Post spine fusion pain management

[ndp1978]

Hi all

13 years ago I was diagnosed with degenerative discs, facet joint disease causing immense low back and sciatic pain. I went for a disc decompression and waited for it to heal, unfortunately pain increased so I went back to the consultant, we took another MRI and to his surprise he could no longer see any disc left. He immediately advised a fusion, which I had at L4. Another 6 months of recovery and sciatic pain was still extremely severe , so I was recommended another consultant to insert a ‘spacer’ in my spine to allow for space for my root nerves. All this time I was seeing physios, chiropractors and pain management specialist as I had quite good private health cover.

Then on a visit to Disney with the family (still in pain) which I was advised by the consultant the rides would be fine (I wasn’t going to go on rollercoasters) the first ride I went on with my eldest son was a log plume, on the last drop we hit the water at the bottom and I felt my spine compact and immediately increased pain. No doubt ruined my holiday as I was now confined to the villa on my own in major pain.

On return to the UK I went to the consultant who ordered an MRI, who on inspection said ‘your case certainly is unusual’ !!?? Er, do you want to elaborate please!!

’well’ he said while pointing at the vertebrae below the fusion and nerve spacer said ‘do you see that dark line…….that’s a fracture’ !!!!!???

I was in shock, he explained that the nerve spacer on one side had caused so much pressure on the alternative side where the only support was the disc, the vertebrae took the load of the ride you were on abs fractured!!! ‘Whoaaaaa there’ not only was I was told this spacer was perfectly safe but you told me a could go to Disney and ride with no issues. Now I’m looking at all existing metal work removed from my spine and putting in a double fusion. Thanks!

So I had the double fusion, left hospital on OXYCODONE and said another 6 months should tell you if pain subsides. 6 months went by, and no the pain had not improved, sometimes worse than before. Surgically there was nothing more my consultant could do as the rest of my spine and his surgery was a success, so I was referred to pain clinic. Bear in mind I had been on some sort of opiates for 10 years.

The pain clinic we not much help apart from offering a spinal cord stimulator but only if I could get the pain relief meds down to 100mg a day of morphine equivalent which is 60mg of oxy.

This was a struggle but didn’t want to be on opiates for much longer so for down to this amount , over 3 years, and over this time my marriage fell apart and I lost my home, job, kids, everything really.

I had the spinal cord stimulator inserted And made sciatic pain worse and was extremely restrictive. It came back out. That was pre covid and I haven’t had a pain clinic follow up since.

I am prescribed many meds. For pain mainly oxycodone (modified release) 20mg per day, and OxyContin (immediate release) 60mg a day. Taking this opiate for so long means my body has built an resistance to its effectiveness and not to mention physical and mental addiction, but is the only med I have found that helps the pain.

My GP are keen for my to stop taking opiates but with no alternative, and as I need more for when I flair up, keep running out and the GP will not supply any more than my weekly/daily allowance, although I have been on 3 times the amount, so in kick withdrawals usually weekly.

I am aware of the research into opiates and chronic pain not being effective, which on average maybe true, but for certain pain patients with chronic low back pain along with sciatica opiates can be effective.

I am desperate for anyone’s advice as I feel stuck with the GP’s pressuring my to stop taking the only effective medication I’m taking.

my pain is still high and I have developed an addiction to control this pain.

My mental health is at an all time low due to the breakdown of my marriage, etc. Partly caused by my back problems and medication.

Sorry for the war and peace post but a lot has happened and I’m desperate for help.

Thanks all.

Stay safe and well x

[Nicky127]

lady

so sorry to hear your story. I share some of it, I have had various treatments over 30years+ they did prescribe some steroids after the usual drugs after operation which helped but sciatic pain is back. I am 2months post op and pain still awful so I'll be seeing surgeon again, but I know as far as surgery concerned, he sees it a success; the MRI shows the nerve is no longer trapped.

the only other 2 things you haven't mentioned he gave a low dose of amitriptyline and also a short course of steroids neither cured the pain but for short periods of time helped. At time I find a medical corset helps but i don't want muscles to get dependent

I wish there was something else I could say. Please don't give up. There must be something

[ndp1978 in reply to Nicky127]

hi Nicky127

Thanks for the reply. I did try amitriptyline at the beginning before surgery but never steroids. I have new pain coming and going all the time. The last consultant that called over the pandemic didn’t feel a need to see me, as nothing had changed. I did go to a group session arranged by the pain clinic and they are going to arrange specialist physio but I hate to say I have been here before, however try to stay positive. The latest GP has started to reduce my pregabalin as I am not sure I have ever had any benefit so I have no issue there, it’s the oxycodone as I feel it helps but I struggle to manage the prescribed dosage, sometimes feel I am a pill junkie begging the GP for extra scripts, but it’s the only medication that has ever had an effect, but the general consensus is opiates don’t help long term, or the dangers (overdose) out way the benefits. Can I ask who would manage a course of steroids? My GP or consultant?

Hope your pain fades. My consultant always said give it 6 months for the nerves to calm down before making any more decisions on further surgery.

[Nicky127 in reply to ndp1978]

If you are a private patient I would say make an appointment with the consultant, they did the op so my thinking is they should help. S/ he only gave me 3 days of steroid tablets as a short-term fix which, magically, completely got rid of all the pain for a few days. But the pain is back so it was not a long-term solution but gave me hope. Now I'm hobbling when I get up in morning and although I can walk a bit and exercise during the day', it hurts, so of course reluctant to do, so I came to conclusion this morning I must find a physio /trainer to make me exercise more. I do sleep but the amitriptyline was prescribed for that.

Like you I have to wait to see what happens before taking advice on more surgery. The major pain is in my existing knee replacement and my hip joint. But I am pretty sure both are sciatica as my shin and foot have the typical burning pain, so far managing to get through day with codeine and paracetamol

I am so sorry I can't remember the name of the steroids. Yes, I too have read it takes 6months to a year for pain to fade

Do keep in touch it helps to know it's not just me. Good Luck

[CrazyhorsesFIGARO]

So sorry to hear your story, parts of which I share. Following my spinal surgery in July 2020 my immediate pain, particularly from the Sciatica seemed much improved and the surgery was considered a success. As I was 77 and without the ability to stand or walk without help I was blessed enough to get a care package with carers coming in four times a day. Of course all this was going on with the backdrop of the pandemic. A couple of times I was told a scan had been requested and I finally got a scan at Addenbrookes about 10 days ago and I hope to be able to talk to someone about it soon. I still suffer the burning pain too. one of the greater concerns to me is that the pins and needles, which I had spoken to my doctor about on many occasion over a period of 2 or 3 years prior to my surgery, started to be numbness, which started in my left thumb has now become very noticeable in my left hand and arm, my left leg and foot, my right lower leg and foot and my right hand. Nobody wants to talk to me about it, which is very frustrating . I, too , find it very comforting to find I am not the only one.

Look after yourself and keep your chin up. I know it's easy to say. I am so surprised that there are so many of us, and because there are I hope we will be able to encourage each other.

Stay as strong as you can ndp1978