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Spinal fusion surgery -- advice -- is it worth it?

Posted , 5 users are following.

Kelly271
Kelly271

Hi everyone!

So, bit of background - I'm 19, I was diagnosed with scoliosis and kyphosis at age 16. My curve is S shaped, the top curve being a minor 20° and the bottom curve slightly more severe at 41.5°. This curve is located on my lumbar spine.

I suffer lower back pain whether I'm lying down, sitting up, standing still or walking around - I've exhausted physio which didn't make a difference. It only managed the pain for a short period.

I recently went to meet with a surgeon who advised me on the option of spinal fusion surgery. The choice is mine, which sometimes I wish it wasn't. At 16 I was initially diagnosed with a 32° lumbar curve which has since progressed by almost 10°. I was told it wouldn't.

Anyway, the surgeon I met with is known as Dr. Gibson from the Royal National Orthopaedic Hospital in Stanmore, just outside of London. I live in Northern Ireland and this is where I'd be flown to if I decided to go ahead with the surgery. What's putting me off are the risks associated with spinal fusion - blindness, neurological problems like paralysis, rods breaking, loss of blood etc. Although the surgeon has only had 2 out of over 1,100 patients suffer from these symptoms, I still can't help but worry that I'll be the third person.

Will I be worse off? Does it help the pain?

All I want is some words of wisdom, encouraging advice and some reassuring stories. It's such a massive decision to make and I'd be so grateful for your input.

PS - I sympathise with those people whose curves are worse than mine, I sometimes feel guilty expressing my pain when I know there are others who have it alot worse. I salute you.

Kelly x

0 likes, 9 replies

9 Replies

  • isy9512
    isy9512 Kelly271

    Posted

    Hi Kelly, I have seen that you've sent me a message. I'll reply to it a bit later if that's okay smile but I just wanted to let you know that I have experienced the exact same thoughts, feelings and worries that you are currently experiencing so I cannot stress it enough when I tell you that I know what you're going through! I'll speak to you later and we can go through everything and hopefully make you feel a bit better about the whole situation  smile
    • Kelly271
      Kelly271 isy9512

      Posted

      Hi Isy,

      Thank you so much! It would be a great help if I could talk everything through with you, thanks again for your kindness. Message me when you're free, there's no rush 😊

      Kelly x

  • Jay91157
    Jay91157 Kelly271

    Posted

    Hi Kelly271,

    Only you can make the decision but we can offer our help. The hospital in Stanmore is very well renowned for its spinal surgery so you would be going into one of the best in the UK. Your Dr has trained in Oxford and New Zealand just like my surgeon who heads up Stoke Mandeville the world famous hospital. 

    If you look at all the possibilites that could go wrong against all the people in the UK and the number of operations your Dr alone has done I would be thinking more positively. 

    I had my op Feb last year 71degree top 48degree bottom, T2 - L2 aged 57. Blood loss was minimal in the grand scheme of the operation just over a litre. Blindness has never happened with my surgeon so the odds are low and I would think the same applies to your surgeon. Rods braking and screws getting loose can be a possibility but again odds are low as is the paralysis. All these are mentioned to everyone having surgery as a matter of protocol. 

    Think of the numbers who have been operated on and come out with a better lined spine and no pain. Think what you want to get out of it. Could you continue to tolerate the pain for starters, will you get worse as you age, probably. 

    I have no regrets having the operation as I approach  my first year with rods on the  28th Feb. I knew on the day of the operation I would go into surgery and come out the way I went in, except for the addition of the rods and screws, and recovering from 5 hours of surgery. 

    I have a 12" scar that I am very proud of, and a year on is fading nicely with the help of Bio Oil. This is the reminder of how brave I am and how special I am. I hope you will feel this way too, if you decide to go for sugery. If you do please keep us posted on your recovery on this forum and any other help and support we are here for you. Good Luck. 

    • Kelly271
      Kelly271 Jay91157

      Posted

      Hi Jay!

      Thank you so much for your detailed reply. I had no idea you knew of my surgeon, it makes me feel alot more relaxed knowing he has a good reputation.

      I think it's more the fear of it not working and going through it all for nothing - although I was told if I didn't have it then I would be alot worse during my 40s/50s as the curve progresses and rotates regardless. That's why I'm considering going for it.

      Did the operation improve your everyday pain or did it stay the same?

      By the way, I commend you - your scoliosis is alot more severe than mine and I think you're a really brave person, I hope your quality of life now is better and continues to get better.

      Kelly x

    • Jay91157
      Jay91157 Kelly271

      Posted

      Hi Kelly,

      Yes the pain did improve to one. Occassionally things get tight muscle wise but usually when stressed or exercisisng.

      Google your surgeon. You may feel more positive the more you know about him, and his works. If you look on the hospital web site you should be able to see the operations he has carried out and the outcomes. It may give you more confidence in him. 

      As you know I had mine done at 57 and over the years it got worse and they could not straighten me fully as the centre of my spine had stiffened so I now have a 37 degree curve top and almost straight bottom. Yes it is true you continue to progress and rotate. I have so much more confidence now. 

      Just remeber the amount of operations he has performed and only two have not gone the way it was hoped. Keep positive, as when you deiced to go for it you will have positive thoughts all the time. 

      You will be brave and proud when you have had it done.You are a special person

      Jay x

    • Kelly271
      Kelly271 Jay91157

      Posted

      Hi Jay!

      Thank you. It's relieving to hear some of the pain improves. When you get a stiff back, what do you do to help it?

      I have complete faith in my surgeon, it's just the whole risk factor of the surgery. He told me it might not help the pain but I suppose they're not allowed to guarantee anything. It's also the thought of flying overseas, it's just all so overwhelming. What time of year do you recommend having the fusion done?

      I find it commendable that you went for the surgery at 57. Did you put the surgery off beforehand or did you wait to see if you could live with scoliosis?

      How do you feel now after the surgery if you don't mind me asking?

      Talk about 21 questions lol. I'm just very apprehensive.

      Kelly x

    • Jay91157
      Jay91157 Kelly271

      Posted

      Hi Kelly, I see I had a typo error in the last message my pain is none existence. I am going to message you privately in answer to your questions if you don't mind. 

      Jx

       

    • Kelly271
      Kelly271 Jay91157

      Posted

      Hi Jay,

      Of course I don't mind, I'd be grateful if you would!

      Kelly x

  • hanky
    hanky Kelly271

    Posted

    Hi Kelly,

    I'm going for servers Kyphosis surgery on good Friday.....not worried about the op or the post of it as I know I need it and have put up with bad curvature of the spine for many years and has caused me servers depression etc,

    Well like you (the decision is mine)

    I said yes and have a fantastic spinal surgeon in Southampton and had a meeting with him to focus everything he is doing with my spine, there's hardly any risks and have watched tons of his videos, he put my mind at rest and I going all out for the surgery, even it it does correct the shape a bit and helps get rid of a bit of pain. I will be happy.

    I hope you've made up your mind 😏

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