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  1. #1
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    14 year old son, trying to find solution without surgery

    My son's scoliosis measures about 50 degree now. It was 20 degree two year ago. We've been seeing doctor every 3 or 6 month. Now the doctor said only surgery can fix it.

    We've been doing swimming, exercises... and we tried PT and other things before. I am hoping to get some advise on what can we try to work on his situation. We really don't want to do the surgery. He's 14 years old, very skinny.

    We live in southern California, are there doctors out there trying alternative approaches?

    djjane

  2. #2
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    I agree that most doctors will talk surgery at 50 degrees. It's a really tough decision of whether to have surgery or not, and I'm sorry you're having to make that decision. I have a blog and video about my experience with scoliosis, bracing, and surgery, and I think it would help you. It includes information about a lot of things that I wish I would have known going through it all. But like many others on this site, I'm so thankful I had my surgery. Everyone is different, but I know that I had to come to the point where I was thinking about my future health, and what would happen if I didn't have surgery. Anyway, I hope you'll check out my blog if you get a chance. The link is in my signature. And I hope you get some answers for your son, and that he's doing well!
    Katie

    My blog: http://scoliosis-braceyourself.blogspot.com/
    My video: http://www.youtube.com/watch?v=8NG9hMohsU0

    5 Boston back braces
    Spinal fusion- Nov. 17, 2009, senior year of high school
    52 and 57 degrees pre-surgery, 22 and 20 degrees post-surgery
    Dr. Kim Hammerberg, Shriners Children's Hospital, Chicago
    Back into volleyball and music as a senior in college!

  3. #3
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    Thank you all for the replies and support. The curve is from T8 to L3.

    I've watched the youtube of Katie. You are an inspiration.

    My son does not have any pain of discomfort in his back. That's one of the reasons for us to be kind of undecided.

  4. #4
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    Quote Originally Posted by djjane View Post
    The curve is from T8 to L3.
    Here is what I would do were it me...

    1. Find out where the fusion would end if you have it done immediately.

    2. Ask your surgeon what are the long-term ramifications of being able to stop the fusion at L3 versus having to go lower.

    I can tell you there are testimonials on this group about surgeons who fused curves less than the trigger angle of 50* in skeletally immature kids SOLELY to save having to go lower into the lumbar. Ask your surgeon about why this is important.

    Good luck.
    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."

  5. #5
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    Oct 2011
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    Djjane, welcome to the forum. So sorry about your son's diagnosis. As you can see in my signature, our world changed over the past several months & we are thrilled to be on the other side of the surgery w our 14 yo son and heading down the path to recovery. All you can do is to research, research, research. Definitely check out the tethering and other options. We felt in our situation that there was no alternative due to the degree of his curve and knowing that he still has another 4-5" of growth to go, his situation would only get worse (he grew 5" in the past year alone); the longer one waits for surgery it seems the more painful, tougher the surgery, and possibly less effective it is. You're also very fortunate that he's not in pain; it actually is true that many of the scoli kids have pain. Our son had significant pain over the past year, and his activities were very much curtailed over the 2-3 months before surgery. Physical therapy helped tremendously. Feel free to message me if you'd like; Katie had wonderful advice for us as well a few other bloggers, and searching the forum is just invaluable. Good luck.
    Mom of 14yo son diagnosed Oct 2011
    Surgery 1/3/12 w Dr. Geof Cronen,
    Tampa General Hospital T3 to L1
    Jacob's pre surg curves: T58 & L31 12/28/11
    photos & xrays in "First-Time Surgery" thread "Before & After"

  6. #6
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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.

  7. #7
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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."

  8. #8
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    Jan 2007
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    228
    Quote Originally Posted by djjane View Post
    My son's scoliosis measures about 50 degree now. It was 20 degree two year ago. We've been seeing doctor every 3 or 6 month. Now the doctor said only surgery can fix it.

    We've been doing swimming, exercises... and we tried PT and other things before. I am hoping to get some advise on what can we try to work on his situation. We really don't want to do the surgery. He's 14 years old, very skinny.

    We live in southern California, are there doctors out there trying alternative approaches?

    djjane
    djjane,

    After I answered your question on my thread, I went looking to see if you were elsewhere on this site. I am sorry to say, they did not get good results on 40+ degree curves using the PT you were asking about. The folks who have already answered here are more knowledgeable than me, so I will step back and let them do what they do so well.

    A Mom

  9. #9
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    djjane,

    By the way, here is a blog maintained by an SRS surgeon about some of his cases. He is one of the surgeons who will fuse earlier and at smaller Cobb angles in order to be able to have a shorter fusion and presumably not get into countdown territory.

    http://drlloydhey.blogspot.com/

    All further questions you might have should be addressed to your surgeon.
    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. #10
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    Aug 2004
    Location
    ny
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    1,805
    djjane,

    Welcome - You have gotten some very good advice so far.

    While your son may ultimately need fusion surgery, and these kids do amazingly well, there is another procedure being performed by Dr. Peter Newton in San Diego called anterior spinal tethering which is a one-time, non-fusion surgical alternative that can be used for curves as large as 55 degrees. Tethering is sometimes suggested when a patient seeks a consult for VBS (vertebral body stapling) but is past the cutoff for VBS (35 degrees). Tethering is quite new, but so far the results have been good - I know of a few patients who have had tethering, including patients of Dr. Newton.

    Just trying to provide info on all available options.

    Best of luck and please keep us posted!
    Last edited by mariaf; 02-10-2012 at 01:57 PM.
    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/

  11. #11
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    Quote Originally Posted by mariaf View Post
    [...]there is another procedure being performed by Dr. Peter Newton in San Diego called anterior spinal tethering which is a one-time, non-fusion surgical alternative that can be used for curves as large as 55 degrees.
    Oh hey Maria I didn't know the limit was 55*! That is great! Lots of kids who missed the VBS window may qualify for tethering.

    I'll remember that and mention it in the future.
    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."

  12. #12
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    Aug 2004
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    ny
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    Hey Sharon,

    I just learned this (about 55 degrees being the upper limit) a few days ago from another parent - I guess it pays to ask questions!

    I knew that a lot of kids with curves too large for VBS (generally over 35 degrees) could be tethering candidates, but I had not been aware what the cutoff number was.
    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/

  13. #13
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    Where is the curve? If the lumbar it is less likely to progress than a thoracic curve. And you probably want to delay as much as possible fusing the lumbar anyway.

    That said, perhaps any 50* curve in a 14 yo boy is likely to continue progressing, I don't know. We do have a very few folks here on the forum who made it to 50* prior to skeletal maturity and then just hung there, sometimes for decades. But that seems rare.

    The surgeon will go through with you the balancing act of allowing more growth but not letting the curve get too large. PT can't hurt but there is no evidence it can help in cases like your son's unfortunately. That doesn't mean it can't. And I think bracing a 50* is clearly unethical as far as I know.

    Good luck.
    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."

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