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Thread: 14 year old son, trying to find solution without surgery

  1. #16
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    Feb 2012
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    Thank you so much, everybody. The shared information about tethering, VBS are very valuable. Yes, we did take MRI this month too. His doctor said MRI looks normal. But as you all suggested, we' be seeing more doctors.

    We live in central Orange county, we used to go to Mission Viejo to see doctor. Next week we'll head to UCLA hospital to see doctor Scaduto. After that, we'll see PT and get more discussions.
    Last edited by djjane; 02-16-2012 at 12:24 PM.

  2. #17
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    Quote Originally Posted by djjane View Post
    Thank you so much, everybody. The shared information about tethering, VBS are very valuable. Yes, we did take MRI this month too. His doctor said MRI looks normal. But as you all suggested, we' be seeing more doctors.

    We live in central Orange county, we used to go to Mission Viejo to see doctor. This Monday (2/13) we'll head to UCLA hospital to see doctor Scaduto. After that, we'll see PT and get more discussions.
    If you are interested in tethering, you will likely have to deal directly with Newton (or Betz) I think.
    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."

  3. #18
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    I believe that is correct, Sharon.
    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/

  4. #19
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    Nov 2010
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    San Diego, CA
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    djjane,

    Welcome to the forum. I'm sure you'll find a lot of info and support here.

    My daughter is a pt of Dr. Newton, mentioned above, so I wanted to just share: He is wonderful. He is truly a leader in the Scoli Field, is and has been part of many international research groups on Scoli, he speaks on the topic world wide, he often has international fellows with him to learn from him. Patients travel from all over the US and the world to see him. All this and he is patient and kind, makes my daughter and I feel as comfortable as possible (of course some visits have been better than others).

    When my daughter was first diagnosed, I felt so helpless, so overwhelmed and sad. I had the goal to get her to the best specialists. I'm a nurse so I asked everyone I knew in medicine, near and far, who we should see, who'd they recommend? I was ready to travel to LA, but found I didn't need to. We have seen Dr. Betz in Philadelphia, with Dr. Newton's blessing. They are actually friends, both innovators in the field.

    Tethering is something he's been researching and doing studies on for years. It is why he never embraced VBS. That's my only disappointment with him, actually.

    Follow your instincts to do what's best for your son and Best Wishes to you both.
    Resilience

    treated w Milwaukee Brace FT for 3 yrs
    currently 46 with 35 LL and 40 RT curves

    8 yr old diagnosed w Scoli 8/10 with 27 LL and 27 RT
    11/10 TLSO Full Time
    4/11 22 LL and 24 RT on waiting list for VBS at Shriners Phila
    12/11 curves still in the 20s but now has some rib cage changes from the brace
    VBS 4/25/12 with Dr. Samdani. Pre Op: 29 RT and 25 LL Post Op: 17 RT and 9 LL
    10/13: 15 RT and 10 LL

  5. #20
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    Nov 2010
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    This forum is amazing, you will find so many people who can give you the greatest advice who have been down that road you are traveling now. My son bounced back really quickly from his surgery, he was fused from T2-L2, my concern was the growing he had left to do (he's now 5'7"), but I also didn't want my son to continue to get worse. He's involved in sports and has been able to return full time to his competitive tournament baseball and is doing shot put this year at school with the track team. He also experienced No pain, but his breathing did start getting heavy the months before his surgery. We tried going to a chiropractor (in desperation to avoid surgery) and although it brought relief to his back, it of course did nothing to help his curve.

    Good luck in your searching.
    Angie Romero, Mom to Alex, Dominic & Marissa.
    Alex was fused from T2-L2 at the age of 12 on Dec 22, 2010
    By Dr. Hanson at Texas Children's Hospital

  6. #21
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    Quote Originally Posted by ARodsMom View Post
    My son bounced back really quickly from his surgery, he was fused from T2-L2, my concern was the growing he had left to do (he's now 5'7"), but I also didn't want my son to continue to get worse. He's involved in sports and has been able to return full time to his competitive tournament baseball and is doing shot put this year at school with the track team.
    That is great news! I know how'competitive those baseball tournaments can be so it's great to hear he was able to return to doing what I'm sure he loves.
    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/

  7. #22
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    Feb 2012
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    Some update. We've seen two doctors this week. Will go to see doctor next week.

    One thing confused me is from his Xray, some doctor said it is at risser sign 0, and some said it is at risser sign 4 even on the august 2011 version. Have you guys found it hard to read risser sign?

    We are also thinking to start the schroth exercise next week with PT.
    Last edited by djjane; 02-21-2012 at 05:51 PM.

  8. #23
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    Sorry djjane, I have no clue what the risser is all about. I'm sure someone on the forum can help you with that.

    mariaf, yes it's great that he still has baseball! But, he did pull a back muscle recently while in the cages taking a few swings. Hopefully it isn't an issue.
    Angie Romero, Mom to Alex, Dominic & Marissa.
    Alex was fused from T2-L2 at the age of 12 on Dec 22, 2010
    By Dr. Hanson at Texas Children's Hospital

  9. #24
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    Quote Originally Posted by djjane View Post
    Some update. We've seen two doctors this week. Will go to see doctor Skaggs next week.

    One thing confused me is from his Xray, some doctor said it is at risser sign 0, and some said it is at risser sign 4 even on the august 2011 version. Have you guys found it hard to read risser sign?

    We are also thinking to start the schroth exercise next week with PT.
    I would email both surgeons and ask them to look at the same radiograph. The Risser has to do with calcification along the iliac crest of the pelvis. I do not think it is possible for two experts to vary by 4 points so I am betting there is some confusion somewhere.

    Last, someone correct me if I'm wrong but the 0 is almost certainly correct and the 4 is almost certainly wrong when discussing a 14 yo boy.

    Check this out... this is consistent with the 0 figure being correct...

    http://www0.sun.ac.za/ortho/webct-ortho/age/risser.html
    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."

  10. #25
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    Jan 2007
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    Quote Originally Posted by Pooka1 View Post
    I would email both surgeons and ask them to look at the same radiograph. The Risser has to do with calcification along the iliac crest of the pelvis. I do not think it is possible for two experts to vary by 4 points so I am betting there is some confusion somewhere.

    Last, someone correct me if I'm wrong but the 0 is almost certainly correct and the 4 is almost certainly wrong when discussing a 14 yo boy.

    Check this out... this is consistent with the 0 figure being correct...

    http://www0.sun.ac.za/ortho/webct-ortho/age/risser.html
    I have to agree, a 0 and a 4 are too far apart to be a simple variation, one of the two made an error. Maybe one of the guys stopped in the hall to discuss another case on the way to your room and mentioned the number from the other case? It is almost impossible to make it very far without being repeatedly assulted with one question after another. I too would ask a follow-up question so you know where you stand with regard to remaining growth.

    Other than they finish their growth several years later than girls, I don't know much about boys, so I would guess he would be between 0 and 2.

    I think another person here has done some reading on the subject--was that you Ballet Mom?

  11. #26
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    Seattle, WA
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    Regarding rissers, my son had surgery at age 12 and his risser was probably a 0 or a 1, and within the short range of "normal" size for his age. Then after he'd only grown an inch or two after his surgery, and was still not quite 5'1", we were told that his growth plates were almost completely closed and he probably wouldn't grow more; I'm pretty sure that at age 14, his risser was a 4 or a 5. Now at age 16 1/2, he has not grown at all since age 14 and he's still not quite 5'1". When his hand/wrist was x-rayed at age 15 for a possible visit with an endocrinologist, we were told that his bone age was already 17, despite the fact that he was only 15. So I think that any risser # is possible for any age kid, although I know that my son's situation is probably very unusual.

    I hope you get the situation cleared up soon and can hopefully get on with finding alternatives to fusion surgery. I have to say though, that the surgery was so much better than the brace for my son. Although he is very short, he has a great attitude about it and doesn't let anything stop him from doing everything he wants to do.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  12. #27
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    Feb 2012
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    Thank you Laurieg6 and others for the update. I don't think not growing much after 14 is abnormal. My son is 5'8'' and 14 and half years old. He's not going to complain either if not grow any more.

    Laurieg6, in your signature you mentioned your son is still working on improving his posture. What exactly is that? Can you give me some advise? Every time when we visit doctors, they always said posture is not going to worsen your scoliosis though I don't like to hear that. I tried to ask my kid to sit straight, but he replied that the doctor said .... I guess I have to work hard.

  13. #28
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    Quote Originally Posted by hdugger View Post
    The higher Risser signs are (I think) mostly associated with facial hair/voice changes in boys. If your son hasn't had a voice change and/or facial hair, it's likely he's at a lower Risser sign.

    From googling, facial hair comes after peak growth velocity (and public hair before, in case you want to have a really intrusive discussion with your son )
    So that would mean that if a boy's voice hasn't changed yet, and he hasn't gotten facial (or public) hair yet, then he's likely to still have considerable growth remaining? I'd say that makes sense and seems to hold true in most cases.
    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/

  14. #29
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    Feb 2012
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    15
    Some update from me. Went to see doctor Skaggs. His measurement is 41 degree. He would not recommend surgery right now. The risser sign is about 1 - 2 (though it is told by the intern, Skaggs seems very busy himself).

    Keep doing the trunk rotation exercise. Stopped swimming.

    Might try schroth method. But seems it is hard to get a real grasp of how to do it. Lots of breathing techniques.

  15. #30
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    Quote Originally Posted by djjane View Post
    Some update from me. Went to see doctor Skaggs. His measurement is 41 degree. He would not recommend surgery right now. The risser sign is about 1 - 2 (though it is told by the intern, Skaggs seems very busy himself).

    Keep doing the trunk rotation exercise. Stopped swimming.

    Might try schroth method. But seems it is hard to get a real grasp of how to do it. Lots of breathing techniques.
    Hi djjane
    Just to give you some input on alternatives...
    My daughter, 10 yrs, discovered thoracic and lumbar curves each around 40 degrees last June. Been exercising ever since, Schroth daily. We were told in June that she needed surgery soon, offered us a September date for spinal fusion (even boasted about using the new grow rods). Suggested she should be as much as 50 - 55 degrees by xmas 2011.
    We achieved correction with exercise alone (December 2011). She now also wears a SpineCor brace. Obviously has much growth to come, it'll be a constant fight, don't know if we'll win, but we're doing what is best for our daughter.
    Regards to you and your son
    Tom
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

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