I can't thank the NHS enough

I can't thank the NHS enough

What an exhausting day I've had on a rollercoaster of emotions.

Background- spondylolisthesis L5S1, bulging discs, osteoarthritis in facet joints in lower back and fibromyalgia. Had a Caudal Epidural three weeks ago but it only gave me pain relief for 6 days. Now worse than ever, can't walk, drive, sleep, work, care for my parents or myself. I rang my Consultant's secretary to explain all of this last week.

After two hours sleep I woke up feeling suicidal. I rang up my Consultant's secretary to get a response & I was on his 3 month waiting list for an appointment. *tears, many tears* Then she said "oh hang on, there is a gap this afternoon, can you get here" oh yes!

So we had a chat about what had gone wrong, quick exam, then he went on to explain that whilst my symptoms reflected what the MRI showed, I was exhibiting too much pain. Well here we go I thought, he'll blame Fibro and tell me there is nothing that he can do......... but I was wrong, he said the Fibro was making the pain much worse but I still shouldn't be suffering that much pain!!! We might have amplified pain fellow Fibro sufferers, but we still shouldn't be in any pain at all! I could have kissed him!

So he jiggled my meds around so that I could come off the Oramorph and hopefully get some sleep. And he offered me a Nerve Root Block (has that helped, or not, anyone else here?)... in May! More tears & I put myself on his cancellation list. Well by the time we got home, an hour later, I had an answer phone message offering me a cancellation date on April 5th!!!!!

In little over one month I will have had two procedures, follow up physio and a consultant appointment. Let's just hope it works! Any thoughts or experiences with a Nerve Root Block will be gratefully received. Thank you and best wishes xx

If you want to read more of my ramblings about Horses, Health and Happiness my blog can be found at soloambition.wordpress.com

9 Replies

oldestnewest
  • I too have multilevel disc degeneration, degenerative facet joint disease, lumber spondylolisthesis, which a lot of medical pepole mix up with spondylitis which annoys me, foramenal stenosis and nerve root compression, my pain at times is excruciating and I have trouble standing and walking, I refused injections a sthey are only temporary and I wa sworrid about further complications.

  • Oh it sounds rough, you're not a horse rider too are you?

    I don't have a choice but to have the injection, I can't go on like this.

    Best wishes

  • with two slippages, no I wouldn't be able to ride, I used to years ago but a load of things I cantdo now sadly

  • Hi fedup

    Similar list of woes here, DDD -> stenosis, scoliosis, spondylisthesis, nerve root compression etc. Had to have emergency laminectomies (lumbar L4/5 and cervical) and a total of 5 nerve root block injections. Don't have fibro but have had severe RA for 17 years.

    The surgeries were required due to spinal cord compression following disc herniations. I woke up one morning after months of pain and couldn't walk or stand up. First one made lots of difference but then a month later woke up and couldn't walk again. Second surgery was in Nov 2015 followed by the injections over a 4 / 5 month period.

    Each injection made a bit of difference and about 5 months after the second surgery I decided that I needed to do something about the muscle wastage that had occurred and took myself off to a specialist personal trainer at the gym and have been going ever since.

    It was extremely hard work at first and also very painful, but whether from the exercising, the root blocks or just time (or probably A + B + C) things have improved a lot, albeit slowly.

    I no longer have sciatic pain which was both legs down to toes and constant for 9 months. I am not totally back to normal however, i still have balance issues and still use sticks to walk any distance but I am still improving. I can walk better now than I could even a couple of months ago and it's getting better. I've been told that it will be at least 2 years before I know how much recovery there will be. I have a (permanent?) drop foot and my toes are extremely painful and curled up, but better than sciatic pain for sure.

    With guidance from my PT I learnt what the different pains were, such as muscle pain in the gluts (buttocks ☺️) and legs, and how to deal with it. For muscle pain trigger point massage has helped massively - using a roller and learning the technique was very helpful.

    Doing daily stretches to help keep the spine moving and loosen up tight hamstrings etc has helped massively.

    Having much, much stronger core, leg, stomach and back muscles has again been a major help and I'm hoping will help protect my spine going forward.

    So for me the injections have been a useful component of the whole recovery, as has the gym and none of it would have been possible without the surgery (and to a lesser extent the nerve blocks).

    There are risks with all of it, there can be complications following any invasive spine procedures that can leave you worse off and beyond help. But sometimes you have to take a risk IMO. And it takes a long time, be aware of that.

    Good luck, I hope it works out for you it's really not a nice place to be and has hit me quite hard emotionally also (after eventually getting my head around having RA and all it entails).

    Ade

  • Hi Fedup!

    I have all the issues you have except for the spondylitis. Instead I have something called Bertollotis Syndrome. My specialist called my lower back a dogs dinner!!

    So, I had 15 facet joint injections which did nothing for me. Trigger point injections - nothing again, and an epidural which again, nothing. I seem to have a problem with steroid and pain relief in that they don't work. This fits with my EDS diagnosis- just to be awkward!

    In 2013, I had a microdiscectomy on L5/S1. The disc had ruptured into my spinal canal causing spinal stenosis and excruciating pain. The surgery went well, however the damage was done. I'm still in pain.

    I think it's worth trying anything and everything you're offered if there's any chance of reducing your pain.

    Good luck!

  • Hi

    I have spondylolisthesis so one vertebrae has shifted forward or backward by 10% and trapping the nerve. Surgery isn't an option because of fibromyalgia, they would only have to touch a nerve and permanent damage would be done.

    I just have to hope that this nerve root block works.

    Keep well

  • That doesn't sound right? I don't think it'll be because of the fibro. Your fibro is probably caused by your back pain, like mine is. Could you get a second opinion from a neurologist?

  • No I trust the Consultant that I have, he is in pain management so he knows his stuff.

    Fibro isn't caused by back pain, no one knows what causes it. As Fibro amplifies the pain signals to the brain I can't risk nerve damage because the pain will be unbearable. Also with the shift only being 10% it is worth it.

  • Unfortunately my consultant doesn't believe In fibromyalgia he blames my all over muscle pain on (multiple joint tendinitis overuse of muscles) I have a shoulder impingement bursitis and epicondylitis hypermobility, and scoliosis in addition to having no synovial fluid in my large and small joints due to muscle weakness/loss.

You may also like...