants to see bending Xrays. - Plan to go see
                Pushman - will do an Xray, MRI consult remote
                Nathan Lebwohl, MD - starting my research - Might try to go see, easy drive
                Sharon, mother of identical twin girls with scoliosis

                No island of sanity.

                Question: What do you call alternative medicine that works?
                Answer: Medicine


                "We are all African."

                Comment


                • #23
                  hi tampamom
                  perhaps you didn't notice it. but the resources link on the NSF website
                  home page allows for you to click on a specialty for the surgeons...
                  just click where it says "geographic and specialty info"...
                  something like that, and the specialty link will pop up...
                  will allow you to search by what the surgeon specializes in.

                  jess

                  Comment


                  • #24
                    Yeah, been there, it is certainly a good starting point. thanks.
                    Mom to son with new straight spine 8/15/2013 T16, L16
                    Pre op T65, L?
                    diagnosed 2/21/13 T55, L42

                    Comment


                    • #25
                      strange...
                      i went to "geographic and specialty search" (which is what it is called)...i typed in NYC, NO surgeons came up under adolescent for specialty...but several came up when i typed in Tampa FLA...
                      i wonder how that can be, as i know several of the top surgeons
                      in Manhattan operate on many many children/adolescents each year...

                      strange...

                      jess

                      Comment


                      • #26
                        That's true, Jess.

                        Dr. Vitale specializes in scoliosis surgery in children, Dr. Lonner in both children and adults, just to name two that pop into my head in NYC. Something is wrong if no names come up under that search. Hopefully, the moderators can fix this.
                        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


                        • #27
                          Hello Cecilia -
                          Are you going to see Geof Cronen in Tampa as well? I understand you're seeing some incredible surgeons, but please consider an appointment with him. He is right in Tampa, did his fellowship under Dr. Lenke, & was recommended by Dr Lenke to us for our son. We could not be any happier with the outcome, thank God & thank Geof!(Also - so very sorry, but I haven't been on the boards in months. I had no notification that you'd pm'd me until I got on tonight. Please check your emails).
                          Mom of 14yo son diagnosed Oct 2011
                          Surgery 1/3/12 w Dr. Geof Cronen,
                          Tampa General Hospital T3 to L1
                          Jacob's pre surg curves: T58 & L31 12/28/11
                          photos & xrays in "First-Time Surgery" thread "Before & After"

                          Comment


                          • #28
                            So glad to hear you are pleased with Cronen. When I called Shriners, he was book up until June, so we took an appointment with a Dr. Mason hoping he can get us to Cronen sooner. But I suspect Lenke can refer us to Cronen also.

                            Here are our Consults so far:

                            Dr. Neustadt 2/21
                            Dr. Hey 3/26
                            Dr. Lenke 3/27
                            Dr. Mason 4/9
                            Dr. Lebwohl 4/22

                            My husband and son are leaving tomorrow for the next 2 appointments. Hoping for good news on his bending Xrays tommorrow. I've typed up a four page set of questions and back ground info for my hubby to take with him. Using a combination of questions from on this board and the book "the Definitive Patients's Reference guide". Plus a bunch of notes on vertebra: neutral, stable, CSVL and PJK. So well see.....

                            This forum has been a wealth of information and encouragment, thanks everyone!
                            Mom to son with new straight spine 8/15/2013 T16, L16
                            Pre op T65, L?
                            diagnosed 2/21/13 T55, L42

                            Comment


                            • #29
                              Forgive my asking - but do you have insurance that would pay for his surgery? If so, I'd see if going w Cronen & Tampa General would speed things up, if you'd rather an earlier surgery. His office phone is 813-979-0440.
                              Mom of 14yo son diagnosed Oct 2011
                              Surgery 1/3/12 w Dr. Geof Cronen,
                              Tampa General Hospital T3 to L1
                              Jacob's pre surg curves: T58 & L31 12/28/11
                              photos & xrays in "First-Time Surgery" thread "Before & After"

                              Comment


                              • #30
                                Dr Lenke is probably THE top scoli surgeon in the country...
                                it used to be said that Lenke only took the "worst" cases...
                                do not know if that is true anymore...
                                if not, why not go with him??

                                best of luck...
                                jess...and Sparky

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