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Thread: Newbie Here--waiting for an appointment...

  1. #1
    Join Date
    Aug 2015
    Posts
    3

    Newbie Here--waiting for an appointment...

    I am new here. My daughter (18 next week) and son (just turned 15 in July) both have scoliosis. When I was screened in my school, they referred me, but it was very minor. When my daughter was 12, I noticed her dress was hanging oddly and I kept telling her to stand up straight so I could take her picture... She was diagnosed with scoliosis and we visited an orthopedic doc about every 6 months until she was stable, somewhere between 22 & 25. My son started getting watched at around age 11. Just because he was a boy, the doctors didn't think it would be anything to worry about. Once I told them that he was also born with club feet and had surgery when he was 6 months old, then they became more concerned about his spine. He was diagnosed with low 30's (that is what they said) lumbar curve and 22 thoracic curve in October 2014. The doctor told me we should seriously consider surgery. My son was put in a Boston Brace and got new shoe orthotics with a 1 cm lift for his left foot.

    Bad mom moment, but I thought we had scheduled his May brace follow up appointment, but when June rolled around, I realized I never even scheduled an appointment and we never had a 6 month check. When I called for an appointment (Vanderbilt Children's Hospital), the earliest was 10/23 and we were put on a cancellation list. I just called again last week, still on the cancellation list.

    In the meantime, he has grown 2.5 inches since the brace, it doesn't fit anymore and he looks more crooked and has a more prominent hump on the left bottom side. I have been researching other options and doctors and found out about the Shriners Hospital in St. Louis, MO and am determined to get him fusionless surgery. He is a late bloomer, he is 5'8" now and I would imagine will be close to 6' (dad is 6', uncle is 6'4' and grandpa was 6'3"). I called Shriners on Monday and left a message with the Nurse who I found out later was on medical leave. Today I called and did a phone intake survey and was told they would get back to us by early next week for a consult appointment. It may be a few months before he can be seen.
    So, what next.... should I try to get in to see a different local doctor that I have been told is wonderful and works with scoliosis patients but doesn't do VBT. There is also a doc in Atlanta that does VBT, but I know nothing about him. Or should I wait for Shriners? I am afraid our window of opportunity for VBT is closing quickly.

  2. #2
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,535
    Welcome......

    The decisions with your son can only be made after a current x-ray is made and measured by a scoliosis surgeon. This would be the 1st step. 10/23 is right around the corner......Bring any prior dated x-rays with you when you visit, this is important. Not much will change in 7 more weeks.

    X-rays are the only way to tell exactly what the curves are doing. Since he is 15, they “might not” want to do anything if he has a lumbar curve in the low 30’s......

    Maria’s son was stapled years ago for a 40 degree curve, you could “PM” her....
    http://www.scoliosis.org/forum/member.php?1348-mariaf

    Pediatric Spine Foundation
    http://pediatricspinefoundation.org/

    I wouldn’t be too determined on having “any” sort of surgery, I know it might seem like the right thing to do, but its probably just best to just wait and take a few deep breaths.....Its also never a good idea to sway a decision, or dictate surgical protocol. Scoliosis surgeons have extensive training at what they do.....

    Be sure to let us know what happens.....

    I also wouldn’t worry about the bracing thing......there are many surgeons that do not brace, and for many reasons. (smiley face)

    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

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Hi and welcome.

    Don't beat yourself up. You are doing a good job! The fusionless surgery is so promising.

    Your son is not near surgical range so I don't understand that comment from the surgeon.

    I don't think your son is out of stapling range and he certainly isn't out of tethering range which is larger.

    As you are dealing with a lumbar, were it me, I would get the first possible appointment with some experienced in stapling and tethering even if those were too different doctors. I am not sure they are tethering lumbars so if not then that might drop off.

    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."

  4. #4
    Join Date
    Jan 2008
    Location
    Oregon
    Posts
    1,160
    Hi there,

    Welcome to the forum, I'm sorry to hear of your son's scoliosis. I know how overwhelming it can at be at first, and we always want to do the best thing for our child right away! Scoliosis teaches patience if nothing else, unfortunately. You are making a good start at educating yourself, and have gotten some very good advice above from Ed and Sharon. I would definitely contact Maria as recommended and she can tell you a lot about her son's journey. She is a wealth of information about scoliosis and very generous in sharing her time with other scoliosis families.

    My daughter was stapled at age 8 by Dr Scott Luhmann at Shriner's St Louis. We traveled from Oregon to have that done after some bracing, as here the only recommendations were brace for 8-10 years (due to her very young age) then fusion for sure. Not very encouraging! She is now 13-1/2, and nearly done growing, with a very stable curve. Since we live so far from St Louis and her curve has been stable, we have not been back to see Dr Luhmann. He reviews her yearly x-rays which we get locally. However, he is an outstanding surgeon and was truly wonderful with us and Leah. I recommend him and the Shriner's St Louis staff highly.

    We had to wait about 7-8 weeks for our initial ortho consult after Leah was first diagnosed, then wait some more to get in to see Dr Luhmann. I thought I would lose my mind with worry. But scoliosis is not an emergency, and the appointment will be here pretty soon. I think our kids very easily pick up on our emotions and worries about scoliosis. I know for me it was very hard as I can be an obsessive worrier, but I realized I was making my daughter upset by looking at her back constantly, so I had to reign that anxiety in and wait for x-ray results rather than assuming the worst by eyeballing her back.

    I am happy to chat more if you want to send me a PM.

    Best of luck with your upcoming appointment, and please let us know how it goes.
    Last edited by leahdragonfly; 08-27-2015 at 08:35 AM.
    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

  5. #5
    Join Date
    Aug 2015
    Posts
    3
    Thank you everyone for the support and wonderful comments and info. I have learned a lot on this forum already. I should have said I was determined to get him VBT surgery if he indeed needs surgery. I know I am getting ahead of myself. I am a super worrier, can't sleep, can't concentrate kind of gal. I will wait until I hear from Shriners early next week before I decide on our next steps.

  6. #6
    Join Date
    Jan 2012
    Location
    Yacolt, WA
    Posts
    1,525
    Quote Originally Posted by bekabee View Post
    Bad mom moment, but I thought we had scheduled his May brace follow up appointment, but when June rolled around, I realized I never even scheduled an appointment and we never had a 6 month check. When I called for an appointment (Vanderbilt Children's Hospital), the earliest was 10/23 and we were put on a cancellation list. I just called again last week, still on the cancellation list.

    .
    Welcome! While I have degenerative adult onset scoliosis, neither of my adult children have spine problems. Of course, as they grew up we had lots of challenges and I was far from a perfect mom, but we weathered it all. So, forgive yourself for thinking that you are a "bad mom" for neglecting to follow-up for your son's appointment. I assume during that time, you fed your kids regularly and washed their clothes and provided shelter for them. There are few bad moms.....and you are not one of them. As parents we all struggle with multiple demands, trying to prioritize constantly. Sounds like you are very caring. As I say to my grandkids, "If you don't own it, don't claim it".

    Gayle's comments are well said. Best of luck in your journey to help your kids with their challenges, especially scoliosis.

    Susan
    Adult Onset Degenerative Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Severe disc degen T & L stenosis

    2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 in 2 surgeries
    2014: Hernia @ ALIF repaired; Emergency screw removal surgery for Spinal Cord Injury at T4,5 sec to PJK
    2015: Revision Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
    2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone + prayer

  7. #7
    Join Date
    Aug 2015
    Posts
    3
    Quote Originally Posted by susancook View Post
    Welcome! While I have degenerative adult onset scoliosis, neither of my adult children have spine problems. Of course, as they grew up we had lots of challenges and I was far from a perfect mom, but we weathered it all. So, forgive yourself for thinking that you are a "bad mom" for neglecting to follow-up for your son's appointment. I assume during that time, you fed your kids regularly and washed their clothes and provided shelter for them. There are few bad moms.....and you are not one of them. As parents we all struggle with multiple demands, trying to prioritize constantly. Sounds like you are very caring. As I say to my grandkids, "If you don't own it, don't claim it".

    Gayle's comments are well said. Best of luck in your journey to help your kids with their challenges, especially scoliosis.

    Susan
    That was very sweet! Thank you for the perspective Susan and to everyone else. I needed it.
    Also, when my almost 9 year old daughter started telling me how she was pretty sure she wouldn't have scoliosis because she got her blue eyes from her daddy and he doesn't have scoliosis... another confirmation that I have been obsessing about it too much.

  8. #8
    Join Date
    Mar 2005
    Location
    Ukiah CA
    Posts
    891
    Welcome to the fourm. Im Kara I been out of the Shriners system for 6 years now as an former patient of the Northern California Shriners. It don't feel like a hospital. But I had my surgery done by one of there surgeons due to him working at Shriners and UC Davis
    Last edited by kennedy; 09-12-2015 at 04:13 AM.
    Kara
    25
    Brace 4-15-05-5-25-06
    Posterior Spinal Fusion 3-10-10
    T4-L2
    Before 50T
    After 20T

  9. #9
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Hi Bekabee,

    First, let me introduce myself. My son had VBS (stapling) back in 2004, before tethering/VBT was even around (he's a senior in HS now and doing great by the way). I, along with two other moms, formed a support forum several years ago for parents seeking information on fusionless alternatives. That group spun into a very active FB page (here's the link):

    https://www.facebook.com/groups/2100...90772/?fref=nf

    Given his age, and particularly if the curve is above 30-35 degrees, your son would probably be a candidate for VBT rather than VBS. If you can get in to see Dr. Luhmann at Shriners in St. Louis, I believe he performs the procedure. There is also a fairly comprehensive document in the Files section of our FB group listing doctors who perform VBS/VBT around the country. But Dr. Luhmann is a excellent place to start.

    One additional note - IF for some reason Dr. Luhmann deems your son too skeletally mature for VBT (I'm not saying that will be the case), there are two doctors who have tethered older kids, with good success so far. They are Dr. Braun in Massachusetts and Dr. Betz and his team at the Institute for Spine and Scoliosis in NYC (see link in my signature). I wanted you to have this information just in case, but I am hoping it's a "go" with Dr. Luhmann IF it is determined that your son even needs surgery (a lot will depend on the amount of growth he has remaining).

    Please feel free to e-mail me as well with any questions (see below for my address). I know sometimes it seems like there are so many girls out there dealing w/scoliosis and very few boys - so if you need to speak to another mom of a boy w/scoliosis, I am happy to share my experiences with you. And although, like most boys, my son doesn't really talk about or think about his scoliosis, I would be happy to ask him any questions about surgery (or anything else) that your son would like answered.

    Best of luck to you!
    Last edited by mariaf; 10-26-2015 at 10:27 AM.
    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/

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