Results 1 to 15 of 15

Thread: Conflicting messages/measurements

  1. #1
    Join Date
    Nov 2009
    Posts
    21

    Conflicting messages/measurements

    Hi
    My son was diagnosed with scoliosis in 2003; he was 8 years old. His curve was around 20˚ then. He was watched for three years while his curve worsened. About 2 and a half years ago, he received a TLSO brace. Since then, his curve has progressed considerably and is now at 50˚. At least, that's what our doctor, Daniel Green at Hospital for Special Surgery, said as of last Tuesday when my son had his out of brace xray. Dr. Green recommended that we schedule fusion surgery for next summer vacation. I panicked. The result was that I quickly found this forum (whew!), as well as several others, where I came up with the name of Dr. Michael Vitale at Columbia Presbyterian, whom we saw today. Not only did he NOT recommend surgery, he said he measured my son's curve at only 42˚. He said there was no harm in waiting, and that even if his curve was at 50˚, it didn't automatically mean surgery. I'm dazed and confused and very sorry I didn't find this forum sooner--I feel like a prize idiot for not investigating my options as soon as he was first diagnosed. Any input would be gratefully appreciated.

  2. #2
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,318
    Welcome. Glad you found this forum.

    You should never feel bad about trusting an experienced surgeon. But it is eye opening how much experienced surgeons can differ in opinion.

    Nobody is born knowing that experienced surgeons can differ so much. It isn't your fault that you didn't know this.

    It's good that you got another opinion. You can even get more opinions. A woman on here got five opinions on her daughter. I got two for my daughters.

    The inter-operator difference for determining Cobb angles is commonly quoted as being up to +/- 10* so it is not jaw-dropping that one surgeon measures 50* and the other 42*. The intra-operator variability is commonly quoted as +/- 5*. This is not an exact game and it seems obvious that if you shoot a radiograph, ask the patient to walk around the room once, and shot another radiograph that you would not get the same number. What they try to do is have the same person read the radiographs over time and look for change or rate of change. It's going to have some error.

    It's rarely an emergency. Even an angle of 50* isn't an emergency if the curve is moving slowing or not moving at all. But it is important to know the rate. My one daughter's curve increased 5* a month for at least 5 months and was never documented as moving slower or stopping. She needed surgery sooner rather than later but even then it was 2 months between when we pulled the trigger and when she was fused 20 months ago. My other daughter had a variable curvature rate. It sometimes stopped and sometimes moved 3-4* per month. She was fused this October.

    Again, nobody is born knowing any of this and you should cut yourself some slack. We are all doing the best we can.

    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."

  3. #3
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Quote Originally Posted by Pooka1 View Post
    A woman on here got five opinions on her daughter.
    That was me. I highly recommend getting as many opinions as you feel you need to get.

    Here's our experience: X-ray ordered by family doctor (who found Scoli) said Scoli was 34*-no mention of Kyphosis (forward bending curve in back); Ortho #1 said Scoli was 36*, Kyphosis 79*. Immediately mentioned possible surgery, but put her in a Milwaukee brace; Ortho #2 (same hospital) said Scoli Scoli was 35*, Kyphosis 79*, suggested Boston brace; Ortho # 3 was not a pediatric ortho who honestly told us he could treat Jamie while in a brace, but was not able to do spinal fusion on a child (Jamie and I loved him, but because of future needs, we didn't stay with him); Ortho #4 said Scoli was 42* and Kyphosis 75*, recommended surgery (Shriner's Hospital); Ortho #5 (same hospital as doctors #1 & #2) said Scoli was 43* and Kyphosis 73*. X-rays done by doctor #5 two months later measured 46* for the Scoli.

    Sorry this is so long, but I wanted you to truely understand how different every doctor's opinion can be. You need to get as many opinions as you need to be 100% sure you have chosen the best doctor for you and your son. Be sure the doctors are pediatric orthopedic surgeons who specialize in Scoliosis.

    Feel free to ask any questions you may have. We are all here to help.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  4. #4
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Hi Trav86,

    You've gotten some great advice so far, so I will just add a few thoughts.

    I think we've ALL beaten ourselves up, unnecessarily, thinking we should have done something differently, or caught it (scoli) sooner, etc. I know I did, but after a long time I realized I wasn't at fault. Hindsight is always 20/20 - and we all do the best we can for our kids with what we know at the time. You are doing a GREAT job by not accepting the first opinion you were given and by doing all your homework and seeing some of the top docs in the field. Your son is very fortunate.

    By the way, I'm guessing you are a fellow New Yorker. We happen to travel to Philly to see Dr. Betz and the team at Shriners and they've been unbelievably awesome! I also know of Dr. Vitale - I've heard from a few of his patients, etc. Dr. Betz also knows him well. By all accounts, Dr. Vitale is one of the absolute best in the field!

    That said, there's no harm in seeking a 3rd or even a 4th opinion (but be careful not to break Mary Lou's record - she's held it for quite some time - LOL!!!!)

    Best of luck to you and please keep us posted.
    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 2007
    Location
    Ontario, Canada
    Posts
    140
    On the topic of scheduling surgery, When my son first saw his surgeon he had a curve of 68. Surgery was a sure thing but his surgeon said there was no hurry for it. At the time because his scoliosis had just been discovered there was no real history on his rate of progression so it was better to hold off as he had more growing to do. As it turned out his next appointment a couple months later his curve was up to almost 80 so it became a bit more urgent to do the surgery sooner but had the curve not progressed much we would have waited.

    Definitely go with more opinions, as many as you can. Unfortunaely here in Canada we don't have many options with getting many opinions. But we did manage to get a second.

    Ramona
    mom of Patrick, age 15 at time of surgery
    diagnosed July 2006 curves T58 L 38

    Nov. 2006 curves T72 L38
    also lordoscoliosis

    feb.2007 curves T79 L43

    Surgery May 16 2007
    fused T4 to L1

  6. #6
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by scoliboymom View Post
    At the time because his scoliosis had just been discovered there was no real history on his rate of progression so it was better to hold off as he had more growing to do. As it turned out his next appointment a couple months later his curve was up to almost 80 so it became a bit more urgent to do the surgery sooner but had the curve not progressed much we would have waited.
    That makes sense. It seems the rate that one's curve is progressing is an important factor in determining the urgency of surgery - or, in some cases, even if surgery is warranted.
    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
    Nov 2009
    Posts
    21
    Thanks to everyone for your input! It makes me feel slightly better. We really liked Dr. Vitale, but getting another opinion is a great idea. Mariaf, yes, we are fellow New Yorkers. I'm curious about your decision to go to Shriners. I've always had this (probably misplaced) confidence that New York was hospital Mecca. Can you tell me a little about your experience with Dr. Betz? Snoopy, no one has ever mentioned kyphosis to us, but my son has a fairly pronounced rib hump on the right side--does this always indicate kyphosis? Also, did any of you try alternative therapies--Schroth, etc? My husband is very anti-chiropractor, so it would be a hard sell, but I want as much info as possible. Thanks again.

  8. #8
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by trav86 View Post
    Mariaf, yes, we are fellow New Yorkers. I'm curious about your decision to go to Shriners. I've always had this (probably misplaced) confidence that New York was hospital Mecca. Can you tell me a little about your experience with Dr. Betz?
    Hi Trav86,

    While NYC is probably the "hospital Mecca" for some things, IMHO when it comes to pediatric orthopedic treatment, particularly scoliosis, you can't do any better than the team in Philly led by Dr. Betz.

    We happen to have very good insurance - and we did see another (NY) doctor prior to finding Shriners and Dr. Betz. Once we had our first visit at Shriners, there was no going back for us and I truly believe my son's life is better for it.

    Please feel free to e-mail me if you like (my e-mail address is in my signature) - as I said, we are practically neighbors, and I'd love to get to know your family better!

    Take care,
    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
    Jan 2006
    Location
    PA
    Posts
    778
    That said, there's no harm in seeking a 3rd or even a 4th opinion (but be careful not to break Mary Lou's record - she's held it for quite some time - LOL!!!!)

    Maria,

    Can you believe Jamie will be 5 years post-op on Monday?!

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  10. #10
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Quote Originally Posted by trav86 View Post
    Can you tell me a little about your experience with Dr. Betz? Snoopy, no one has ever mentioned kyphosis to us, but my son has a fairly pronounced rib hump on the right side--does this always indicate kyphosis? Also, did any of you try alternative therapies--Schroth, etc? My husband is very anti-chiropractor, so it would be a hard sell, but I want as much info as possible. Thanks again.
    I'll let Maria tell you about her experience with Dr. Betz, because she's been taking her son there for many years. Dr. Betz was our 4th opinion and we would have allowed him to do Jamie's surgery had we not found Dr. Segal. Dr. Segal trained under Dr. Betz at one point and I felt they were equal in their ability to treat Jamie.

    Kyphosis is a totally different thing from Scoli. It can be seen with or without Scoli. Jamie too had a rib hump but it was because of the Scoli, not the Kyphosis. Sorry, I didn't mean to add more worry to your shoulders.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  11. #11
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,805
    Quote Originally Posted by Snoopy View Post
    That said, there's no harm in seeking a 3rd or even a 4th opinion (but be careful not to break Mary Lou's record - she's held it for quite some time - LOL!!!!)

    Maria,

    Can you believe Jamie will be 5 years post-op on Monday?!

    Mary Lou
    I can believe it Mary Lou, because David will be six years post-op on March 10 (5 days after I turn 50!) - time really does fly!

    Congrats to Jamie on hitting the 5-year milestone!
    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/

  12. #12
    Join Date
    Jun 2009
    Posts
    19

    Smile

    i was in the same situation my curve was 24 shot up to 52 in bosten brace the docters said surgery and we found the spinecor brace those docters told me i was really at 48 and they could help now im back at 24 and anly wearing it at night you should look this up it really helped me
    Diagonosed:age12
    and im still alright

  13. #13
    Join Date
    Sep 2009
    Location
    Wisconsin
    Posts
    184
    5 opinions? I am having difficulty with one.....

    treatment options vary too, I like to investigate the treatment plans til I am blue in the face and drive my family up the wall....

    This isn't common rational behavior?

    I thought we all did this....and then choose a method or doctor just to second guess did I do the right thing?
    age 15
    Daughter diagnosed at age 13
    T20 l23 10-09
    T27 L27 1/2010

    T10 L 20 in brace 4/2010
    T22 L25 12/2010 out of brace
    T24 L25 7/2011 out of brace

    Type 1 diabetes- pumping
    Wearing a Boston brace and Schroth therapy
    Faith, Hope, and Love- the greatest of these is Love


  14. #14
    Join Date
    Jan 2008
    Location
    NC
    Posts
    9,318
    In my opinion, it is a testament/indictment of the state of affairs of scoliosis treatment that parents can and do step in and modify or even choose the treatments.

    A good example is parents whose kids are in Spinecor are getting out-of-brace radiographs when working with the inventors of Spinecor AS AGAINST the advice of the inventors. And they are right to do so.

    This area of medicine needs attention.
    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."

  15. #15
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Quote Originally Posted by Bigbluefrog View Post
    5 opinions? I am having difficulty with one....
    My daughter was facing major surgery and there's no way I would allow just anyone to do her surgery. All five doctors had great critia, but for me, it took more than that to be allowed to do Jamie's surgery. I was looking for the whole package....great surgeon, great surgery results, someone who talked directly to Jamie, etc. For us, luckily all five doctors told us the same thing, not that we wanted to hear she needed surgery, but that helped us to know we were doing the right thing.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •