Newly diagnosed with severe scoliosis

Posted , 3 users are following.

Hi I had a chest X Ray in July of this year due to sudden breathing issues. it was discovered that I have severe scoliosis. 70 degree thoracic curve. not sure if it's always been like that or has gotten worse over time. waiting on an appointment with orthopedics. just wondering anyone's experience with this. do they just monitor it to check it's not progressing more?

0 likes, 6 replies

6 Replies

  • Posted

    I think it depends on how old you are , they will probably recommend a spinal fusion if its at 70 . hopefully your appointment is soon.

    • Posted

      I am 36 now. I don't know long it's been severe like this. The nhs is slow. it's a 50 week waiting list.

    • Posted

      Hello Jennifer

      My curve is in the lumbar spine and also severe. They wouldn't operate on me because I have osteoporosis, 3 fractures, complex osteophytes (arthritic spurs), severe disc degeneration ... and I am 73. At your age however, your bones should be strong so surgery would be an option. I tried a scolosis physiotherapist first and this can work for many people. Try finding someone on the Internet. They have exercise programmes. 50 weeks is too long not to do something when you are having breathing problems; it's outlandish! I am in Melbourne, Australia and there is only one physio in this whole city who specialises in scoliosis but you might have more luck. Good luck anyway. xx

    • Posted

      hi maureen. thanks for the reply. what degree is your curve can I ask? I am in the UK. My breathing is better now but I guess it still needs looked at to monitor the progress?

    • Posted

      Hello Jennifer,

      Lumbar and thoracic scoliosis will be quite different I expect. When I first went to the scoliosis physio in early 2016 she measured my curve as 23 degrees but the x-ray she used was out of date. In July last year I had another x-ray and it was 32-33 degrees. This year in June I got suddenly worse with bad right buttock pain which spread to the hip and groin areas and nerve pain that I call the 'creepy crawlies' (far stronger than pins and needles). I had a CAT scan in August which described the scoliosis as severe but gave no measurement and I don't think I really want to know since they don't seem to be able to do anything to help me anyway. I had an injection of cortizone into the spine in September but because of the angle of the curve and the osteophytes they couldn't get the needles where they wanted to put them and just gave me an epidermal cortizone injection. It may have made a small difference but at times, like this afternoon, the pain can be just as severe as before. I am trying acupuncture but with little success so far. My spine is not straight up top either because as it bends it also twists but I do not have lung problems.

      How you do things (apparently) affects the spine. That is why I think you should see someone with specialised knowledge about scoliosis, so that you can correct any behaviours that are likely to make the curve worse. I learnt about my curve too late. A decade earlier would have made all the difference!

    • Posted

      Sorry up hear you are having problems. and not getting any proper treatment. The waiting list is so long where I an and it's just classed as routine even though I was referred as urgent. I just worry it's going to get worse before I see why specialists. I only saw the X Ray a few weeks ago. Didn't think realise how severe the curve was. I had an MRI scan of my full spine. but the results aren't back yet.

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