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Scoliosis surgery

Posted , 5 users are following.

sara04235
sara04235

I am a 16 year old girl who was diagnosed with double scoliosis at the age of 12. My curves were around 40 degrees the first time they were measured. I was given a hard brace which did not work and also managed to compress the nerve in my arm. Due to this I was given a soft brace but that did not work either. I tried going to see a chiropractor but to no avail. Recently, I met my orthopedic surgeon who thinks we might need to operate to reduce the curve as well as manage the pain, as my back is currently quite painful. 

I wanted to know if the surgery really does work and is it safe? My curves are now 50 degrees and the lumbar curve has shifted so it is no longer balanced with the thoracic one. 

0 likes, 11 replies

11 Replies

  • sarahmcc51
    sarahmcc51 sara04235

    Posted

    Hi there, my son had surgery last year aged 13.His curves had got to 78 and 68 degrees.The condition is progressive and we were told it would get worse which it did. I treated my son with regular Bowen therapy which helped with any pain- he was lucky and had virtually no pain. The Therapy didn't help the curves- some people find it helps and some don't. He recovered very well from the surgery which left him with a 15" scar huge! He copes well and never complains. After a year he can do anything he wants. He does however have a fixed spine which is almost completely rigid, this limits bending. He had a very good surgeon (Oxford John Radcliffe) who did his best with a very curved spine. We had to wait a long time for the surgery due to changing hospitals, surgeons and cancelled operations 3 times! so the spine got much worse in this time. It may be worth investigating other techniques or therapies that may help but ultimately surgery is usually the only option.Good luck.PS I know of 3 other young people who have had the surgery very successfully.

    • sara04235
      sara04235 sarahmcc51

      Posted

      Thank you so much the information.  I just have a few more questions if you don't mind answering:

      How long was your sons surgery?

      How were your feelings whilst your son was in surgery?

      My mum is extremely worried about the surgery and doesn't want to put me in danger unnecessarily. Do you know of anyone in which the surgery did not work?

    • susie200463
      susie200463 sarahmcc51

      Posted

      Hi Sarah,

      My 13.5 yr old daughter has been recently diagnosed with scoliosis.She has a 38 degree thoracic curve with a compensatory lumber curve.We met with an orhopaedic consultant at tbe Nuffield Orthopaedic Hospital i Oxford yesterday.We were told to see how things are in 6 months.Dr thinks it wont progress too much from here as shes not got too much growth left to do but im worried asto how things might be in the future so am leaning towards surgery option both for correction and cosmetic reasons.Dr said surgery not considered til 45 degrees but dont think thats definative.I just wanted to know which surgeon operated on your son and your thoughts.I did trust the dr we saw yesterday but its such a big decision that we may need a second opinion to reassure ourselves .Thanks for any info.

    • sarahmcc51
      sarahmcc51 susie200463

      Posted

      Hi Susie, we also were under the Nuffield at Oxford. Originally. under a Mr Colin Nadi ( I think that's how it's spelt) but changed to Mr Wilson- Mcdonald. He was supposed to be The best surgeon, highly recommended and we got him through a contact, all on the NHS. If I could have avoided surgery I would but things had progressed so far my son was quite deformed and bent. 78 and 68 degree curves and they were very noticeable, he had a hump in his lumbar region. It may be worth investigating complementary therapies some of these can help manage the condition. Surgery is a huge trauma to the body . I know my son's surgery was very successful and he recovered well but his body is very rigid now. If the consultant says it's worth waiting I would monitor it and in the meantime try some Bowen Technique and or Core postural Alignment both can make a big difference to scoliosis- will not cure but can improve and manage especially pain.

      Good luck. You have to do what's right for your child. If it progresses further it can cause problems with other things.

    • susie200463
      susie200463 sarahmcc51

      Posted

      Hi Sarah,Thank you so much for that info.I really hope your son is doing ok.We saw My Nuno Batista who explained everything to us but maybe we should try and see Mr Wilson McDonald aswell at some point.All feels quite overwhelming at present.We spoke to Mr Batista about exercise etc but he told us that nothing would change or halt progression.She luckily is not getting any pain.I will check out the physical therapy you suggested.

      I dont really worry about today but I do worry about progression/pain/deformity in future.Everything Ive read suggests that curves progress.Hers is 38 degrees in thoracic at present with a compensatory lumber curve.Her lumber vertebrae are completelynormal and I think its just 6 or 7 thoracic vertebrae which have curved and rotated.I know we just have to wait and see but its very worrying.My daughter though is fine and enjoyed showing her friends her xray at school today!

    • sophie56623
      sophie56623 sarahmcc51

      Posted

      Hi Sarah,

      Please can I ask why you switched from Dr Nnadi? He is the doctor I currently see, am due back next year and I think I will then have to decide if I was to have surgery or not. 

    • sarahmcc51
      sarahmcc51 sophie56623

      Posted

      Hi Sophie, as a health care professional I was quite disappointed by Mr Nnadi. I found him rude, dismissive and refused to answer some of our questions.  he did not address our son but ignored him!

      I was so cross I wrote and complained about him. We then managed to get transferred to Mr Wilson Mcdonald who was lovely. Such a difference. Some consultants are very arrogant!

      Hope that helps

      Sarah

      Hope that helps

    • sophie56623
      sophie56623 sarahmcc51

      Posted

      Hi Sarah,

      Thanks so much for your response, that is helpful. It sounds similar to what I’m experiencing, I definitely feel like none of my questions are being answered, makes it very difficult to make an informed decision about surgery!

    • sarahmcc51
      sarahmcc51 sophie56623

      Posted

      Oh dear Sophie, that's not helpful.

      I was lucky that my brother does financial business with some of the surgeons there so was able to pull a few strings for me.I came away from my first and only meeting with Mr N feeling very frustrated and angry so when I told my brother about it he said put it in an email! The e-mail was sent to him who then sent it to the management. We were then taken on by Mr WM at my brother's request.I guess knowing the right people helped. I think you have the right to ask for a different consultant if you're not happy. Good luck

  • sarahmcc51
    sarahmcc51 sara04235

    Posted

    Hi Sara, to answer your questions, the surgery took around 4-5 hours.They take a lot of time to prepare the patient and get them into the right position, this bit is crucial.My husband and I stayed in the hospital all day, my son was finally admitted to ICU early evening, he stayed there for 2 days because there wasn't a bed on the ward! he was walking by the 2nd day!. he came home after 6 days and was off school 6 weeks ( which covered the summer hols) Yes I was worried but he had the best surgeon- my brother arranged a good NHS surgeon through his contacts.Advice to you do some research on surgeons and try to find a really experienced one who you can be referred to. Only specialist centres deal with childrens surgery for scoliosis. My son did really well he was off all medication including pain relief after 9 days. And no I don't know anybody who has had a poor outcome. Your surgeon will explain the risks .

    • sara04235
      sara04235 sarahmcc51

      Posted

      Hi Sarah, thank you so much for all your help. I really appreciate it. I live in Dubai currently and my orthopedic surgeon is supposed to be the best one in the region. Hopefully that's true smile

      Glad to know your son's doing well after his op. 

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