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Thread: Had my daughter not been fused...

  1. #31
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    I find this discussion interesting re: when curves will progress the most during puberty, etc.

    Sharon: You have a really interesting comparison study with identical twins! If we were genetically wired to progress a certain number of degrees at certain points in our lives, then their curves would have been the same, I would think. There must be other factors that I'm sure someone will discover someday.

    Just to add my own data to this: My scoliosis wasn't discovered until I was 14, when it was already at 47 degrees - I went in for an X-ray because I was having back pain, and this was what they found. I've looked at pictures of myself a year earlier and there's barely any difference between the levels of my shoulders, but a year later, when the X-ray was taken, there's a huge difference. I'd be really curious as to how many degrees my curve progressed that year. They X-rayed me again 3 months after the first X-ray, right before my surgery, and I was at 62 degrees! I was curving very quickly - but who knows if it would have stopped after what was probably my "growth spurt".

    Re: children being part of the process for the decision for surgery: My dad was pretty much resigned to the surgery, but my mom, in that pre-internet period of time, did all the "call around" research she could to find alternatives. She found out about things like electrical stimulation, and asked me if I was interested. But I could really tell something was wrong with my body (getting more back pain, getting shortness of breath) and somehow I knew I didn't have time to try other things. I told her I was O.K. with the surgery, that I thought I needed it, and she accepted this and stopped researching. I was comfortable with how everything went, but sometimes felt kind of bad for stressing out my mom for wanting surgery.

    So that's my more than 2 cents worth
    - 39 years old
    - At age 14, curve progressed from 45 degrees to 62 degrees in two months.
    - Surgery in 1990 at the Children's Hospital of Eastern Ontario (CHEO) with Dr. Letts. Fused T5 to L2. Corrected to about 30 degrees.
    - Harrington rod
    - Herniated disc - L5/S1 - January 2008. Summer 2009 - close to making a full recovery.
    - New mommy as of February 2011
    - Second child - September 2013
    - Staying relatively painfree through physio exercises!

  2. #32
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    Quote Originally Posted by SIsForSarah View Post
    I find this discussion interesting re: when curves will progress the most during puberty, etc.

    Sharon: You have a really interesting comparison study with identical twins! If we were genetically wired to progress a certain number of degrees at certain points in our lives, then their curves would have been the same, I would think. There must be other factors that I'm sure someone will discover someday.
    Well one is slightly more stubborn than the other. Maybe that affects their curves.

    Just to add my own data to this: My scoliosis wasn't discovered until I was 14, when it was already at 47 degrees - I went in for an X-ray because I was having back pain, and this was what they found. I've looked at pictures of myself a year earlier and there's barely any difference between the levels of my shoulders, but a year later, when the X-ray was taken, there's a huge difference. I'd be really curious as to how many degrees my curve progressed that year. They X-rayed me again 3 months after the first X-ray, right before my surgery, and I was at 62 degrees! I was curving very quickly - but who knows if it would have stopped after what was probably my "growth spurt".
    That's an interesting trajectory.

    I think the point is that if the growth spurt launches a kid into surgery territory at a relatively young age then surgery is seemingly unavoidable because even if the curve is say ~50* or 60* after the growth spurt and then stabilizes, in a teenager that curve is statistically very likely to keep progressing at a rate that will land them in surgery territory.

    This eventuality is completely lost on Weiss.

    There is little likelihood my daughter's curve would have ever stopped though it may have slowed. I take that point about non-linear curvature rates though I wonder just how uncommon it is to see certain curves never slow down appreciably. I mean as Linda pointed out, there are folks, some non-elderly, who have triple digit curves. Note to Weiss.

    Re: children being part of the process for the decision for surgery: My dad was pretty much resigned to the surgery, but my mom, in that pre-internet period of time, did all the "call around" research she could to find alternatives. She found out about things like electrical stimulation, and asked me if I was interested. But I could really tell something was wrong with my body (getting more back pain, getting shortness of breath) and somehow I knew I didn't have time to try other things. I told her I was O.K. with the surgery, that I thought I needed it, and she accepted this and stopped researching. I was comfortable with how everything went, but sometimes felt kind of bad for stressing out my mom for wanting surgery.

    So that's my more than 2 cents worth
    I find these testimonials fascinating. Thanks for putting in those two cents.
    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. #33
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    Growth spurts

    Just wondering:

    1. How common are they?

    2. How high does the rate of curvature usually go during these episodes?

    My formerly braced daughter (I have to remember to write "formerly" as she stopped wearing it) is almost skeletally mature and never went through an obvious growth spurt that resulted in more than about a degree a month. Plus she was stable (prior to the brace) during at least one 6-month period at or around the time she should have been having the growth spurt.

    As I said before, my fused kid hit about 5 degrees a month and was never stable at any point between measurements.

    Whose trajectory is more common? I assumed it is my formerly braced daughter because very few cases progress to surgery territory at skeletal maturity. Maybe that is wrong.
    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. #34
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    Savannah's stats

    25 Sep 07 - 29*
    15 Jan 08 - 48*
    24 Mar 08 - 58*

    About 5*-6* a month for 5 months.

    Is that a normal growth spurt in terms of length and duration?
    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. #35
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    Hi Sharon...

    I talked to a few specialists about this issue today. They confirmed that one may (or may not) see big increases (like your daughter's) during a growth spurt. But, during periods of no growth spurt, the curves will usually stay as they are or progress very slowly. Then, at the time the child is skeletally mature, the curve progression will usually drop to the 1.5 degrees per year level.

    Speaking of big curves, how big do you think these curves are?

    Regards,
    Linda

  6. #36
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    Quote Originally Posted by LindaRacine View Post
    Hi Sharon...

    I talked to a few specialists about this issue today. They confirmed that one may (or may not) see big increases (like your daughter's) during a growth spurt. But, during periods of no growth spurt, the curves will usually stay as they are or progress very slowly. Then, at the time the child is skeletally mature, the curve progression will usually drop to the 1.5 degrees per year level.
    Thanks for asking them about this!

    So are you saying 5* a month is necessarily a limited-duration growth spurt? That's why I ask how long the growth spurt should last. My daughter's was moving at that rate for at least 5 months. It may have always been moving at that rate prior to diagnosis. That's also why I say I don't see a reason why it should suddenly stop at any point after 5 months of that rate.

    I asked if the surgery could be postponed from March to June after school and he said no. Not an option. I suspect he thought the curve would keep progressing at that rate for another 3 months. So we are now talking possibly 8 months of moving at 5* a month if that is the reason he said we couldn't postpone.

    Speaking of big curves, how big do you think these curves are?
    Are you asking me how big I consider my daughter's curve was at 58*? I don't think it is huge but I think it would get huge absent surgery.

    I consider 58* well within surgery territory with no hope of stability over her lifetime even if she was skeletally mature with the 58*.

    Thanks again for asking about that. I was wondering there.

    All I know is I have two seemingly end-member cases I'm dealing with here. I have no way of knowing whose case is the most common other than reading testimonials and talking to the surgeon.
    Last edited by Pooka1; 05-30-2009 at 04:42 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."

  7. #37
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    Quote Originally Posted by Pooka1 View Post
    Thanks for asking them about this!

    So are you saying 5* a month is necessarily a limited-duration growth spurt? That's why I ask how long the growth spurt should last. My daughter's was moving at that rate for at least 5 months. It may have always been loving at that rate prior to diagnosis. That's also why I say I don't see a reason why it should suddenly stop at any point after 5 months of that rate.
    I think that growth spurts are of variable length. Anecdotally, I've heard of kids who grew 5+ inches in a period of 2-3 months. I've also heard of multiple kids who had >5 degree per month increases, but I don't ever recall of hearing of that lasting more than about 6 mos.


    Quote Originally Posted by Pooka1 View Post
    Are you asking me how big I consider my daughter's curve was at 58*? I don't think it is huge but I think it would get huge absent surgery.

    I consider 58* well within surgery territory with no hope of stability over her lifetime even if she was skeletally mature with the 58*.

    Thanks again for asking about that. I was wondering there.

    All I know is I have two seemingly end-member cases I'm dealing with here. I have no way of knowing whose case is the most common other than reading testimonials and talking to the surgeon.
    Sorry, I made that super confusing because the link I tried to include didn't get pasted. The question was essentially rhetorical.

    http://www.scoliosislinks.com/images/Plastination2.jpg

    Regards,
    Linda

  8. #38
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    Quote Originally Posted by LindaRacine View Post
    Sorry, I made that super confusing because the link I tried to include didn't get pasted. The question was essentially rhetorical.

    http://www.scoliosislinks.com/images/Plastination2.jpg

    Regards,
    Linda


    I consider that large though I think Weiss would say it is still sub-surgical.
    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. #39
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    FAO Balletmom

    Quote Originally Posted by Pooka1 View Post
    25 Sep 07 - 29*
    15 Jan 08 - 48*
    24 Mar 08 - 58*

    About 5*-6* a month for at least 5 months.
    Balletmom, I was just wondering what you meant when you wrote in the other thread (see below) that your daughter's curve was progressing extremely rapidly. Based on my daughter's numbers above, she was moving ~5* a month for 5 months. Was your daughter's curvature rate as documented in radiographs similar?

    "My daughter was diagnosed at twelve with a 35 degree extremely rapidly progressing curve, Risser 0 and premenarchal. Ten months before she was screened by the nurse at school and noted for possible scoliosis, her pediatrician (who has a specialty in orthopedics) had checked out her spine thoroughly for scoliosis, went down her back vertebrae by vertebrae, with me watching, and said she was straight. Ten months later she had a 35 degree curve. We were told that she would probably progress to surgery, but was given a Charleston bending brace. My daughter is now three inches taller, fourteen years old at the end of this month and five months post-menarche. The orthopedist thinks her curve is probably going to stay where it is at this point, even though she will continue wearing a brace for the next year at least. The latest measurement of her upper curve, with 24 hours out of brace, was 32 degrees." -- Balletmom
    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. #40
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    My daughter was flagged for scoliosis by the school nurse in mid or late January I believe. Where we live a free x-ray is made available by a local hospital and then a free clinic is held some months later to give the results to the kids and parents by an orthopedist. All donated apparently.

    I took my daughter for that x-ray on February 19th. The clinic got delayed and I believe never actually held, and I eventually got the x-ray back through the school nurse months later with a form attached to it that says the upper curve was 25 degrees from the doctor. I went along with the school's procedure because I still didn't believe that she had scoliosis, not knowing very much about it and my sister (the doctor) agreed because she had seen my daughter at Christmas vacation and figured if she had scoliosis it was probably very mild as she certainly wasn't presenting as someone with a large curve.

    But then I started having second thoughts of waiting for this clinic because I was starting to notice changes in my daughters back and when I had my daughter take her shirt off, I saw the windswept look. So I immediately set up my own appointment with an orthopedic doc so I wouldn't have to wait. My daughter went in for a second x-ray, actually multiple x-rays, on March 7, and her upper curve was at 35 degrees. So, if the measurements are to be believed, and I have no idea about that first set, never met the doc, she actually progressed ten degrees in less than a month. If I had waited to get that initial x-ray back my daughter would have already been a surgical candidate.

    I have now had two ballet moms who are friends of mine call me and tell me that their daughters have been flagged for x-rays by either a school nurse or a pediatrician and the thing I tell them emphatically is, you'll hear that scoliosis is never an emergency situation, but if your daughter is in a growth spurt, the curve could increase dramatically in a very short amount of time and while not technically an "emergency", time is of the essence if you want your daughter to have a chance at avoiding surgery. I wish I had known that or received some advice from anyone for my daughter, although I think I managed to, fortunately, get her seen fairly quickly.

  11. #41
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    Okay thanks for typing that.

    Quote Originally Posted by Ballet Mom View Post
    (snip)The clinic got delayed and I believe never actually held, and I eventually got the x-ray back through the school nurse months later with a form attached to it that says the upper curve was 25 degrees from the doctor.
    and

    So I immediately set up my own appointment with an orthopedic doc so I wouldn't have to wait. My daughter went in for a second x-ray, actually multiple x-rays, on March 7, and her upper curve was at 35 degrees. So, if the measurements are to be believed, and I have no idea about that first set, never met the doc, she actually progressed ten degrees in less than a month. If I had waited to get that initial x-ray back my daughter would have already been a surgical candidate.
    Okay the inter-observer precision rate is commonly quoted as up to 10*. So it's hard to know how much her curve moved in a month though it probably did move. That rate would be 10* in 18 days (16.67 degrees per month) and I would want to ask some surgeons if that is possible. Maybe it is.

    Do you have any subsequent measurements? Is the rate zero now?
    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. #42
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    March 2008, upper curve 35 degrees.

    April 2009, upper curve 32 degrees - out of brace for approximately thirty hours.

    I presume that would be considered a rate of zero.

  13. #43
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    That's a zero rate in my book!

    At this point, I think it is certain that your daughter's curve has been stable for at least the last 13 months. That sounds like it will stay sub-surgical given her age and other things you mention.

    I don't think you have the data to say how fast it got to 35* because that is your first radiograph measurement that doesn't involve inter-observer variability nor imply an incredibly high progression rate.

    That curve is very different from that of both my daughters... one never was stable and the other has only had one 6-month period of stability documented before more progression. In the fall, if my unfused daughter's curve hasn't progressed, then that would be a period of 12 months of stability.
    Last edited by Pooka1; 06-07-2009 at 07:54 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."

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