Page 1 of 2 12 LastLast
Results 1 to 15 of 30

Thread: Brace check-up and some banter

  1. #1
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901

    Brace check-up and some banter

    My "little" (actually ~5' 9" ) Willow had a 6-month radiograph done. It was 36* so no change from the last visit when it was 40*.

    Still almost no rotation. I wonder if the spine can physically curve any more if it doesn't start to rotate. Maybe it is locked at this angle and can't go higher unless it starts to rotate. We'll take that if it is true.

    The curve was stable in the last six months after moving ~8* in the previous six months (while wearing the brace) and being stable during the six months before that (before the brace).

    Clearly, the curve moves when it wants to move irrespective of brace wear.

    So here's the new deal as we know it today (subject to change):

    1. Risser is ~3 but he said not Risser, not Tanner-Whitehouse, not any other bone age indicators etc. were going to determine the maturity w.r.t. curve progression... in fact they are coming back to chronological age as the main predictor of maturity (if you can believe it) although he mentioned menarche onset also.

    2. He agrees with my assessment that the bracing literature is a miasma... can't tell up from down. He still doesn't believe bracing has been shown to be efficacious. Bracing certainly might work but nobody has shown it yet in a well-designed study.

    3. I voiced my concern about if Willow stays at ~40* when she reaches maturity and that would lock her out of surgery as a teenager and would seem to doom her to progression through life and eventual surgery as an adult. He said that 50* is the point where you expect most folks to have a progression through life that might necessitate surgery later on. He said Willow will likely not need surgery as an adult if it stays at ~40*.

    I asked about pregnancy and progesterone and he denied that that triggers progression in a previously stable curve. That is, he seems to be claiming that progesterone or anything pregnancy-related won't jump-start a previous stable curve of Willow's magnitude.

    I asked why the huge difference in average recovery between kids and adults and he said it was because most adults are not just having AIS corrected but have other problems being fixed. That's my understanding of what he said.

    So it was a very good visit. We went in there expecting that we would be scheduling surgery in early summer. We came out thinking there was half a chance Willow would never need surgery for scoliosis. There was much rejoicing. And I again credit the power of no prayer whatsoever.
    Last edited by Pooka1; 03-05-2009 at 12:31 PM.
    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."

  2. #2
    Join Date
    Dec 2008
    Posts
    494
    Quote Originally Posted by Pooka1 View Post
    Bracing certainly might work but nobody has shown it yet in a well-designed study.

    :
    What do you mean by "work"?


    Quote Originally Posted by Pooka1 View Post
    And I again credit the power of no prayer whatsoever.

    Well, um, actually, you see, it's like this ............ When I stopped at St Josephs Oratory outside of St Justine's Hospital I said a prayer for ALL our kids.



    Good news on the checkup.

    BTW, I think I'm going to follow Pam's suggestion and keep some of the more scientific debates/discussions in the Research area. Makes sense.
    of course, if I keep making stupid mistakes reading graphs maybe I should hang it all up.

  3. #3
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by concerned dad View Post
    What do you mean by "work"?
    Touché.

    Well, um, actually, you see, it's like this ............ When I stopped at St Josephs Oratory outside of St Justine's Hospital I said a prayer for ALL our kids.

    DOH!

    Therefore God exists.

    Good news on the checkup.

    BTW, I think I'm going to follow Pam's suggestion and keep some of the more scientific debates/discussions in the Research area. Makes sense.
    of course, if I keep making stupid mistakes reading graphs maybe I should hang it all up.
    Don't sweat that mistake. It's extremely minor. Others have made far worse mistakes in peer-reviewed pubs.
    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
    Sep 2007
    Posts
    338
    Great news about Willow's non-progression, Sharon. Although in a way you are still in limbo, no doubt it's a huge relief to not be heading toward surgery at this point. Will Willow keep on wearing the brace?

  5. #5
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Thanks Mary Ellen.

    We talked about whether she should continue to wear the brace. Nobody in that room knew the answer though I think we left with our doctor assuming she would.

    I continue to leave it up to Willow. I assume she will continue to wear it but I don't know that. It's her decision and while there is no obviously right answer, equally there is no obviously wrong answer.

    In re limbo, the Pope said it doesn't exist so we can't be in it! It didn't exist, then it did, and now it doesn't!

    Actually, we were so mentally prepared for surgery this summer that we feel like the governor called with a reprieve. And I actually have some hope for the first time really that she might not need surgery in her lifetime. But we'll have to wait and see how this story progresses.
    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."

  6. #6
    Join Date
    Oct 2008
    Posts
    299
    That's excellent news about your daughter, Sharon, both about her remaining stable and her future prospects for surgery (or no surgery, I guess I should say). Your almost out of the woods, hopefully.
    mamandcrm

    G diagnosed 6/08 at almost 7 with 25*
    Providence night brace, increased to 35*
    Rigo-Cheneau brace full-time 12/08-4/10
    14* at 10/09 OOB x-ray
    11* at 4/10 OOB x-ray
    Wearing R-C part-time since 4/10
    latest OOB xray 5/14 13*
    currently going on 13 yrs old

    I no longer participate in this forum though I will update signature from time to time with status

  7. #7
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Great news Sharon. I hope your daughter can continue to dodge the surgery bullet forever.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  8. #8
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by mamandcrm View Post
    That's excellent news about your daughter, Sharon, both about her remaining stable and her future prospects for surgery (or no surgery, I guess I should say). Your almost out of the woods, hopefully.
    Hey thanks.

    I need to research this business about progression potential at different angles at maturity. I know from reading testimonials that folks have progressed to surgery when they had smaller curves than Willow presently has. If I can find anything resembling research on it, I'll email it to the surgeon for comment.
    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."

  9. #9
    Join Date
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by debbei View Post
    Great news Sharon. I hope your daughter can continue to dodge the surgery bullet forever.
    Thanks, Debbe.

    I know you were told your curves were stable when they were in the 30s and still they progressed. Were you told that was unusual? It doesn't seem unusual based on the testimonials I read here. But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.

    Anyhoo, nobody is going to fuse Willow if she is sub-surgical at maturity so I guess it's a moot point. She may just have to wait and wonder, unfortunately. That was the one bright spot for getting surgery this summer... she would presumably be done with scoliosis like her sister.
    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
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Great news, Sharon!!

    While none of us know what the future holds, I don't think you could have asked for a better visit - stable curve and the possibility, as someone said of "dodging the surgery bullet" completely.
    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
    Jan 2008
    Location
    NC
    Posts
    8,901
    Quote Originally Posted by mariaf View Post
    Great news, Sharon!!

    While none of us know what the future holds, I don't think you could have asked for a better visit - stable curve and the possibility, as someone said of "dodging the surgery bullet" completely.
    Thanks Maria.

    We were blind-sided by the stability because both Willow and I thought the curve had progressed.

    She still has a ways to go but it's looking less certain about needing surgery. It's just lucky that she isn't rotated. If she was obviously rotated and also sub-surgical, I know it would bother her. Small mercies.
    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
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by Pooka1 View Post
    I know you were told your curves were stable when they were in the 30s and still they progressed. Were you told that was unusual? It doesn't seem unusual based on the testimonials I read here. But the surgeon claims 50* and above is the time you start to worry about significant progression leading to surgery in a lifetime, not below that.
    If I'm not mistaken from our conversations, wasn't your curve was deemed stable at skeletal maturity (or shortly after), Debbe? Maybe I misunderstood.

    Sharon, I don't know of anyone (in the time frame of Debbe's bracing - within a few years of mine) who was told anything other than "when you're done growing, the curve stops". And whether you were 35° or 50°, they thought that's where you'd stay.

    The 50° theory wasn't one widely subscribed to when I came out of my brace. I can imagine most doctors today wouldn't release an adolescent with a ±50 curve at growth end without discussing surgery, but they definitely did back then.

    There are strong suspicions progesterone can allow a curve to move during pregnancy, but just like anything else, it has to be the type of curve prone to progression. Mine wasn't ... but I know plenty of people who did.

    The Baylor Scoliosis Center states:

    "Adults with scoliosis face more difficulties than children. Adult patients, particularly women, fall into one of these categories:
    • Young women with very large curves who have no pain. The probability of their disease progressing is 80 or 90 percent and that untreated, they may have problems later in life. Treatment options are determined on a case-by-case basis.
    • Young women who have a history of scoliosis who were told their curves would not progress in adulthood. Their curve was stable with no back pain, but after pregnancy things changed. The progesterone produced in pregnancy possibly causes the new curvature. The ligaments become lax during the pregnancy and to prepare for delivery and during this time, the curve progresses. Some of these women are now experiencing pain.
    • Women who had a small curve that continued to progress throughout adulthood, but not related to pregnancy. In their 50s, the deformity has become an issue and pain might be affecting their quality of life.


    Research has shown that in adolescent idiopathic scoliosis, curves more than 50 degrees tend to show steady stepwise progression in adulthood at a rate of about one to two degrees a year. Although many smaller curves tend to remain stable into adulthood, there are some that continue to show unexpected adult progression despite falling initially short of the 50 degree magnitude."

    This view is all I've ever read in about the last 10 years from the experts. I know I've seen studies on the progesterone link ... and will try to dig them up.

    In answer to your question of what is usual, it appears NOTHING is really all that UNusual in women with AIS.

    Who knows whether the fact my curve was JIS vs. AIS had anything to do with the fact my curve didn't progress at all ...

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  13. #13
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Sharon & Pam,

    At the time I was released from my orthopedic doctor at age 23, I was told that I shouldn't progress any further. That's when both curves were around 30-35 degrees. Granted, this was back in 1985. Sheesh I'm getting old.

    Then in 89 I had xrays taken by another Dr. Dumbell because I was having tailbone problems, who didn't know how to read them properly. He never measured them correctly. When I brought this 1989 Xray to Dr. Neuwirth last spring, he measured that old film at about 45 and 35. Since 1989 I continued to progress. I think it is my daughter's ortho doctor now who recently told me that at skeletal maturity with a 45-50 degree curve, the chance of progressing is 50/50. Some do; some don't and we really can't tell who will and won't. (Without that genetic test, I suppose)

    Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance. So, even if EVENTUALLY Willow has to have surgery when she is an adult, the surgical procedures most likely will be much better than what is available today. I don't know that ANY of us are ever truly 'done' with scoliosis. Lord knows I wish it were true.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  14. #14
    Join Date
    Nov 2007
    Location
    Houston, TX
    Posts
    1,757
    Quote Originally Posted by debbei View Post
    Sharon, this is how I view it in my case. I am SO thankful that I didn't have surgery back in 1976 when my scoliosis was discovered, as the surgeons recommended. My parents wanted to try the brace, and 'allegedly', it 'worked.' Although now I consider it a failure, what it did was buy me lots of time for medicine to advance.
    I feel exactly the same - very grateful I didn't have it for pain at 29 vs. 39 ... and I talked to a surgeon in '97.

    There's not a doubt in my mind I would be SO messed up now if I'd let him touch me.

    Regards,
    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op ±53°, Post-op < 20°
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  15. #15
    Join Date
    May 2007
    Location
    Rugby, UK
    Posts
    269
    Sharon, your post made me smile from ear to ear. I know just how wonderful that expected good news (and glimmer of hope) feels, from our appointment last month.

    Long may it continue!

    Laura x
    UK based Mum of Imogen, 38 degree curve at 9 years old. SpineCor since 15/6/07, 31 degrees in brace.
    10th December 07 - 27 degrees, 23rd June 08 - 26 degrees, Feb 09 - 24 degrees, Aug 09 - 35 degrees, Jul 10 - 47 degrees, Dec 10 - 50+ degrees.
    Surgery due to take place early December 2011 at the RNOH, England.

Posting Permissions

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