Adult Scoliosis

[MySilverSpine]

@faffadoodledo @Thecaravan @BeatriceAndLottie @Gervhill @Lozzie51 @oakleaffy @Rosenoire @RuthW

Following on from the thread in Style and Beauty it seemed more appropriate to discuss the medical aspects of scoliosis here.
@Lozzie51 I too was told surgery was too risky until I got to the stage that not having surgery was not really a sensible option. I was deteriorating so fast that I saw surgery as an investment in my future health.
@oakleaffy have you had surgery? I was in appalling pain before my surgery and spent a lot of time lying down. I found sitting down and standing still so painful.
Now I can stand still eg in a queue, I can walk for miles but I still can't sit for long. Flights are a nightmare. My long fusion is putting a lot of pressure on my L5/S1 vertebrae and I now recently have facet joint pain there which is incredibly painful but which I hope will resolve a bit. I still spend a lot of time lying down!

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Thank you for starting this. It's so hard to find other adults with the problem. Most of the information is about children and teenagers. I've had mine since teenage years but 25 years after last scan was told it's severe (over 50 degree curve) but functioning although with pain so surgery risky.
How long was recovery from the fusion?

I too was diagnosed as a teenager, curves just short of the threshold for surgery so discharged at around 17 and that's it. No follow up. Surgery was much less sophisticated back then so in some ways I'm glad I avoided it.

There seems to me to be a degeneration point around menopause time and having discussed this with my surgeon, I wish someone had flagged that HRT might have helped me. Instead my top curve increased from 60 degrees to 70 degrees in four years and the pain in my lumbar spine where my second curve was a little smaller was becoming unbearable.

There is so little information available about middle aged women (mostly) with adolescent idiopathic scoliosis or even with scoliosis acquired in later life.

I do mean to document my surgery journey on Instagram but I still get so emotional about my life with scoliosis. I'm not someone who ever accepted it. I hated it all my life. The psychological effect on me of having a practically straight spine now is immense.

I am still recovering over two years after surgery. Some days I move a lot and some days I rest a lot.

Thank you so much for sharing. Did you find anything helped pre surgery with pain? I use hot water bottle / TENS / physio / swim and analgesia. I think mine deteriorated quickly around menopause.

I have scoliosis diagnosed when I was having a medical for nursing at 18, its quite a mild one but at 58 it gets achey now.

Hi,
I hope you don't mind me jumping in. My DD is 20. Diagnosed at 16. But got lost in the NHS system (COVID) until very recently.
She has a phone consultation on 23/12. Her curvature is 32° to the left in T area and 34° in L area. (I can't recall exact details). We were told that this isn't something which would be treated surgically.
She has been experiencing pain in her ribs lately and slight trouble with her breathing too. I'm worried it has worsened.
I am trying to gather knowledge before her consultation.

@Lozzie51 I had and still have a long hot bath every evening. Post surgery I put a slightly inflated plastic cushion under my back where I can't bend to the shape of the bath.
I also had some CT guided steroid injections in my spine prior to needing surgery. They helped but only for a few weeks each. The next step if I hadn't had surgery would have been to cauterise the nerve endings to try to achieve a longer pain relief.
And yes, various analgesics, hot water bottle, Pilates, physio etc. I still use them all now.

@user12343333333334 I'm not a medic but I imagine some imaging would be needed to know whether the curves have worsened. Can your daughter convert it to an in person appointment?
For me, I think the years from 16 to 40 were a fairly stable period.
I've also read that there isn't a direct correlation between curve size and pain.

Hi! My DD (now aged 20) was also diagnosed at 16. She had a 41 degree curve which after an unlucky growth spurt jumped up to 56 degrees, hence she had spinal fusion surgery to correct things a few days before her 18th birthday.

When was her last x-ray? If it was over a year ago then it’s worth asking for some up to date imaging just incase her curves have indeed worsened. Typically on first diagnosis (and especially if there’s pain) the consultant will refer for an MRI scan to check for any underlying causes - has she had this done yet? If not then it’s also something worth pushing for.

At your DD’s age and degree the only thing that they will probably recommend is physio. Bracing isn’t an option once they’ve stopped growing and surgery is really only done if the curve is 50 degrees+

DD struggled a lot with pain before she had her operation so I have plenty of sympathy for your DD - it’s really difficult. The rib pain comes from rotation of the spine, as it curves it also twists. Schroth physio can be very helpful with this as it directly addresses the rotation component of things - it can be hard to find a practitioner who offers this though. Whereabouts are you in the UK?

Thank you so much.
I'm in the NW but daughter at uni in London.

Following. On behalf of adult DD who is headed for surgery next year. Diagnosed aged 17 with a 40 degree curve deemed too mild for surgery. Then this year was scanned again due to increase in pain and it's worsened by ten degrees.