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  • 15 month old needs surgery- we need information

    I have twins.... boy/girl. I know... Not really, they're great for each other. My son, Brayden has been diagnosed with scoliosis since he was 4 months old. Nothing has been done up to this point (except tests- MRI, CAT scan, ultrasounds, etc) because the Dr.s we've seen said it wouldn't get worse. In 6 months, his curve has gone from 28 to 32 degrees and he's formed a compensatory curve the same degree. He's been climbing, running, generally driving me crazy for months now. His surgery has been scheduled for spinal fusion in June and we've been told he'll be in a Minerva brace to maintain the surgery. He (fortunately) doesn't have any other problems. What can we expect? How much pain will he be in? Will he be able to sleep at night? How long is the general recovery time? Any information you can pass on would be extremely helpful. We're worried of course but know it's for the best. Please feel free to email me at home as well. Thank you!

  • #2
    Twinsmom,

    I don't understand why your doctors are planning spinal fusion if your son's curve is only 32 degrees. Does he have congenital or idiopathic scoliosis ? If he has idiopathic, I don't understand why they would order a cat scan - so it must be congenital ? Spinal fusion is a very serious operation, the vertebrae that are fused will stop growing. Many people see surgery as a cure all, not so with spinal fusion in a very young child. Has your doctor discussed with you the consequences of spinal fusion ? I don't want to scare you but you should know before hand that your son's torso will not grow to its full potential and consequently depending on how much fusion is done, internal organs can become compromised ( i.e., lungs and heart will continue to grow in a short torso ). Most scoliosis specialists try to hold off surgery in young children until the spine has grown to a sufficient size. Have you sought out a second opinion ?




    Celia

    Canadian eh
    Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

    Comment


    • #3
      Whoa!!!

      I agree w/ Celia, my ortho. said that you should never have surgery on such a small child. First there is other options that should be tried first. Always get a 2nd opionion ( most insur. co. will pay for it) , he will have the problems celia talked about. Please seek out a 2nd option and do what's best for your son. We are all hear to listen and give you OUR advise. Please note we are not your son's DR. just other concerned parents. Best of Luck!!

      Comment


      • #4
        Please, please, try to get another opinion before having this surgery. Fusion surgery, for such a young child, is usually only done as a last resort. There are other options out there. When you have time, please let us know a little more about Brayden's scoli, like whether it is idiopathic, or congenital, ect. We will be praying that you can find the right treatment for your son!
        Cathy

        Comment


        • #5
          He has congenital scoliosis with a hemi vertebrae. We have been to Pittsburgh Children's (Not recommended), Syracuse and now Hershey Pediatric. The Dr. we see is a pediatric orthopod. We were last told (although we wait to hear more after the most recent CAT scan) that he also has Klippel Feil Syndrome (sp?). It is a very mild condition. They plan to fuse the two vertebrae only. and it is in his thoracic spine which doesn't bend much. The curve is getting worse quickly so we obviously want to put an end to that soon but on the other hand, we want to do what's best for him.

          Comment


          • #6
            twinsmom,

            May I ask what doctor you are seeing at Hershey? If you are seeing Dr. Lee Segal, that's great. If you are not, may I suggest you try to get an appointment with him. He is awesome. He did my daughter's surgery five months ago and we were very pleased. If you have any questions about Hershey, please ask. Also, my daughter and I are in the process of starting up the support group at Hershey again. If that is something you'd be interested in, please let me know.

            Mary Lou

            Comment


            • #7
              Twinsmom,

              I recently heard about a procedure called temporary spinal fusion. Its new, instead of fusing the vertabrae together, they use two small plates and four screws to stop the spine from growing in the direction its growing in. If it works, they go in and remove the hardware. I don't know if your son would be a candidate for such a procedure. I have yet to read the article which mentions this procedure in the Jounal of Bone and Joint Disease. I'm still waiting for the citation and issue number so that I can look it up. If anyone has come across this article, let us all know.



              Celia

              Canadian eh
              Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

              Comment


              • #8
                Yes, we are seeing Dr. Segal. We are looking to find more information before we result in surgery. We're seeing him May 23rd and surgery is scheduled for June 10th. We are so close to John's Hopkins that we are looking into getting him in there for a second opinion. Does anyone have any information on who to call there? We know something should and want something to be done soon but we're afraid that surgery is too drastic now. Oh boy, this is tough... when did I become so responsible for this? It's one thing when it's you... totally different when it's your kids depending on you to make the right decision for them. Oh yeah... we are moving to the York area but would be interested in a support group near here for sure. Thanks!

                Comment


                • #9
                  Twinsmom,

                  I saw your other post about locating a doctor for a second opinion. I did a search on the Scoliosis Research Society and I came up with the following doctors. Hopefully there is one close to you. Note that doctors listed on the Scoliosis Research Society have to meet certain criteria to be members. Good luck !

                  Todd J. Albert, MD
                  Rothman Institute
                  267-339-3512
                  Thomas Jefferson University Hospital
                  925 Chestnut St, 5th Fl
                  Philadelphia PA 19107-4216
                  http://www.rothmainstitute.com
                  Adult Scoliosis, Aging Spine

                  Richard A. Balderston, MD
                  Pennsylvania Hospital
                  (215) 829-2222
                  800 Spruce St
                  3B Ortho
                  Philadelphia PA 19107
                  http://www.3bortho.com
                  Adolescent, Adult Scoliosis, Aging Spine

                  Randal R. Betz, MD
                  Shriners Hospital
                  (215) 430-4026
                  3551 N Broad Street
                  Philadelphia PA 19140-4105
                  http://www.shrinershospital.org
                  Adolescent, Neuromuscular

                  Linda P. D'Andrea, MD
                  Shriners Hospital for Children
                  215-430-4140
                  Med Staff Offices, 8th floor
                  3551 N Broad Street
                  Philadelphia PA 19140
                  http://www.shrinershq.org
                  Adolescent, Juvenile/Infantile

                  Vincent F X Deeney, MD
                  Children's Hospital of Pittsburgh
                  (412) 692-5530
                  Dept of Orthopaedics
                  3705 Fifth Avenue
                  Pittsburgh PA 15213-2583
                  Adolescent, Juvenile/Infantile

                  William F. Donaldson III, MD
                  University of Pittsburgh Physicians
                  (412) 605-3218
                  Ortho Surgery, Kaufmann Medical Bldg
                  3471 Fifth Avenue, Suite 1010
                  Pittsburgh PA 15213
                  Adult Scoliosis, Aging Spine

                  John P. Dormans, MD
                  Children's Hospital of Philadelphia
                  215-590-1527
                  Division of Orthopaedic Surgery
                  3401 Civic Center Blvd
                  Philadelphia PA 19104-4399
                  http://www.webstage.chop.edu/consume...f_profile_page
                  Adolescent, Juvenile/Infantile, Pediatric, Tumors

                  Malcolm L. Ecker, MD
                  Children's Hospital of Philadelphia
                  (215) 590-1527
                  34th & Civic Center Blvd
                  Philadelphia PA 19104
                  Adolescent, Juvenile/Infantile

                  John M. Flynn, MD
                  Children's Hospital of Philadelphia
                  215-590-1527
                  Richard D Wood Bldg-2nd Fl
                  34th St and Civic Center Blvd
                  Philadelphia PA 19104-4399
                  http://www.chop.edu
                  Adolescent, Juvenile/Infantile

                  David R. Kraus, MD
                  (412) 782-3990
                  200 Delafield Rd, Ste 1040
                  Pittsburgh PA 15215-3205


                  Stephen A. Mendelson, MD
                  Children's Hospital of Pittsburgh
                  412-692-5530
                  3705 Fifth Avenue, Suite 3330
                  Pittsburgh PA 15213
                  Adolescent, Juvenile/Infantile

                  Peter D. Pizzutillo, MD
                  St Christopher Hospital for Children
                  215-427-3131
                  Orthopaedic Center for Children
                  Erie Ave at Front St #133-1
                  Philadelphia PA 19134-1095
                  Adolescent, Juvenile/Infantile

                  James O. Sanders, MD
                  Shriners Hospitals for Children
                  814-875-8700
                  1645 W. 8th Street
                  Erie PA 16505
                  Adolescent, Juvenile/Infantile

                  Lee S. Segal, MD
                  The Milton S. Hersey Medical Center
                  771-531-4805
                  PSU College of Medicine, Dept of Ortho
                  PO Box 850, MC H089
                  Hershey PA 17033-0850
                  http://www.hmc.psu.edu
                  Adolescent, Juvenile/Infantile

                  Alexander R. Vaccaro, MD
                  Rothman Institute at Jefferson
                  (267) 339-3623
                  925 Chestnut Street, 5th Floor
                  Philadelphia PA 19107-4216

                  David M. Wallach, MD
                  Milton S. Hershey Medical Center
                  (717) 531-4800
                  500 University Dr.
                  Department of Orthopedics and Rehab
                  Hershey PA 17033-0850

                  W. Timothy Ward, MD
                  (412) 692-6868
                  Orthopaedic Surgery
                  3705 5th Avenue
                  Pittsburgh PA 15213-2524

                  Canadian eh
                  Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                  Comment


                  • #10
                    This is a difficult question and a very difficult decision for any parent, I hear your concerns and feel your worries. My daughter and myself were both born with scoliosis, and both had surgery at what I consider at a young age. My own experiemental surgery (total fusion) was completed in 1954 at the age of four years old. My daughters surgery was performed at the age of twelve, and please remember that your childs spine is still growing at this age and will be for some time. Corrections can still occure while this is happening by utilizing braces, so unless it is life threatening or the individuals quality of life is threaten by severe scoliosis. Then surgery should and must be the last option. My daughter wore a brace for many years, and some correction was identified, but surgery was still required later in her life but not as severe as first expected. Please think about a second opinion, and not so fast with the surgery....and my daughter has Klippel Feil Syndrome.
                    God Bless.
                    Last edited by Danite; 05-09-2005, 10:43 AM.
                    Live long and prosper!

                    Comment


                    • #11
                      Twins Mom,

                      I understand Drs. Betz and D'Andrea are excellent doctors. You may want to get a second, third, fourth from them. They are with Shriners Hospital and it won't cost you or your insurance anything. May be worth the look. We use Shriners Hospital in Portland and are totally pleased with the work they have done on our daughters. I have read lots of good posts about these two doctors.

                      'til later,
                      Nikki

                      Comment


                      • #12
                        Twinsmom,

                        I agree with Nikki, Dr. Betz and Dr. D'Andrea are excellent doctors. We saw Dr. Betz in July of last year and Dr. Segal in August of last year and I told Dr. Segal that we just saw Dr. Betz. He asked me why we were coming to him instead. He said we were in excellent hands with Dr. Betz. I agreed with Dr. Segal, we were in excellent hands with Dr. Betz. However, Jamie is going to a neurologist later this month to be tested for CMT, which is a condition that runs in my husband's family and sometimes causes Scoliosis/Kyphosis and Dr. Segal was the most knowledgable about the condition. That's the main reason we ultimately chose Dr. Segal over Dr. Betz.

                        Mary Lou
                        Last edited by ; 05-11-2005, 10:23 AM.

                        Comment


                        • #13
                          Dr. Betz is also current president of the Scoliosis Research Society. Not that this should have any bearing on your decision.




                          Celia
                          Last edited by Celia; 05-11-2005, 10:16 AM.

                          Canadian eh
                          Daughter, Deirdre born Oct 2000. Diagnosed with 60 degree curve at the age of 19 months. Serial casting by Dr. Hedden at Sick Kid's Hospital. Currently being treated by Dr. Rivard and Dr. Coillard in Montreal with the Spinecor brace and curve is holding at "2" degrees. Next appointment 2008

                          Comment


                          • #14
                            latest news on 15 month old son

                            My husband and I have been reading all of your posts and frankly- panicking! The scheduled date for surgery is just around the corner. We are also in the process of buying a new home and we close and move in Memorial Day weekend- Brayden's surgery is scheduled for June 10th No stress here! Anyway, we have been planning on calling Shriner's next week. We were on the way home this evening and an ad came on the radio. Shriners is doing a clinic in Reading, PA next weekend. That splits the difference to where we would normally have to go. We have appreciated all of your responses and have taken them so much into consideration that we called to find out where and when for next weekend. We've done some research as well and found so much on non-fusion solutions through them that we have hopes. It just so happens that it is only 2 days before we are supposed to meet with our current Dr. Hmmm.... guess I don't need to be hit with lightning to know that we are "supposed" to be there. Have to say it's quite the coincidence. Please keep your fingers crossed that he doesn't need the fusion and I will keep you updated. Thanks so much for all of your help!

                            Comment


                            • #15
                              twinsmom,

                              I am so glad you and your husband are checking into every possible option before going ahead with surgery. I feel completely comfortable with "our" doctor but like I've said before, this doctor was our fifth opion before we agreed to surgery for my daugther and the first doctor we ever saw recommended surgery. Surgery is not something to rush into, especially with a baby. Good luck next weekend.

                              I sent you a private message about the support group. Did you get it?

                              Mary Lou

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