Dealing with chronic pain
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Spinal fusion

Deffy19Deffy19 Member Posts: 9 Listener
Hi, I’ve not been on here for a bit but prior to lockdown I had an MRI which showed significant degenerative disc disease at l5-s1. I had a disectomy in 2017 but the back/hip pain is that bad now I can hardly turn over in bed at night. I take pain meds but the only option now open to me is a spinal fusion. I don’t know anyone who has had this op,can anyone advise on there experiences if they have had the op.
i am only 45 and just worry if I don’t do this now at 55 everything will be much worse,as it is some days I can’t walk far and definitely can’t do any form of sport.
please advise,as have read all sorts about infected screws and worse pain..

Replies

  • OxonladyOxonlady Member Posts: 381 Pioneering
    Deffy19, hi, I'm in two minds as to whether I should speak of my experiences because it may be totally different for you. 
    I've had five operations on my spine. I have spinal stenosis, spondylolisthesis, my discs keep herniating etc. 
    My first operation, in 2008 was a laminectomy. In 2010 I was advised by the neurosurgeon to have a fusion, in the L4-5 region. This went ahead in January 2010. I'll be honest. It was very painful. I kept saying that something wasn't right but they sent me home anyway. Eventually I had an MRI Scan which showed that I'd been right to be concerned. One of the screws had come off. I wondered whether I was the only NHS patient to have been sent home with a screw loose - literally!
    Anyway they had to re-do the operation in April. There was a long recovery period.
    Then in 2012 I had another laminectomy, in L4-3. Again I was sent home but became very ill. I was re-admitted and a scan showed a blood clot in my spine. Which is never a good thing. They used a huge needle to draw it out, without any anaesthesia.
    By 2014 my spine had deteriorated again, despite the fusion. I had Cauda Equina but the surgeons missed it. It wasn't until June 2015 when I collapsed, that neurosurgeons operated for the fifth time. After-care has been terrible. No specialist physio, no understanding of my problems. The lucky animals under the care of Professor Noel Fitzpatrick get infinitely more care than I ever did...
    So my experiences have not been great. Now I can barely stand or walk, have to use a wheelchair outdoors, though I'm housebound. In the last six years I've hardly left the house. I need my Carer for everything. 
    I've been honest about my experiences but that's not to say that you would suffer the same fate. For all we know the fusion may be the best thing for you. If you do go ahead, make sure that you have support and assistance during the recovery period. Unfortunately I did not and of course that affected my recovery badly. 
    Wishing you all the best, whatever you decide to do. 
  • janer1967janer1967 Member Posts: 9,141 Disability Gamechanger
    Hi and welcome back @Deffy19 I am sorry you are in such pain and that you are facing surgery.

    I am not a back sufferer so unable to share any experience with you but I am sure lots of other members will be able to

    Look forward to seeing you around here
  • Tori_ScopeTori_Scope Posts: 4,010

    Scope community team

    Hello and welcome back to the community @Deffy19! I just wanted to check in to see how you were doing? 

    You might also find it useful to use the search function at the top of the page to find others who have experience with spinal fusion surgery. I just tried and there were quite a few results.
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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Welcome to the community @Deffy19! How are you today? :)
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