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Call out to Sueb20

amicus
8 years ago

Apologies if there's a way to tag a specific poster, like on Facebook, as I don't know how to do it. Sue, I just read your thread about Scoliosis, but thought you might not be checking back to it anymore and I wanted to share my daughter's experience with you.

In the summer before grade 10, she had her annual back to school physical exam, and everything checked out great, with no hint that she would ever develop scoliosis. My daughter did have a rapid growth spurt during 10th grade, growing about 5 inches in the Winter. She still looked 'normal' in clothing (obviously I was no longer bathing her) and never complained of any back pain, so nothing was suspicious. But toward the end of Spring, when she wasn't wearing sweaters or hoodies any more, I noticed her right shoulder blade was really sticking out. I asked her to bend over and touch her toes, as a sideways downward slope (usually higher right side, sloping down to left side) is the classic sign of scoliosis. I was shocked to see how badly her back was sloped!

I immediately got her to the doctor, who sent her to a specialist at one the best hospitals in our area (Sick Kids Hospital in Toronto) and they took measurements (by Xray of pelvic/hip bones) to see if she was still growing. Much to our dismay, the 5" rapid height spurt within 2 to 3 months had caused a 28 degree upper curvature of her spine, and a 22 degree lower curvature! Although my daughter was 14 and a half, she hadn't yet started her menstrual cycles, (which also indicates growth isn't over) which meant she could still grow taller and be at risk of further spinal curvature. So they made her a brace, which she wore religiously for a year, until they determined she had completed her height growth. Unfortunately, while bracing did prevent it from getting worse during the remainder of her height growth, it did not correct her curves at all.

They typically do not like to do surgery unless a curve is at least 40 degrees, or the curve is still worsening after bracing, of if the patient suffers from terrible back pain. The surgery is very intricate and can occasionally cause permanent nerve damage/pain or VERY rarely, complete paralysis from spinal cord damage. As my daughter's curve was contained at the original curve of diagnosis and not causing her any pain, we were hopeful it would not cause her any problems. Other than her right shoulder blade sticking out if she wasn't standing ramrod straight, and the slope of her back, (visible only if she bent over at the waist,) nothing was glaringly obvious to other people.

Fast forward and my daughter is now 27. She had not experienced any back pain because of her scoliosis until the last 2 and a half years. But after having her first child, she gradually started getting worsening back pain, while doing things like holding her growing baby, trying to nurse him while keeping her back straight, bending over to bathe him in the tub, etc. She went to see a chiropractor who did more Xrays, and saw that her scoliosis had worsened from 28 and 22 a dozen years ago to almost 36 and 28 now!

A good friend of mine has a daughter who had back surgery and no longer has a crooked spine, but recovered from the surgery with one leg now paler and colder than the other, that always feels 'kind of numb and tingly.' Ultrasounds show nothing unusual, so they say it's just an unpredictable (and unfortunately permanent) side effect of delicate surgery near the spinal cord. I read that Isabella Rossellini (Ingrid Bergman's daughter) claims to suffer worse back pain after the surgery, despite having a straight spine now, supported by the metal rod in her back.

So my daughter is now trying to decide if she should just try to handle the pain for the rest of her life (not excruciating enough for prescription pain killers, but bad enough to need Advil several days a week) or ask for the surgery and hope for pain relief, while risking the possible side effects. She thinks she might plan to have her second baby, and then reassess if her scoliosis got any worse, in which case, she'll probably opt for the surgery. She'd really like a second child and doesn't want the surgery beforehand, in case it makes the pregnancy/delivery really difficult or more painful, with a metal rod in her back.

Sue, I'm sincerely not trying to scare you, because I've read that the majority of kids diagnosed with minor scoliosis do not usually worsen to a point that would require bracing or surgery. I'm only posting this, as my daughter went from no scoliosis at all, to a bad double curve between yearly checkups, thanks to a rapid growth spurt that happened during the Winter. That allowed her protruding shoulder blade to go unnoticed by everyone, under bulky sweaters and hoodies.

I'm happy your daughter will be getting it looked at again soon. But if it doesn't look serious and they decide to take a 'let's watch it' approach, I'd suggest having your daughter bend over and touch her toes every few weeks (especially if she hasn't started her periods yet, or if measurements show she's still growing) to check if she's getting a sideways downward slope of her back that is worsening. Also look at her shoulder blades periodically when she's upright, to ensure one (usually the right) isn't protruding out, like a hump on one side.

Odds are, your daughter will only have (if any) a very minor curvature that will NOT be noticeable without an Xray, need no treatment and cause no problems at all! They say that core strength is great for strong back muscles, so I'd bet her gymnastics would benefit, if anything. I'm admittedly just overly anxious to advise other parents to keep a close watch, whenever their child goes through a very significant growth spurt, very rapidly, so they can get their child braced if necessary, before the curve worsens.

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