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Thread: New Here w 15 y/o 29% curve

  1. #1
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    Jul 2012
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    New Here w 15 y/o 29% curve

    I'm super new to this so thought I'd introduce myself. I'm still in the researching stage. Six months ago, my son was diagnosed with scoliosis with a 21% curve. He actually has an S curve and I'm not aware of the percentage of the other curve yet. Last week, his x-ray showed a 29% curve, so that's 8% in six months! . He did have a huge growth spurt, so hopefully it will slow down now. We've been referred to an orthopedic surgeon and have been told a brace will most likely be recommended. He's fairly ok with that, but I know it will kill his self esteem...which is already lower than it should be. It seems to be effecting the way he stands and walks now and he has back pain every single day.

    What I'm having the hardest time with right now is finding an orthopedic surgeon. The one we were sent to, in town here, specializes in knee replacements so I'm not sure how comfortable I am with his knowledge of spines. I figure we'll meet with him and take it from there. I know how important it is to have a good doctor so I'm super nervous about that part!

    Jen

  2. #2
    Join Date
    Aug 2004
    Location
    ny
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    1,809
    Hi Jen,

    Welcome.

    I would strongly recommend that you find a pediatric scoliosis specialist. Even though you are new to this, your intincts are correct about not being comfortable with a knee specialist to treat your son's scoliosis. As someone who has been around the scoliosis world for a decade (others here have been around even longer), I can tell you that a doctor who specializes in knee replacements is not who your son should be seeing.

    Can I ask what part of the country you live in? There are lots of excellent doctors who specialize in treating children with scoliosis and nothing else. I am confident that we can give you some good recommendations right her on this site. If you have a Shriners hospital nearby, that would be a good option but fortunately there are lots of specialists to choose from no matter where you live.

    Best of luck to you and your son.
    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/

  3. #3
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    Jul 2012
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    Thanks so much! We're about an hour outside San Francisco. I haven't made the appointment yet, I keep stalling this week because I'm just not comfortable with someone who doesn't specialize in scoliosis, even if they are up the street rather than a long drive away. I also have to be able to find a doctor in the blue shield network or Adventist Health hospitals in the Napa valley. No shriners close to here, unfortunately.

    I've been reading about VBS a little and it seems he would be a good candidate for it, but I need to do more research on that as it is still surgery and a tad scary. However, if his back keeps progressing quickly..... sigh.

    Wait, it looks like there might be a Shriners in Sacramento?
    Jen

  4. #4
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    Aug 2004
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    ny
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    Jen,

    I just sent an e-mail to my contacts at Shriners asking who "the" scoli doc to see in Sacramento would be if you decide to go that route.

    I do not believe they perform VBS at the Sacramento Shriners Hospital but we don't even know at this point if your son would be a candidate. If he's almost done growing he might be able to get away without any type of surgery (so long as he does not continue to progress - and progression should hopefully stop, or at least slow down, if he's past the big growth spurt). The main thing now is to get him seen by someone who is an true expert in this area.

    In any event, the doctors at Shriners Hospitals work with each other - and also with doctors outside the Shriners system - so if you wanted to pursue VBS in the future, that won't necessarily be off the table if you start out in Sacramento.

    I'll let you know when I have additional information. Feel free to e-mail me with any questions as well.
    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/

  5. #5
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi Jen,

    I agree completely with Maria that your son needs a pediatric spine specialist.

    Dr Diab at UCSF comes highly recommended by a number of families in your area, and he would certainly be well-qualified.

    Best of luck,
    Gayle, age 49
    Oct 2010 fusion T8-sacrum w/ pelvic fixation
    Feb 2012 lumbar revision for broken rods @ L2-3-4
    Sept 2015 major lumbar A/P revision for broken rods @ L5-S1


    mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
    5/10 VBS Dr Luhmann Shriners St Louis
    5/16 6 yrs post-op, 24*T/ 22* L, mild increase in curves, watching

    also mom of Torrey, 12 y/o son, 16* T, stable

  6. #6
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    ny
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    Yes, Dr. Diab would be another great choice provided he is in Jen's network - although I believe Blue Cross Blue Shield is widely accepted.
    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. #7
    Join Date
    Jul 2012
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    Thanks so much! This is all so overwhelming at first, now I have some ideas in directions to go for doctors.

    He did just have a huge growth spurt over the summer, so hopefully that is what caused the 8% increase in the curve and it will slow down now. He's 15 1/2 so not quite done growing yet.
    Jen

  8. #8
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    ny
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    I was told that any of the spine guys in Sacramento would be good choices (I'm not sure how familiar my East Coast contacts are with the staff there on an indivdual basis but the reputation of that hospital in general is excellent so you can't go wrong.)

    Funny, Dr. Diab was also mentioned as another option. I think they may have assumed you were interested in VBS (which he performs) and I know the staff in Philly think very highly of him.

    Best of luck!

    And yes, boys can grow until 18, sometimes even beyond that.
    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/

  9. #9
    Join Date
    Jul 2012
    Posts
    4
    We saw the Doctors we were referred to today, and they do not deal with scoliosis as 'advanced' as 29%, said that he needed a more agressive approach to treatment rather than what they do there. So, I now have a referral to UCSF to see a spine specialist. I will be calling to set something up with Dr. Diab first thing monday morning. It was great to get the referral and see a Dr. I'd actually researched (thanks to you all here!). They also want him to start physical therapy, for his back and rotator cuff, as the way his shoulder tilts forward..and him playing baseball, he's having a lot of pain in his shoulder. He suggested a pilates based therapy, anyone have any experience with that? It's a bit of a drive to find that, but can find physical therapy in town here which would be much easier as school starts next week but want to do what is best for him.
    Jen

  10. #10
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    Aug 2004
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    ny
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    Hi Jen,

    To be honest, it sounds like the doctors you saw definitely do not specialize in treating scoliosis in children (to their credit, they admitted that). Actually, I would say that 29 degrees is considered moderate scoliosis, not extreme, so I was suprised to hear they considered it 'advanced'.

    In any event, I would not start PT, pilates or ANY regimen until I saw the correct type of doctor (if it were my child). These guys sound like they are maybe sports injury specialists - and I would really suggest that you wait and see what Dr. Diab has to say, because treating children with scoliosis IS his specialty - and that makes a world of difference. I know several parents whose children see Dr. Diab and they are very, very pleased with him. You will be in great hands.

    Best of luck to you and please keep us posted!

    Maria
    Last edited by mariaf; 08-18-2012 at 09:23 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
    Join Date
    May 2008
    Location
    reno,nevada
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    3,535
    Quote Originally Posted by mariaf View Post
    Hi Jen,

    To be honest, it sounds like the doctors you saw definitely do not specialize in treating scoliosis in children (to their credit, they admitted that). Actually, I would say that 29 degrees is considered moderate scoliosis, not extreme, so I was suprised to hear they considered it 'advanced'.

    In any event, I would not start PT, pilates or ANY regimen until I saw the correct doctor (if it were my child). These guys sound like they are maybe sports injury specialists - and I would really suggest that you wait and see what Dr. Diab has to say, because treating children with scoliosis IS his specialty - and that makes a world of difference. I know several parents whose children see Dr. Diab and they are very, very pleased with him. You will be in great hands.

    Best of luck to you and please keep us posted!

    Maria
    I agree, and it looks like you are headed in the right direction. Try not to worry too much, you will like the team at UCSF. Take a smaller car if possible since the parking spaces are tight. That would be my biggest worry. (smiley face)

    Keep us posted

    Ed
    49 yr old male, now 58, the new 53...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

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