Anyone with untreated scoliosis?

[largeprintagathachristie]

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 ☹️ …

Hopeful bump

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.

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.

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

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

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...

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

Hi largeprintagathachristie !
Just wondering did you decide to go with the spinal fusion? I am almost 40 and also have left my scoliosis untreated. My curve is at 72 degrees but it quiet well balanced so does not look much worse than it did in my 20s when at 50 degrees. My consultant recommends surgery in the next few years so was wondering how that would be for a first timer like yourself. Hope you are managing your pain well :)

I'm watching with interest. Around 4 years ago scoliosis was picked up on a chest X-ray I had. I met with surgeon who said it was mild and would likely never get any worse. I was aged 36. Now 4 years later the pain is unbearable I can't get out of bed in the morning, some days I have to lie flat on the floor due to pain. I am waiting to be seen by the orthopaedic team

My 13 year old is a year post op. Her curve was 40 degrees day of surgery and now she's living her best life. Very grateful it was an instant fix.