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Concerned Mom

RondaRRonda Posts: 11
edited 06/11/2012 - 8:42 AM in Scoliosis
My 16 year old daughter has just been diagnosed with Scoliosis. She's been checked at school for Scoliosis, had cheerleading physicals every year and it was never found. She started experiencing back pain and we took her to the doctor for it. On examination they discovered that she had scoliosis with Spondylolisthesis of L3/L4, L4/L5, L5/S1. Narrowing of those disc as well. Her spine has already formed an S. Her hip is already almost 2 inches higher than the other one. This is something that has progressed quickly her doctor said. She has constant lower back pain. Her back just this week has started hurting in the thoracic region. I have no clue what is best for her, I know I want her pain to be gone. We have an appt. at the Shriners Hospital this week. I mainly wanted to know if there is any questions I should be asking the doctors? I was hoping that since you've all been in her shoes you would have words of wisdom that we can not grasp in our state of shock.


  • hi and welcome to the forum! :H we are here to offer you support and answer what questions we can. you are very wise to be doing some research and preparing some questions for your visit. =D> this will ensure you get the most out of your first visit as you can... make sure you are well aware of her condition and what it is and means to her body. it sounds like you have a good grasp on that. :D do your homework, you will find all kinds of info on the site about her problem and form your questions from there. good luck and please stop by anytime. i am sure some members are going to come up with some good questions. Jenny :)
  • Although I was diagnosed at 13 with scoliosis, this was the 60s and many things have since changed. So I'm not familiar with treatment of teenagers with Scoliosis, however, you will need to have your daughter's x-rays evaluated by an experienced surgeon specialising in scoliosis in teens. Some surgeons will not operate unless her Cobb angle is over 40 and sometimes, 50 degrees. But her pain should be the guide. Teenagers do very well with the surgery and are often back at school in 6 weeks.

    Your questions will depend on whether she's eligible for surgery. At 16 she's probably stopped growing so is unlikely to be a candidate for bracing.

    Hopefully other parents of teens with scoliosis will come along and be more helpful than me, because it's quite different dealing with it at my age. The very best of luck to you both.
  • Hi,

    First let me say welcome to spine-health. Sorry to hear about your daughter. Shriners is a good place for kids though. You might want to check out the video section and watch the video on it. http://www.spine-health.com/video Also you can look at this link preparing to meet with a spine surgeon http://www.spine-health.com/treatment/back-surgery/preparing-meet-a-spine-surgeon-or-spine-specialist. Then also here is a list of questions to ask about surgery not that I am saying she needs surgery just to help you formulate questions http://www.spine-health.com/blog/neck-pain/38-questions-ask-your-surgeon-having-back-surgery.

    Hope that helps some and keep us posted. Good luck at the doctors. Once again welcome. Take care.
  • Frustrated and don't have a clue what to do. Drove the 4 hours to the hospital, was told we might not see a doctor because he'd been in surgery all morning. When I questioned this he later came in. Talked over me the whole time I tried to ask questions and would turn and give me a reprimanding look like I was a second grader talking out loud in class.It's at a 41 and they don't recommend surgery until 45 so hers is a mild case he said. He says she is done growing so it will not get any worse than it already is.
    I tried to explain to him that this is something that has just showed up within the last 6 months-year. He wouldn't listen to what I was saying.
    I had the x-rays that were taken in Jan. with me so they could compare them to the ones taken this week. I ask him if there was any change. He said an insignificant amount, nothing to raise a red flag or be concerned about. I again tried to tell him the x-rays were just taken in Jan. and this was March so thats just 2 months. AGAIN he talked over me and would not listen.
    IF its not going to change because she is "done growing" then why was there ANY change at all in the x-rays over just a 2 month period?
    I'm at my wits end, I don't know what to do. She is having to take pain medication for her back pain in her lower back and the thoracic region. She can't just continue at the age of 16 to take pain meds the rest of her life.
  • Some of us seek opinions from 3-4 or more doctors before we find a doctor we are happy with, and who we feel confident in. That doctor didn't give you any options or answer your questions and sounded quite arrogant. Is he a scoliosis specialist, specialising in teens? If not, this is who you must see. There is a list of NSF acredited scoliosis surgeons in the US, somewhere, you might try Google. Look for one specifically treating teens.

  • Oops this post just doubled up.
  • This doctor was a Scoliosis specialist who works in the Shriners Hospital and a Children's Hospital. I don't know if we just hit him on an off day or what. I'm just concerned about the suddenness of the Scoliosis and the pain. I know she can't continue like this the rest of her life as I guess he thinks she should.
    She also has a 1.2cm anterior Spondylolisthesis of L5 & S1 with Spondylolysis at L5 & S1. With narrowing of L3/L4, L4/L5, L5/S1 intervertebral disc space.
    I know compared to some people curvature 41 is not bad but its just the suddenness of it that is so concerning to me.
  • A cob angle of 41 if the scoliosis has only just happened, sounds a lot to me. Scoliosis is often undetected until it becomes quite obvious. As for pain, some people with small curves suffer more than some people with large curves.

    Anyway, I would not be happy with that particular surgeon. I am sending you a PM.
  • back in 1975 when I was 15 I was also told that my scoliosis wouldn't get any worse as I had quit growing - then in 2009 I had a 9 hr surgery
    because my curves were progressing so rapidly
    had a rib removed, a discectomy & 2 curves
    corrected going in through the front & the back

    they told me I was getting so much worse so fast
    my spine was pushing everything out of place

    I suspect you may get a different opinion from a different surgeon - I'm so sorry that you had such an upsetting trip - the right Dr. will help her,
    I'll be thinking good thoughts for you guys
  • The end of growth only indicates that bracing would be pointless. Very few curves seem to stop progressing at that point. Mine didn't move until my late 40s, then progressed increasingly rapidly through my 50s. I've read of many people with a similar experience.
  • Thank you for all your information and help. I've noticed within this last week that shes starting to get knots up in the thoracic region and has started complaining of her upper back hurting as well. I am going to try and get her into another Children's Hospital for our 2nd opinion. She can't continue just taking pain meds and nothing being done. Pretty soon those pain pills won't help then she'll be taking a stronger one and it will be a continuous chain. I don't want a 16 year old addicted to pain meds. I'm just so frustrated and worried and at my wits end.
  • I know you must feel just frantic to get the answers I sure feel for you & your daughter. Hang in there, there will be a Dr. with the right fit for you guys & they will help - thinking of you - Susan
  • you are right to be concerned! =D> good for you for being assertive and getting a second opinion.. you sound like a strong lady and i know you are doing all you can for your daughter!! good luck and don't stop till you are satisfied with the answers and the solution!! Jenny :)
  • Sense it was a shriners hospital you can make a call to the hospital ombudsman program or a patient advocate program and talk to them about the treatment you received. While you don't want to go back to this surgeon, they more than likely will have another surgeon whom you can see. They are not to happy to have complaints in their facilities, so they may even speed up the process of getting you to another doctor. Good luck and keep us posted.
  • Rotation of the spine was mentioned after MRI over a week ago. Still haven't got to talk to the Dr. or had anyone explain to us what this means. Has anyone been told this and what did it mean?
  • Yes rotation of the spine is common in scoliosis. Mine rotated anti-clockwise and caused my ribs at the back to rise out on the left hand side (I had a left-curving scoliosis.) This is called a rib hump. Mine was completely eliminated by de-rotation during surgery. My rib hum didn't show until my late 40s, but it can appear in the teens.
  • Our family doctor requested the MRI diagnosis reports from Shriners. We had the test Monday April 12th and still have not heard from the hospital or Shriners. I've called for 2 days now and left phone #'s where I could be reached wanting to know if they've found out anything yet. They called and left a message on the answering machine stating the doctor had not looked at the results yet. The case worker said that it showed she had a minor dislocation of a disc.
    I got a copy of the MRI diagnosis report from my family doctor but it doesn't make sense to me. They did a MRI of her lower back alone wanting a closer look at 2 disc that they said looked herniated. The report findings say 32 degree levoscoliotic curve of the lumbar spine with a 23 degree dextroscoliotic curve of the dorsal spine. There is a 63 degree dorsal kyphosis. There is a Grade II spondylolisthesis with L5 anterior and S1 by about 1.5cm. Probable neural large defect at this level(L5)
    The x-ray said there was curvature of 33 thoracic and 41 lumbar. Is that a totally diferent reading than the 32 and 23 listed on the MRI?
    I'm sorry I'm such a pest bothering you all with these questions. BUT this doctor spent 15 minutes with us and hasn't told us anything. Hes not concerned about it BUT I AM.
    I see her everyday and I see the drastic change it is making rapidly. Still waiting for an appt. with the Children's Hospital for our second opinion. If you understand any of the Greek from the MRI report I'd appreciate some insight please. Thank you.
  • First of all, Google spondylolisthesis. Others here might be able to help you with that as well. I know it's fairly common but causes pain but am unsure exactly what it is. I can tell you that levoscoliosis is left curving and I assume dextro means right curving. Kyphosis is a type of scoliosis that curves outwards, as opposed to scoliosis that curves sideways. You might Google neural defect as well. I don't know why none of your doctors appears to be concerned about any of this. I certainly would be if it was my daughter. I bet they would if it was their daughter too.
  • My daughter this weekend started complaining of a major annoyance. She said its like her spine itself is itching deep inside. Said its nothing she can reach on the skin its like its coming from within. She said it didn't hurt was just a constant annoying feeling. Has anyone else experienced this, is it normal? Has anyone explained to you what it could possibly be?
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