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I have back, leg and nerve pain following a spinal fusion

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Catty2
Catty2

Hello, I'm knew to this site and hope that someone can offer me some advice or support. I have a lot of background, so hope you will bear with me.

i had a spinal fusion at L4/5 in 2000 following a failed discetomy and lumbar stenosis. This proved very successful - I had years of relief and returned to work as a primary headteacher. In 2010 I had

a hip replacement due to arthritis.Then in May 2014 I developed nerve pain in my left leg and into my foot and then difficulty sitting. This fitting pain became very severe. I had loads of physio but nothing worked. Finally my GP sent me for an MRI scan which showed some disc degeneration above and below the fusion. Then I moved to another part of the country in the north west where the back care is supposed to be excellent. Using my BUPA I went to see a spinal consultant who authorised another MRI scan, this time a more thorough one. It showed significant degeneration, particularly below the fusion at S1 where there was stenosis is and a disc protrusion causing nerve pressure. At first he recommended decompression surgery, but then backed down when I asked if this would cure the awful pain I had when sitting. It's like constant nerve pressure running down my leg and into my foot and walking, sitting and standing are all very painful after a few minutes. This consultant recommended a nerve pain consultant who offered a nerve block injection in my lower spine. I had already had 2 of these in my previous location through the NHS but hey didn't offer any relief. This new pain consultant who was considered very eminent in his field, but has now retired, said that the other nerve injections hadn't worked because they hadn't been carried out properly. I'm not sure I believe him now because the nerve block he administered was very painful and again, unsuccessful at relieving my pain. I ask have severe arthritis in my left shoulder and am being treated for this with deep nerve block injections. However, it is my sitting, back and leg pain which really concerns me as the pain is constant and I cannot get comfortable or pain free in any position. I have given up exercise because it hurts too much, so muscles are wasting, which I know doesn't help.

My questions are:

Should I seek a second opinion from a different spinal consultant privately as going through NHS takes so long? 

Has anybody else suffered similar pain and if so can they offer any advice or support?

PS I have had so much pain trying to sleep and convention or opioids don't help so I've been taking sleeping pills to help get some sleep, but now these are posing their own problems. 

 Thank you if you've managed to read all this, but I am really desperate for some advice as no one seems to understand what I'm going through. I am single with friends but no real partner to off support. 

Many thanks,

 Catty2

 

0 likes, 5 replies

5 Replies

  • cerys.aine
    cerys.aine Catty2

    Posted

    I'm sad to hear you're in such pain. I have not had surgery but lumbar stenosis and multiple sites DDD plus thoracic scoliosis and cervical arthritis and facet joint dysfunction. Also soft tissue problems. I just thought to share that it was several drs and several months housebound. That nerve pain down the leg into the foot is awful. What the last dr noticed was something everyone else missed - the SI joint. He sent me for PT with an SI specialist and it helped so much. The PT said many people she sees are wheelchair by time drs consider the diagnosis. Idk if it applies to your situation or not, the hip replacement made me wonder about pelvic alignment...just a thought to look into it. When my SI is inflamed dr does injections into the joints takes about two weeks increased pain but calms down most times. For the other pain I have lidocaine patches and TENS unit. I did not get relief from hydrocodone but hydromorphone helps - different receptors and it can be individualized response. Take care. 
    • Catty2
      Catty2 cerys.aine

      Posted

      Many thanks for your sympathetic response and for sharing your situation with me. It sounds as if you've now got a handle on your pain control and are getting the right support and advice.   I think my problems are a result of my fusion and my hip replacement was definitely due to arthritis. I will,try harder to follow professional advice and do more as I've given up recently. I have tried a TENS and patches, but unfortunately they don't help. I think our problems are different, but it helps to know that someone understands the nerve pain. I must try and strengthen my muscles even if I have discomfort sitting. Thank you again for responding and do take care as well. Best wishes, Catty2 
    • jannie11
      jannie11 Catty2

      Posted

      Hi Catty, I too suffer from serious pain when sitting, and to a lesser degree when standing.  I have been struggling for 8 months now, partly due to our health system here in NZ but also to me taking time to consider the option of surgery.  I have 3 badly degenerated discs in my lumbar spine, and one vertebra which has moved out of place by 5cm.  So I am well qualified to understand the pain you are in and I really do know what it is like for you. I am 66 years old, unable to work, unable to volunteer for any organisations or to socialise except a daytime visit to a cafe or spending time with my family.  I am currently under the care of the Pain Clinic here in Auckland, and while they are helping me considerably by changing and increasing my pain medications I really don't see any future unless I have surgery, the pain and exhaustion is still overwhelming.  And 3 discs to be replaced is a huge operation and the risks are serious.  But with the degeneration not going to get any better, feeling dopey on the medications I don't think there is any other option for me.  The Pain Clinic is also giving my physio, where I use a yellow coloured wide rubber strip knotted together and placed over a door which I then shut and pull on the band with both hands, facing towards the door then again with my back to the door.  I have been instructed to very slowly increase the number by 1 each way per day, until the physio deems I can graduate to the next colour band, 4 colours in all, each of a different strength until I am able to do 60 - 80 of the strongest band (blue).  I believe this is to gradually and repetitively strenthen my core, thus helping my spine.  I am also attending a Pain Response Workshop weekly for 8 weeks, learning mindful thinking.  Not sure this will help but am going anyway, it helps fill in my days if nothing else! So that is the short version of my story.  Dotake good care of yourself.  Best wishes, Janis (jannie11)
  • myc1
    myc1 Catty2

    Posted

    Hi Catty,

    Boy, you sure are going through it. I had 2 discetomies onL4/L5 and neither worked so I had the spinal fusion there and it gave me immediate relief. I think the pain you are experiencing is sciatica. The sciatic nerve is the longest in the body and the pain is simply excruciating as it affects the entire leg (or legs). While opioids may help a little, they are not very effective on nerve pain and your doctor should discuss the choice of nerve pain meds with you. I underwent every treatment imaginable to ease my pain - physio made it worse; deep tissue massage made it worse: traction made it MUCH worse. I'm not sure what decompression surgery is. I considered decompression traction but several chiropractors told me they had had no better success with the (expensive!) decompression machine than with regular traction so I gave that one a miss.

    About those spinal injections. I have had both the cortisone injections into the facet joints in my lower spine and I've had the spinal blocks they sometimes give to mother's in labor. They were all moderately successful but in every case the doctors used Xrays to guide the needles. Three Xray machines each time. I had one doctor in Emerge just go in 'blind' and I lost count after nine separate spinal injections. I guess that was his version of 'carpet bombing'. Sadly, it barely helped so I guess the lesson is to go to someone who uses Xrays to guide the needle.   

    With the MRI showing further degeneration (dear old Old Age) your battle is with artheritis which is inflamation within your body causing swelling in your joints. One suggestion that I have seen work wonders is a tablespoon of Apple Cider Vinegar, a tablespoon of honey and a couple of tablespoons of hot water. Drink it every morning (add a bit more honey it it is too sour). I was given this recipe by a man I knew who was so crippled with artheris he couldn't button his own shirt, drive his car or shake my hand. Ten days on the Apple Cider Vinegar concoction and he was almost back to normal. Maybe try it for month, Catty, see if there's any improvement.

    Failing that, I'm not sure where you live but is medical marijuane an option? I live in Canada where medical pot has been available for several years and the Federal Government is soon going to legalize the recreational use of pot in Canada. I'm not advocating breaking the law, but if you haven't tried it, you may be suprised how darned effective it is in blocking pain.  

    I hope you find some relief from this debilitating pain, Catty.

    All the best, Catty. Stay in touch and let us all know how you are doing.

    myc

        

  • Laura3333
    Laura3333 Catty2

    Posted

    Hi Catty,

    You have virtually told my story.

    Slipped disc,followed by a laminectomy, where bone was removed, a spinal fusion L5-S1, many years ago in LGI.

    This was unsuccessful, and for years I have been chasing something, anything that would help.

    Like you, so many spinal nerve blocks, steroid epidurals, a failed attempt to put in a spinal nerve stimulator in two levels.

    I can't even begin to count the amount of procedures I had, unfortunately none worked.

    The last tIme I went to the pain clinic, a couple of years ago, with the ongoing back and leg pain, now neuropathy in both lower legs, and base of spine, also between legs--- my Dr thought it was cauda equina.

    I was sent yet again for an MRI! Then to a neurologist, then to a spinal surgeon, the last one told me I had inflammation of my spinal nerves, no disc spaces as such in L4-5, L5-S1, arthritis in my spine, cervical, thoracic, and lumbar spine.

    I have had Meralgia Paraesthetica for years, which I accept I have to live with.

    In the last three years have had both knees replaced, the second one last August, and was told I now have arthritis in my hip.

    Why I am going into this in such detail is because, this could just give you another option to try.

    I am not good with strong painkillers, so when I had my first knee replaced, I was given Naproxen plus Lomeprazole. Anti inflammatory plus PPI.

    I have taken Lyrica and gabapentin before and found them not very helpful.

    But, combining Gabapentin and Naproxen does really help, withe the tingling, hot and cold sensations, pins and needles and terrible nerve pains down my legs.

    I now realise, the inflamed nerves in my back, the sciatic nerve on both sides, can be calmed down by taking this combination of drugs.

    I am currently taking 200 mg Gabapentin, three times daily, have been up as far as 800mg X 3 times daily, but spaced me out.

    I have ongoing pain every day, but mange the pain by upping the gabapentin, as and when on a daily basis.

    It doesn't take the pain away, nothing will in my case, but it dulls it so that I can function.

    My balance was poor after my knee replacement last year, so I started going to Physio led balance classes, which was helping me enormously.

    I surprised myself with how much I could do.

    But had to stop, when I had prolapse surgery.

    Some days the leg pain is so severe it is unmanageable, I add diazepam to the mix, and it helps.

    I realise there is no cure, I have to live with this, and once I stopped trying to find the impossible I cope a lot better.

    My story is long and not very inspiring, I can't give you any hope of a cure, but I have come to terms with it mentally. I hope you can do the same and got the best pain relief for you.

    If you want to inbox me about anything, just send a PM,

    Al the best, X.

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