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Thread: not sure what to expect

  1. #16
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    Sep 2003
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    north of boston, ma
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    122
    dawn,

    i know you asked carmell, but just the way that the report is written means that this ortho does not know how to deal with infantile/idiopathic or congenital scoliosis (referring to adolescent idiopathic scoliosis). you definitely need to get another opinion.

    my thinking structural = congenital, but you would think the ortho would have noted fused or hemi vertebrae or fused ribs from the x-ray.

    constitutional??? no idea

    yes, there are different categories of idiopathic scoliosis by age of detection -
    0-3 yrs infantile
    3-10 yrs juvenile
    10 - __ yrs adolescent

    hope this helps.

    deshea

  2. #17
    Join Date
    Aug 2006
    Posts
    369
    Dawn
    I agree with Desheah. My daughter is 6 with idiopathic juvenile scoliosis. Granted it is more common is girls than boys but there are juvenile boys on this forum with it.

    My advice is to get as many opinions from orthos that specialize in juvenile scoliosis as you can. And the parents on this forum are a HUGE source of info.

    My daughter is using Spinecor and having great results w/ 100% compliance

    Christine

  3. #18
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hi Dawn,

    These are my thoughts... FWIW

    First, is this report from the radiologist or an orthopedic surgeon? If this is what an orthopedist wrote, I'd be finding a second opinion sooner than later. The report is really of little value - there is no concrete information for you to go on. If the report was done by a radiologist (which is what I'm assuming) then don't get too worked up until you've talked with a pediatric orthopod who has actually seen the images.

    That being said, these are my opinions on your questions...

    1. Does "structural scoliosis" mean congenital or idiopathic?

    Structural typically means congenital. There is something structurally different about the makeup of at least one vertebrae, which is a congenital issue. Remember that the medical world is more an art than a science. The use of terms is not an exact science. Depending on who you are speaking with and what the references are, you may get very different input, but the same meaning. Not very clear and precise, but that's how things go, I've found. You can have 5 different "names" or "labels" for one condition. Doesn't change the condition itself or the proposed treatment plan, different people just call things differently.

    All that said, you need to find someone (pediatric ortho) who will show you the xray and tell you if there are structural abnormalities (congenital) or if the spine is formed correctly just curved (idiopathic).

    2. What is "constitutional scoliosis"?

    This goes back to my ramblings above - my guess is that this "doctor" who dictated the report is suggesting there are constitutional or environmental reasons for a curved spine. Very vague comment. Doesn't mean anything medically. For teenagers who have idiopathic scoliosis, some docs will document if there are any environmental factors that would constitute scoliosis - I'm guessing the doc doing the report likes to talk in circles. The report you posted means very little, technically (I've already said that).

    3. Aren't there several age group categories for idiopathic scoliosis?

    Deshea already listed these.

    My suggestion is to talk to a ped. ortho. who will explain this in English to you, after seeing the image. You really don't have much information to go on. You NEED to know more than what they are reporting. Do you have a ped. ortho. who will be reviewing this image? Do you have a followup to ask questions? He needs to be physically examined by a ped. ortho. - do you have an appointment for that?

    Good luck and let us know what you find out.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  4. #19
    Join Date
    Aug 2006
    Posts
    10
    Hi, Carmell! Thank you for taking the time to give me all of those details. You have been a wonderful help. This excerpt was taken from the report written by the Ped. Orthopedist who examined my son ( and looked at his xrays) at Children's. I don't know what the radiologist's report said. I'm waiting for a copy of his xrays to be sent to me.

    I called Shriner's in Erie today and am waiting for one of their "care specialists" to get back to me on Monday about setting up an appt. with Dr. James Sanders. They were very nice on the phone and I look forward to meeting with Dr. Sanders....do they only take extreme cases though? Not sure if they'll want to see a 4yr old with only a 20 deg. curve??

    Dawn

  5. #20
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    Dawn,

    They will take your case no matter the severity. You have made a good choice for your care.

  6. #21
    Join Date
    Aug 2006
    Posts
    10

    new concern for my 4 year old son

    Hi, everyone!

    We have an appt. for early November for my son to see Dr Sanders at Shriner's in Erie. The dr. does not want us to do an MRI until he takes a look at him then.

    He seems to have progressed as far as the scoliosis goes in the past week since I spoke with the care specialists at Shriner's. Is this possible? At the end of August when he had an x-ray he was at 20 deg. He has more of a "hunchback" appearance to me and is limiting (slightly - kind of a gradual turning...almost a careful movement instead of a natural one)how much he turns his head from side to side and will not tilt in backward; he'll look up at me with his eyes.He told me yesterday that the back of his neck hurt, and he wet the bed last night for the first time in about 1 1/2 years ( he has been night trained since he was 3 - he is now 4 1/2). I know to watch for bowel changes, what about bladder changes?

    I am trying not to be "overly hyper" and "overanalyze" things; sometimes it's hard to determine if you really have a concern??

    I am probably going to call Shriner's back on MOnday. Can anyone share any similar experiences...or have any words of wisdom to share?

    Thanks, Dawn

  7. #22
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    I would definitely call back if you are seeing changes that quickly...it can progress quickly for sure. My son stayed at around 26 degrees for several months and then - BOOM- he went to 36 degrees last October. Four weeks later in November he went to 43 degrees.

    If you are seeing bladder issues, that would definitely concern me. Sorry if this has been asked before and you already responded, but has he been checked for a tethered spinal cord? I know that can cause bladder issues.

    I'm surprised Sanders didn't want and MRI though. They wouldn't even look at Ian until I had sent them his MRI films and report.

  8. #23
    Join Date
    Aug 2006
    Posts
    10
    No, he hasn't been checked for a tethered spine. What other symptoms are there besides bladder changes? Anyone? Dawn

  9. #24
    Join Date
    Feb 2005
    Location
    Virginia
    Posts
    48
    Here are the symptoms:

    The course of the disorder is progressive. In children, symptoms may include lesions, hairy patches, dimples, or fatty tumors on the lower back; foot and spinal deformities; weakness in the legs; low back pain; scoliosis; and incontinence

    http://www.ninds.nih.gov/disorders/t...hered_cord.htm

  10. #25
    Join Date
    Mar 2005
    Location
    east coast
    Posts
    302
    Dawn,

    I have neurofibromatosis so I can answer any questions you may have... so ask away

    I'd definitely get your son checked out by an NF specialist, you can find one in your local area by going to www.ctf.org and click on "find an NF doctor" link.
    30 something...

    2003 - T45, L???
    2005 - T50, L31
    bunch of measurements between...

    2011 - T60, L32
    2013 - T65, L?

    Posterior Fusion T3 - L3 09/15/14

    Before and After X-Ray


  11. #26
    Join Date
    Oct 2006
    Posts
    1

    Update on Luke

    I am not Dawn, but she is a close friend of mine. Luke went in for his MRI on Friday (Oct 6). By the end of the MRI several neurosurgeons were in the room. To make a long story short, Luke had a tumor growing inside his spinal column. It was about 6 inches long. It ran from the cervical region down the thoracic region. They were able to remove most of it on Saturday (Oct 7). He is still at Children's Hospital in Pittsburgh. They will be getting the pathology report on Thursday. Please keep their entire family in prayer during this especially difficult time.

  12. #27
    Join Date
    Mar 2004
    Posts
    1,140
    Oh my gosh! My heart sank when I read this! Please let us know what happens and I'll be thinking of them and praying that the the tumor is benign and Luke makes a complete recovery.

  13. #28
    Join Date
    Sep 2003
    Location
    north of boston, ma
    Posts
    122
    charity's mom,

    thanks so much for the update. i'm so sadden to hear that it was one of those rare cases though! i am praying for luke, dawn, and their entire family. i hope that luke is recovering well from his surgery. please let us know how things are going . . .

    my best,
    deshea
    mom to lucas 6 1/2 yrs old with infantile scoliosis diagnosed at 18 mos 68o/45o;
    spinal detethering due to a tight/fatty filum at 22 mos;
    tlso and charleston brace from 18 mos to 2 1/2 yrs old at children's boston, ma;
    serial plaster casting from 2 1/2 until 4 1/2 at shriners in erie, pa;
    now in a spinecor brace at 21o/19o from montreal. next appt. sept 2008
    and ruby (3 1/2 yrs old and a handful!)
    north of boston, ma

  14. #29
    Join Date
    Oct 2005
    Location
    Grand Rapids, MI
    Posts
    313
    So glad to hear that they got Luke in earlier than November for the MRI and were able to schedule the surgery to remove the tumours so quickly!

    All our best wishes for his safe recovery,

    Deb
    age 47
    posterior surgery 7/24/07
    for S curve 70/76
    30 degree correction
    DON'T WAIT TO GET STRAIGHT!!

  15. #30
    Join Date
    Jan 2006
    Posts
    513
    Dawn,
    I know you don't know which way is up right now. I am so sorry that this was so catastrophic. I can't believe it.
    I am so glad you were so vigilant and persistent in getting Luke seen and cared for. I am so glad you trusted your instincts.I am grateful for these expeirienced women on this forum that knew enough to help you.
    They have helped me tremendously, too.
    Let us know as soon as you are able to, how you and Luke are doing.
    We will be praying for you.
    The kids and I pray together every morning and you will be on our hearts!
    Big Hug,
    Cheryl
    God has used scoliosis to strengthen and mold us. He's good all the time!On this forum these larger curves have not held forever in Spinecor,with an initial positive response followed by deterioration. With deterioration, change treatment.The first year she gained 4 or 5 inches and was stable at around 20/20 in brace, followed by rapid progression the next year.She is now 51/40 (Jan2008)out of brace (40/30 in Spinecor) and started at 38/27 out of brace(Jan2006.) Now in Cheneau.

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