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Chronic pain

Anyone with untreated scoliosis?

7 replies

largeprintagathachristie · 01/07/2022 12:17

Interested in hearing from anyone with untreated scoliosis. I’m 51.

Mine wasn’t picked when I was young and I just self managed, really, (Pilates, occasional osteopath visit) thoughout my twenties to forties. I thought my curve was mild. Never actually saw a doctor about it (which now seems stupid).

But this year the wheels came off.
Turns out I have both lumbar and thoracic curves and the Cobb angle is 45 degrees. New damage in lower back due to the asymmetric loading on those discs has really laid me low for the past six months. Pain. Mobility issues.

Feeling a little low about the fact that the scoliosis is much worse than I had assumed and what this means for as I get older.

I am apparently near the threshold of benefitting from surgery for the scoliosis. Obviously there are lots of cons to that. The “pro” would be less strain on the lower back.

i am visibly crooked and I wasn’t in the twenties and thirties. Have been referred to a a physio and first lesson is to adjust posture; is hard work!

Any thoughts, experiences, advice would be most welcome. And what it’s meant for you with work and any reasonable adjustments you have asked for or they have made. I’ve had some weeks off with the disc damage. The problem is it hurts to sit for any length of time, but a standing desk doesn’t solve everything because of the scoliosis- I guess fatigue and pain arrives because everything is working so much harder than in normal spines.

Seeing the consultant orthopaedic surgeon for a follow up in a few weeks. Was a bit 😮 to see his letter mentions the “prognosis” for my curve ☹️ …

OP posts:

largeprintagathachristie · 01/07/2022 17:30

Hopeful bump

OP posts:

Daftasabroom · 01/07/2022 17:38

I can't help with the scoliosis I'm afraid, but I did have an L4/L5 decompression and fusion to treat a stenosis and spondylolisthesis. I was off work for 3 months and another six months before playing much sport. It's a big decision and won't be right for everyone but I don't regret it in the least now.


Deadringer · 01/07/2022 17:52

I am 58 and have a double curve, it's a long time since I was checked but iirc the curve on my lower spine was 45, 38 on the upper or thereabouts. I have been having pain in my right hip for the last year or so, especially when I am lying on it, my Dr recommended physio but I haven't started yet. No idea if it's the scoliosis or some other age related issue. I have problems with my knees, genetic and unrelated to the scoliosis, which caused my arches to drop years ago, so I have lots of issues with my feet. I do suffer with back pain now and then especially if standing for a long time, but it's difficult to identify the cause with so much going on with my knees and feet. Like you I have noticed that I don't stand straight any more, sometimes I think I look like one of those trees that leans over. Sorry I can't help, just posting in solidarity really.


largeprintagathachristie · 01/07/2022 19:44

Thanks @Deadringer all the best to you (I also have a troublesome knee that is adding to the mix)
and thanks @Daftasabroom for your feedback on having had surgery

OP posts:

clipclop5 · 07/07/2022 03:17

DD (18) recently had surgery for scoliosis and I am a physio - like yours, it had also caused disc problems in her lumbar spine due to asymmetric loading. Although her spine is now completely straight, the disc problems have actually worsened (as we were told would likely be the case). Since the vertebrae higher up are now fused with rods and screws, they can no longer move and therefore the discs lower down have to compensate for this. This obviously leads to more pressure on them and increased wear and tear which has unfortunately lead to sciatica for poor DD!

She had to have surgery as her curve was past the 50 degree mark and rapidly progressing but if possible it’s definitely something I’d seek to avoid. Recovery is tough enough for teens so later in life I can’t imagine it would be a walk in the park whatsoever.

Scroth physio is now considered the gold standard for scoliosis so worth seeking out if possible. Consultant’s main advice was to be as active as she could - yoga is great as builds core strength whilst loosening tight muscles around the curve which cause pain. Swimming also recommended. If your orthopaedic consultant deems it appropriate he could possibly refer you on to a pain management specialist if that’s something you’d be interested in.

There is a group on Facebook called Scoliosis UK which has been invaluable to us since DD was diagnosed. There’s people of all ages from all over the UK, it’s amazing for asking questions or just support in general x


largeprintagathachristie · 07/07/2022 17:56

thank you very much @clipclop5

All the best for your daughter and it's really useful to hear of her experience.

I've just joined the facebook group you mention, and I'm about to look up Scroth physio...

OP posts:

Ferny123 · 16/09/2022 23:49

Both our daughters have scoliosis. Both completed full schroth program in Manchester with SOS. Now working with an amazing physio called Debs Turnbull. Wish we knew her from the beginning. Hope you can try to reduce your discomfort x x

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