Scoliosis in 13 year old

[Buggedoff]

My dd has just been diagnosed with a 45 degree bend in her spine. She needs an MRI and will go back in two months to be seen again.

We were told that bracing will not be effective because her bend is too severe, and so she may need surgery, or may need no treatment at all. She has no symptoms, and minimal back pain, so we were quite surprised to find her scoliosis is so large. Dd went into the appointment thinking why am I here, I'm fine, and is now feeling that there is something wrong with her.

What choices have you or your dc made with a similar diagnosis? Spinal fusion surgery seems like a huge operation for a child with no symptoms, but I am aware that her condition could get worse. The doctor said that surgery on children is easier than on adults, because they are more flexible. I'm very confused, and instinctively do not like the idea of putting a child through a large operation unless there is a very good reason. But I also don't want my dd to be bent over like an old woman when she is a young adult.

[charlotte12345]

Hi, I had to wear a brace for 2 years when I was 11 then at 13 I had the operation, I was told by the time I was a adult I would be in a wheelchair I had no pain or symptoms the nurse picked it up at a health check at school, I did have it done 30 years ago ( boy I sound old ) and apart from a little back ache now and again I have never had any problems apart from carrying twins, I remember not really being that worried about the op at the time my parents seemed much more concerned :) to do the op when she is still growing is apparently the best time to do it. Good luck x

[UnderThePink]

My sister had spinal rods put in to correct the top part of her S shaped curve (obv couldn't do the bottom curve as would have prevented her being able to bend over!) This was in the mid-90s though so prob quite out of date. Despite being so long ago the surgery was absolutely the right option - she tried bracing for a few years and it did nothing but make her feel uncomfortable and embarrassed. She personally requested the surgery, not because she had any noticeable symptoms at all, but she was fearful of how she may look without it.

Surgery was huge success, wasn't in hospital long and minimal problems since then. I've heard that the recovery time now is half what it was then so sounds like a reasonable option. Good luck :)

[Jess03]

I've a slight scoliosis that is untreated and I get back ache most days (in my 30s), I didn't have pain as a child but carrying babies has been hard/painful too, people also have no sympathy for chronic pain, you just sound like a whiner. you should ask them to explain in more detail what is going to happen if you don't get the operation. It is serious, but I'd go for treatment now vs pain later. Do they know the cause? Assume there is no uncorrected leg length discrepancy?

[feetheart]

I have no personal experiences to offer but your DD might like to know that Usain Bolt has scoliosis - he talks about it quite a lot in his autobiography. He hasn't had surgery but all of his training revolves around the scoliosis.

Good luck to you both.

[Umlauf]

Hi, I had a similar curve to your daughter which wasn't diagnosed until I was 18. I had no back pain really or symptoms but people did used to accuse me of standing "sassily" at school because I had one hip out. It was first noticed by my granny making my prom dress when I was 16, so I was also shocked to discover such a severe curve (actually 2 curves)

I waited until I'd finished university and then had the operation at the age of 22. By that time I was more concerned with how clothes fit and was a bit vain, I didn't really have back pain other than aches after long long walks, but who doesn't?! I got the impression from the surgeon that they were doing it more for self esteem issues than because I really needed it, I could have avoided it had I wanted to, or delayed it for years.

The operation itself was fine, I was in hospital for 10 days and on day 4 or 5 they had me up and walking. I was fully recovered after about 2 months but took it easy for another month or so. I was told beforehand I'd need to wear a brace but when I came round they said I didn't need one.

Since the operation I have had a huge self confidence boost and am an inch taller, I no longer get back pain when on long walks and am physically stronger than beforehand. I recently gave birth and that worried me a little but I had an epidural with no issues at all and a normal birth.

You don't mention your dsd age but from personal experience, as she has school etc that would be interrupted and no symptoms, it's not bothering her, you could creatively delay until there is a better time. My surgeon also mentioned the age/flexibility factor but at 22 I still counted as "young" and my bones hadn't fused fully yet, so she has plenty of time!

Mammoth post, hth.

[fizzly]

Hi. I had an S curve with 2 severe bends and have two rods. I was offered a brace but told that it was basically inevitable I'd have to have an op, so we agreed to op straight away. My DM consulted me full throughout (I was younger than your DD). My understanding is that curves can get much worse during growth spurts in puberty, and I was told that mine would probably be life limiting if not operated on -your DDs may not be as bad. Took me about 12 months to fully recover - was in hospital for 6 weeks and off school for a term. My spine is basically fully fused, as well as having the rods, and I had several ribs removed. I had no symptoms beforehand (picked up in school healthcheck) but pictures taken 12 months apart clearly showed the progression.

It was obviously a big deal at the time and I had chronic back pain throughout my teens and still do to an extent but not as bad. I am not as tall as I would have been without the op (but have disproportionately long legs ) It has prevented me from doing certain sports but as I wasn't sporty that was never a big deal. However, has it actually impacted my life, negatively? No, not at all. And virtually no one who meets me as an adult would guess I'd had it done. I do think it is hard for teenage girls, as body image is so important and the scarring can be significant. Mine are very visible when I'm at the beach, for example, but even as a teenager I took pride in telling people what they were from and they became an important part of my identity.

When first pregnant with DC1 I was told I couldn't give birth vaginally by an overanxious and ignorant obs consultant. I also cannot have an epidural due to the fusions (which I'd been told about as a teenager, and never forgotten!). I hunted out an orthopaedic surgeon (my own retired many years ago) who was able to write to my ob/gyn consultant and explain that there was no sensible reason for me to not have a normal delivery and after much toing and froing the hospital agreed to let me 'try'. In the event, I have had 2 perfectly normal vaginal deliveries, with no epidurals. If I had had to have a C-section, it would have had to be under GA, but not necessary fortunately.

[Buggedoff]

Thanks everyone for all your replies. The next stage is the MRI, but we haven't got the appointment through yet. One girl in her class has had one and told her it was not nice. But I don't think dd is stressing too much about it.

[mix56]

There are several different sorts of bends & degrees of gravity, so one person's advice will not necessarily be appropriate for all.
My daughter had a double bend scoliosis, a giant "S" & started walking with one shoulder higher than the other, (the beginning of a hump) at 12 yrs. it started to pinch & cause pain & block her back.
after consulting (France) they decided to put her in a plaster cast to redress for 6 weeks, then a resin corset until she stopped growing, they didn't want her to have a short body & long legs (checking thru looking at the xrays at the cartilidge in her pelvis ) also they wanted her to be menstruating, in her case this started late.
Then finally they decided that it had stabilised & as her two bends were symmetrical, & her head central, she could continue without surgery.
However she continued to have pain & her back would block.
so went went to another hospital.
The bends had regressed, the new consultant said it was imperative to operate putting a bar from the top to bottom, the bends were going to continue, & she would end up hunched, in pain & finally the bends twisting the ribs compress the lungs & heart, which can be life threatening.
Eventually it was done when she was 16, she went home after about 5 days & back to school after 2 weeks.
so. she learned to bend from the waist, use her feet to pick things up, & live with it. she has always had pain, inspite of physio etc. then after 4 years one of the bars broke & she had to have the op redone. the bone graft hadn't taken. (which was bad luck, only 3 other cases in patients by our surgeon in over 2800 ops)
In the bigger picture, she had a rocky adolescence, while emotionally dealing with her shape, corset, etc. (I mean BAD) but she could not have avoided the surgery, she will probably have difficulty dealing with pain if she ever carried a child, but you don't choose your illness, & c'est la vie, she is currently 25 & diving in the Caribbean, her life has adapted to her handicap, somethings are harder, (backing her car, long periods standing)
but she is fine. Good Luck

[Parsnipcake]

Hi, I had spinal fusion at 14 and recovered well the only long term issue is that childbirth can be more complex - my pelvis just couldn't expand properly and I had to have a GA with my first caesarean. For my 2nd, they used an ultrasound and managed to site an epidural - 45 drs came to watch ( which I was happy about as I wanted others to have an epidural option). It took a long time and numerous attempts but they did finally do an epidural.

For me the worst bit was the plaster cast afterwards, but I don't think they do that with spinal fusion any more. I would say to go for it, it really improved my posture and breathing and would have been much harder when I was older.

[Bramblesinforrin]

My friends daughter was diagnosed at a similar age and chose to go for surgery. My friend did a great deal of research and eventually managed to get her treatment sited at Gobowen hospital, which I understand is. Centre of excellence. A few years on her daughter is doing very well still and is pleased she had the operation done.

[BigBad1SaidNo]

I had an older version of the surgery at 14. I'm 40 now. It was a bit mentally tough going under the knife when I wasn't symptomatic but my consultant and parents really involved me in the decision which helped.

I am absolutely fine. Surgery was the best thing for me.

I've run three half marathons and have had two kids (both vaginal deliveries). Both pregnancies were fine. I had an anaesthetic assessment prior to delivery and was told no epidural which was fine. They did manage a spinal block (safer because no catheter left in the spine) before they got the ventouse on my monstrosity of a second son out.

I have NO pain and no problems.

[Birgitz]

I had the operation in the 90s too and haven't had any major difficulties since then. I was told that if I didn't have the operation, that my spine could bend to such a degree that it might squash my lungs and cause breathing difficulties. The year after the operation was quite restrictive (no sports, no lifting and a back brace for six months), but 2 years later I was skiing! Have also had 2 vaginal births with no problems (although was told an epidural was not possible as there was a risk of the metal rod getting infected). I have had some back pain since having children (mainly caused by carrying them), but have managed this with regular trips to the osteopath and a heat pad at night. Feel free to ask if you have any questions.