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Long wait for spinal surgery NHS

Posted , 7 users are following.

angie42070
angie42070

hi all, I have been experiencing severe pain and pins and needles in my left leg for 2 years. I have a complex list of problems with my spine, and have been having foraminal and caudal epidurals for 6 years to help manage my pain. My primary problem is a herniated disc at L5/S1 and a bone spur, both of which are impinging on the sciatic nerve. I also have an old compression fracture at T12, with spinal stenosis above and lumbar facet joint arthritis. 

I have been under a Consultant Orthopaedic Surgeon for 8 years, and last July he said I needed a Posterial interbody lumbar fusion but he wanted to try one more epidural. This was done in August 2014 and did not work, I had to fight to be reviewed and finally saw a Registrar in October 2014. He said I needed an up to date CT scan, and this was done urgently 2 weeks later. Then my consultant went off sick. I had to see my GP to force a review and was finally seen on the 26th Jan this year. I was put on the waiting list, told my operation would be in April 2015. On the 26th Feb I had my pre op, but a week later the Consultant went off sick. I'm now left with the prospect of not having this operation until July/August 2015. 

I want to cry, I can't stand for more than a couple of minutes as my left foot goes numb, I'm in pain all the time and every medical check is showing more and more nerve damage. I've lost my reflexes, have a horrible burning pain in my hip when I walk and have become withdrawn because I i can't sit or stand for long without horrendous pain. I'm still working full time because I'm in a job where I can stand or sit when I want, but I'm struggling with that now. 

Has anyone else having problems with needing surgery but on a waiting list? I'm taking gabapentin 300mg x 3 daily, tramadol on weekends and co codamol during the week. I'm a tiny 8 stone and I try and keep up with daily exercise of yoga/Pilates and swimming. 

Would be good to hear from anyone else in a similar position, my family are supportive but can't understand the constant pain. 

Thank you 

0 likes, 23 replies

23 Replies

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  • maggi7
    maggi7 angie42070

    Posted

    Angie; NO-ONe who doesn't experience the pain will EVER be able to understand it. That's the truth! I declined fusion surgery some years ago, because of the tremendous risks involved. I suffer endless pain. There's never a moment that I don't have pain to one degree or another. At least, it's tolerable, but there are ever-increasing times when it's beyond my endurance. It burns its way through my lower back, into my hip, leg and foot. I try to cope, I sometimes push myself beyond the barrier to participate in events - even to try to be part of, 'normal,' life. But, by GOD! I pay for such things! I've just had the most momentous week. Had the opportunity to be part if history in the making and I pushed my spine beyond all endurance. Ignored the pain, maxed on meds......I'm paying for it now. I'm in utter agony and crying with every movement. Family can sympathise to a degree, but, in my own experience, sympathy is limited by their  not experiencing the devastating pain inflicted by degenerative spondylolisthesis.
    • angie42070
      angie42070 maggi7

      Posted

      sorry to hear that you are in so much pain. I feel like that and I don't even manage to do anything other than strip a bed or wash up. Well done for achieving a historical event. We can find the strength inside us but pay for it after. 

      I've heard really positive things about lumbar fusion and can't wait to have my life back. It's great to hear from so many of you that understand the misery of chronic back pain. 

  • matt67982
    matt67982 angie42070

    Posted

    Hi I had spinal decompression and partial disectomy surgery last june 2015. I had to fight for 5 years and had lots of mri's ay different hospitals. I was in agony the whole time. Taking gabapentin 300mls. Etodolac 500mls and prolonged relief morphine (MXL) 300MLS a day. It took 5yrs and 4 hospitals before ffinding surgeon to operate because my mri's all showed only slight compression which to the drs ment I shouldnt be in pain but I was and when they finally oprrated they found I had 2 L5 root nerves (rare) that were caught and bing pressed on by my disc and bulge. Since ops I have been ok until last month when pain started up again. Ive been told it could be permanent dammage from waiting so long for op. Do u think I can make a complaint.? All I want is life back.

    Try taunton hospital. And ask your dr for MXL.

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