Scoliosis - op or no op - that is the question?

[TooMuchJD]

DS has scoliosis diagnosis, he's 16 and has already had extensive surgery and complications for completely different issue so is fed up of spending large amounts of time in hospital.
We have been informed by the consultant that the curve has deteriorated slightly but not massively in the last 12 months and that surgery is the only option to straighten his spine and remove the curvature. Either that or leave it as it is, no other options discussed.
DS is reluctant to have the surgery for all the obvious reasons. He is not in any pain and it does not impact on his life in any way other than he occasionally gets an ache in his left shoulder where his shoulder blade has been pressed out of line by the curve.
Our worry is that having the surgery will actually leave him with long term chronic pain and that he will have reduced movement due to the fusion of the vertebrae and he will be worse off then he currently is.

Has anyone had any experience of this surgery or alternatively has anyone declined the surgery and how are they finding living with this condition into adulthood? Any experiences good or bad would be greatly appreciated.

I would be postponing any decision until at least he has stopped growing. Which for young men could be around the age of 21.

I had the op for scoliosis. Have never had pain and the restrictions on movement are negligible. (Only time I notice it is trying to do the brace position on an aircraft!) Op was 30 years ago!!! My curve, however, was rapidly progressing so it had to be done.

I had surgery 7 years ago to fuse 8 thoracic and lumbar vertebrae, I was 43

The scoliosis was diagnosed aged 10/11 and monitored through my teens but in the end the doctors decided it was too dangerous to operate.

I've had back pain every day until Feb 2008 when I stood up from the computer and couldn't walk, and found that my back had deteriorated to the point where I had to have surgery or my spine would snap, so I did. I now can't bend or twist at all, am only pain free when lying flat, and walking and sitting are extremely difficult - my surgeon says he didn't operate to take away my pain, only to stabilise my spine

I'm guessing as you've mentioned his shoulder, that your son's curvature is higher up - if it's thoracic and in the rib cage I think the op will be much less intrusive and much better tolerated than mine - mine was in the worst place possible, with the most severe curve in the lumbar vertebrae

When I meet people they are often shocked that my current situation is actually the best possible outcome of the surgery and I do recognise that, but I am left with constant pain and extremely restricted movement which impacts on my whole life

If it doesn't affect him too much at the moment, I'd leave it for a few years - does he do any yoga/pilates/stretching exercises? They can be extremely helpful, and also keeping moving/not staying in one position for too long - and keeping an eye on his posture

This is my x ray post surgery

You don't mention

Sorry accidental post - you don't mention the extent of his curvature but I assume it's significant if surgery is being discussed. I have a mild scoliosis diagnosed after suffering permanent pain/discomfort since first having children. Have never really been comfortable since then but I think I can say what's helped and hindered.
As Costa said, movement is key. None of us should be sitting down for long stretches of time anyway but it's hatd to avoid in modern life. Finding the right exercises and stretches can help. I've found a good physio who referred me to their strength and conditioning coach, which has made a huge sifference. Have been doing shoulder rehab (developed arthritis there) aince Christmas and I finally get periods of feeling comfortable.
I'd try & find a physio in the first instance; a surgeon won't suggest anyrhing other than surgery, which you may end up choosing but you might find other ways to alleviate future discomfort. In fact, it's thought that lots of people have undiagnosed scoliosis but don't suffer ant pain.

Any pain

My dd has a 45 degree lumbar curve which is being monitored, but has not progressed in 3 years. Her surgeon has not recommended surgery unless it progresses because it is such a big op. She is 15. He says she will probably not experience significant back pain as an adult and she has few symptoms now.

It's difficult to know if I should ask for a second opinion but I know she hates anything medical, is extremely needle phobic, so I think conservative management is probably appropriate.

I'd get the op, I have scoliosis but it was not diagnosed until in my 20s and too late for surgery. I've been in near enough constant neck and back pain ever since I can remember as a child and now into adulthood, it's a source of sadness that no one listened to me about my pain as a child when it could have been corrected.

I'd suggest the op too. My uncle has scoliosis which although he didn't suffer any pain in early life came into its own in his late 60s. In his early 70s he is now in constant pain and has developed a hump on one shoulder.

My daughter had the op when she was 17 . Her curve deteriorated rapidly in a year to 60 deg from age 15 to 17 . Long surgery but very successful and she has travelled ,worked as a teacher and now has a baby without any pain from her spine. She has always said that she is pleased she had it corrected although very frightened at the time.
She was told by the surgeon that if she delayed the surgery that she would be disabled. I hope you are getting good advice from your surgeon.

Hi
I had the 2 stage pop when I was 16, prior to this I had to wear a brace. While each diagnosis is different, I am very glad I had the opp.
I live a very normal life and have the occasional back ache, but nothing worse than other people I know with "normal backs"
Having children now I think it was worse for my parents as they understood more the risks and had to wait for the surgery while i was asleep.

My DS is 13, has been wearing a brace since 6 and is now asking for the op. His curve has deteriorated to 45 deg in the last year and the doctor is now beginning to bring it into conversations. I'm terrified.

I'm confused as to why SparklyCat couldn't have the op in her 20s. I thought it was best to wait until the patient had stopped growing?

My doctor (go) told me they don't operate if you have fully grown, only while you're an child/teen so I went away and never pushed it further. I only went to the doctor as I'd been to a chiropractor who diagnosed it and recommend I see the doc. This was a few years ago, do you think it's worth getting another opinion? I have so much pain I'd be ecstatic to get it fixed if I could.

Oh i meant to add that I went to the gp when I was a teen about my back and neck pain and was told it was just growing pains, they didn't examine me sadly!

Thanks for your replies, there seems to be so many different outcomes. DS has an s-curve to the whole spine, as he bends forward and you look along his spine it curves to the left between his shoulder blades an then to the right but less radically below his ribcage. This means his left shoulder blade is distorted & sticks out and his right hip is slightly higher than the left due to the distortion, sadly I don't know the percentage of the curvature. When he has cloths on you wouldn't notice it unless you looked very closely.
At the moment I think we are going to monitor it for the next 6 months and speak to an osteopath or chiropractor in the meantime, he will be due to see the surgeon again by then.
So difficult to decide what to do for the best.

JD sounds like we are in similar positions. DS is on 6 monthly XRays at the moment to monitor progression but has got an awful lot of growing to do, so not looking good. Hope things work out for you.

SparklyCat If you're in pain you really should go back. I'm sure things must have changed since you were a teenager and you have nothing to lose. Good luck.

OP, I recommend you ask the hospital or GP to refer him for physio. DS2 has it and it's made a massive difference. His curve is about 25, and he's only 13 so no idea if it s=will get worse. But physic has released tension and discomfort (eh was never in actual pain). The best thing it's done though, is strengthen the muscles around the curve and even them out, so that his posture has improved. He looks more upright. Before this he'd look moochy because the curve caused a bad slump forward but now he finds it easier to stand up straighter and taller.

Sparkly - I've heard the exact opposite. They won't operate while you're growing.

Late to the party on this one but I think they like to operate before they've totally finished growing as there's still flexibility in the spine to allow them to achieve a good outcome.

My daughter is 12 and had a posterior spinal fusion last year - we're a different case to your son though as my daughters scoliosis is congenital as opposed to idiopathic which will most likely be what your son has.

I know the feeling about being sick of hospitals, my daughters scoliosis is incredibly severe and we are at operation 25 I think? Plus heart surgery and other bits and pieces 😒

My friend had a treatment I think in Belgium where she was in a series of body casts then body braces that gradually corrected the curvature. I had a quick google but couldn't find any info but you might have better luck with forums etc.

If the curvature is quite mild and no physical deformities of the spinal column then bracing may work. Totally depends on the individual case.

My son had the surgery done when he was 18 as we were told to have it when he had stopped growing. It is major surgery & it's 3-4 months recovery. My son was glad he had it done and has no problems after. It leaves a large scar straight down the back & also another scar on his shoulder blade where he had a thoracotamy. If you would like to send me a pm I am happy to answer any questions.

Interesting views here. My DD has a 40 degree curve and is now 18 so is assumed to have stopped growing. We were told there would be no operation unless it progressed to 50+ degrees. She will have another X-ray next year. She is keen not he op because she wants to be straight, although to be honest you can't see the curve (its a C shape rather than the more usual S shape). I worry about pain when she is older but we have decided to stick with the advice and not push things. She is keeping fit and strong and seems to have no more problems than any hard working teen who spends too much time at her desk.
You can def have the op in your twenties. We were careful to ask this question - i.e. if things deteriorate is it still possible? And it is.

This thread is timely for us, DD is 15 and developed a scoliosis over the last 18 months with the onset of periods/puberty etc. Finally got to see consultant this week and she has a 68 degree curve, he recommended surgery and she's very keen to have it. It's definitely affecting her day to day and is very noticeable which is making her self conscious. She has a few other congenital conditions and has had a lot of surgeries since she was a baby so well used to all the medical stuff.
Dr said we're looking at around a 1yr wait list, but we're wondering how the surgery is? Anyone who's had it or experience with it able to share what the immediate aftermath and complete recovery is like? How long is usual for recovery? What pain is normal afterwards etc.
Will obv go through it all with dr but seems like it will be a while away and we were rushed in the app we had so didn't get a chance!

Thanks :)