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Thread: 15 month old needs surgery- we need information

  1. #1
    twinsmom Guest

    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. #2
    Join Date
    Mar 2004
    Posts
    1,140
    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

  3. #3
    Join Date
    Apr 2005
    Location
    houston,texas
    Posts
    11

    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!!

  4. #4
    Join Date
    May 2004
    Location
    Calgary, Alberta, Canada
    Posts
    29
    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

  5. #5
    twinsmom Guest
    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.

  6. #6
    Mary Lou Guest
    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

  7. #7
    Join Date
    Mar 2004
    Posts
    1,140
    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

  8. #8
    twinsmom Guest
    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!

  9. #9
    Join Date
    Mar 2004
    Posts
    1,140
    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

  10. #10
    Join Date
    May 2004
    Location
    Michigan
    Posts
    75
    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 at 11:43 AM.
    Live long and prosper!

  11. #11
    Join Date
    Jan 2005
    Location
    Northeastern Oregon
    Posts
    515
    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

  12. #12
    Mary Lou Guest
    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 Mary Lou; 05-11-2005 at 11:23 AM.

  13. #13
    Join Date
    Mar 2004
    Posts
    1,140
    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 at 11:16 AM.

  14. #14
    twinsmom Guest

    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!

  15. #15
    Mary Lou Guest
    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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