Decisions about surgery for chronic pain

Surgery has little to offer for most people with chronic pain. In patients with pain from arthritis, joint replacement can offer excellent pain relief. Hip and knee replacements are now well established form of treatment. Shoulder and elbow replacements are not yet as reliable. Joint replacements have a limited lifespan and people are usually recommended to try other treatments first.

For some patients with pain caused by cancer, surgery can offer relief if all other treatments have failed. However, for people that don’t have cancer, surgery is rarely recommended and is unlikely to give permanent relief and could make the pain worse.

Nowadays there are very few reasons for spinal surgery to be performed and most usually relate to preventing damage to nerves of the spinal cord. An example would be a prolapsed disc in the spine, where the damaged disc or part of the disc that has broken away and is pressing on nerves resulting in nerve injury that could lead to incontinence or permanent disability. However, even if surgery is successful in preventing further damage, people may still be left with chronic pain.

A few of the people that we talked to underwent essential surgery because of compression of the nerves in the spinal cord. For example, one woman had surgery because of a rare malformation which could have led to brain damage if untreated.

Another woman had surgery on a disc which was compressing nerves, causing bladder dysfunction and a burning pain in her leg. She was pleased that the burning pain in her leg had reduced although she still had low back pain.

Several people had back surgery when it was more popular as a treatment for pain relief. Some experienced periods of pain relief varying from months to years. One woman said she had been lucky in having almost 10 years of pain relief, although she later discovered that this was not expected to be permanent.

Others had experienced no relief and were very frustrated, particularly when they had paid for surgery privately. Some of those whose first operation failed went on to have further corrective surgery which was also not successful. One woman said that you only have ‘one good chance’ with surgery and, after that, the chances of it helping are very small.

Surgery was sometimes viewed as the cure or ‘magic wand’ that would get rid of pain, even by some who knew this was an unrealistic hope.

Explains that he is always hoping that surgery will cure his back pain even if deep down he knows…

Age at interview 43

Gender Male

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After I had the second disc removed things sort of settled down, that was in 1994. And things seemed to settle down for a while but then about the beginning of 96, end of, not 90, yeah, end of, was it 90? Yes 95/96 things started flaring up again and then I had an awful lot of time off work and it took a long time, for one reason or another, I don’t know why, but it took a long time to get an out patient appointment and then I had physio at this time to try and sort things out.

But nothing seemed to get rid of the problem that I had and eventually I got to see the orthopaedic surgeon who said “Well we can either do nothing and see what happens”. Were sort of seven years down the line now and the medical treatments were beginning to change for back problems.

The surgeons were becoming less keen to operate on backs knowing that once they’ve gone in there once it was likely to lead to further problems. So he sort of said “Either we do nothing and see if it sorts itself out or you can have a total fusion, bone fusion, or we can just try this stabilisation”. So I was offered either the bone graft fusion or the stabilisation and I was reluctant at the time to have a back totally fused.

I went for this option of, this graph stabilisation, which was a fairly horrendous operation to go through, but it did seem to stabilise the lower back and prevent these discs from causing any more problems. Which it did for a while. I suppose I got 18 months to two years relief from the surgery and then it just all flared up again.
And then you said just recently you’ve had the fusion done?

In April of this year I had a bone graph fusion. That was the only thing really that was left to try to see if it would help. And I had that done at the local hospital and it was, I suppose I was in hospital for about a week. And it wasn’t that horrendous an operation or I didn’t feel it was. It’s one of these situations where the pain after the surgery is less than you had beforehand.

And although, being told that it might take up to a year to 18 months for things to settle down and notice any difference, at the moment I haven’t noticed any difference in the pain. And the fusion you don’t know about. You don’t know that the bone is there or the bolts are there, you don’t notice them.

It’s just a case of just hoping that in 18 months time things will be different. And, I think I’m probably the same as a lot of people with chronic pain, you find someone who can do something for you and you put all your faith in them and you hope that they will cure it and when they don’t you then start looking for someone else, because you think the next person that comes along will be able to do something. Although, I think, most people realise deep down that you, they will never get rid of the pain. But even if you know that you still look for someone to do it for you.

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Some people had been told that their condition was inoperable or that they were unsuitable for surgery. A woman who had been pinning her hopes on surgery was initially horrified when she found it was not possible. A man who was told he wasn’t suitable for surgery was relieved.

Was pinning her hopes on surgery and was horrified when it wasn’t an option although now realises…

Age at interview 41

Gender Female

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I think, remembering back, that when I was told that surgery wasn’t an option, I think it was something I’d been pinning my hopes on and I think I was fairly horrified. Although at the same time I had heard a lot of stories of people who had had operations on their backs and whom it had not helped at all.

There are a lot of back problems on my mother’s side of the family, shes one of seven and all of them to some degree or another have back problems and maybe three of them have had operations and it’s not been plain sailing. So I knew that surgery was a very drastic solution and I certainly wasn’t going to push for it if there was no guarantee that it would help.

The specialist said that the prolapses, the protrusions in the discs weren’t touching the spinal cord, nerve, what have you and had they been, then that would have been what was causing the pain and they could have gone in and cut off the protrusions and… but certainly my current osteopath who I’ve been seeing for eight years has also said surgery would do you no good at all, theres nothing they can do surgically to improve it.

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Was told that he was not suitable for an operation but was relieved because he knows surgery is…

Age at interview 48

Gender Male

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Well I don’t know why I wasn’t suitable for an operation but I thought, I think it just wasn’t serious enough and it wasn’t causing me like excruciating pain all the time to sort of warrant an operation. I think what was explained to me is they only operate under extreme circumstances.

If your pain is, if you are screaming in agony with pain or something like that, then they’ll obviously have to operate, or have to do something like… but mine wasn’t that bad as to warrant an operation so I was actually quite happy about it at the time. I didn’t really want an operation.

I had some people were saying to me like their operation had went fine. Other people, like my mother, shes had a couple of discs out of her back and she has been in agony ever since, just with scar tissue. Scar tissue tends to tighten up and that causes a bit of bother on the nerve as well like, so everything else I was quite happy with, not having to go through an operation and I thought well pain can only get better, it can’t get any worse, but it did.

I mean theres not much you can do about that. So it was investigations in to the pain itself sort of stopped there and it was basically doctor’s treatment after that. I got a bit dismayed at the time and that was about it really.

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Several people considered, but decided against, surgery as an option for the relief of back or leg pain. Their decision was sometimes influenced by a consultant telling them that the chances of successful pain relief were low or that there was a risk of worsening pain or even damage to the spinal cord, which can lead to a loss of sensation, paralysis, weakness and bladder and bowel problems.

Others were aware that surgery could result in scar tissue which can contribute to the pain.

Some said they would never consider surgery because they’d heard of friends and family where surgery had failed or gone wrong. A woman had read that pain relief was short-term and didn’t feel it was worth the risks.

Decided surgery was not an option because she had read that the benefits were only short term.

Age at interview 54

Gender Female

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Well, you then just get on the treadmill of, you try to think of how you can get better and try to find out what’s wrong with you. I didn’t want invasive surgery. I’d been to see… the reason I’ve seen three orthopaedic surgeons is because every time you go back you see a different one.

Theres no continuity and that continuity is quite a strain on you because you then realise that, basically, you’re just a number, not a person, and whoever happens to be around at the time, reads your notes if you’re lucky, and takes a look at you, asks you a few questions, dismisses you to see the next person. Because he hasn’t got time to see you. So nobody does anything holistically. You are just part of a process and the onus is on you, as a chronically disabled sick person, the onus is on you to find as much as you possibly can to look after you.

Otherwise you can end up going off on tangents, down side alleys, up blind alleys, you could end up having operations that you didn’t particularly want. I had to fight one orthopaedic surgeon, well it wasn’t much of a fight, I just said no. He said hed just shave a few little cells off of the vertebrae to relieve the pain. Well, having worked with children with disabilities, who have had all sorts of horrendous operations, I know what bone pain’s like and theres no way.

When that was suggested, I asked to see a neurosurgeon because, if anybody’s gonna go anywhere near my spinal cord, I want a neurosurgeon to double check him, and the neurosurgeon said that my discs bulge into a cluster of nerve nodes and it’s very, it’s best to avoid going anywhere near any of it just in case, obviously just in case of paralysis.

So I read some information and it said that if you have a fusion, another operation that you’re offered is a fusion, and the statistics show that, I think it’s four or five years down the line, people that have had fusions can be exactly back where they were four or five years ago, there may be no benefit, and the girl that took over my job in the hospital when I left, had already had a fusion and she ended up losing her job because she damaged the next disc up and ended up, you know, having another fusion. So I, personally, I wouldn’t want that.

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One man considered himself one of the lucky ones because he had been on a pain management programme which had helped him to live with pain instead of undergoing surgery. Others whose surgery had not been successful said they wished that they had known about pain management before or had persevered with other less invasive treatments.

Says he is one of the lucky ones because he went on a pain management programme instead of having…

Age at interview 49

Gender Male

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Yeah, has surgery ever been an option? That’s an interesting question. I was prob… I think I was one of the lucky ones actually because, when I was running the support group, a hell of a lot of people use to come to us, to the support group who had had operations and I think if I hadn’t have heard their stories I may have gone down their route as well because, when you go and see the healthcare professional, you put everything in their way, you know, you give your body to them.

It’s like ‘Well heres my body’ you know ‘Well do I need an opera…, well all right, okay, I’ll have an operation. And the horror stories that I was hearing, I thought ‘I’m not having an operation ain’t, is not an option. And, when I heard the lady from the Pain Management Programme talk about ways and how I can manage better, no curing me, but how I could cope better, I thought ‘I want to give that a whirl first.

So I think, if anybody’s thinking about having an operation, go to a Pain Management Programme first, or a self management programme, learn some skills on how you can manage yourself first. It may be that you may not need an operation. They always say, a lot of healthcare professionals in the pain clinics, they say to me ‘Tell your people you see to stay away from the knife ‘cos all the pain clinics, that’s all they see, people with failed back surgeries and bits and bobs like that, so stay away from the knife.

And, at the end of the day, what’s the worse case scenario is, is that you attend the Pain Management Programme or a self-management programme, it didn’t quite work for you, perhaps you may not have got the message and you do have a back operation, but look at it this way that you have the self-management skills to help yourself after the operation, like the pacing bit, relaxation, things like that. But they all say ‘Stay away from the knife. As I say, I was one of the lucky ones.

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A few people that we talked to had undergone surgery which involved operating on nerves. This type of surgery is controversial as it may destroy other sensations as well, cause weakness or become the source of new pain. A couple of women had surgery for pelvic pain, but had been advised that pain relief may not be permanent and there is a risk of worsening pain.

Many said that they had been naïve about surgery and had not looked up any information, sometimes because they were desperate for pain relief and assumed surgery was the answer.

Was desperate to have back surgery in the hope it would cure her pain. She regrets not looking…

Age at interview 63

Gender Female

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When the doctor said he was going to give me a laminectomy I have to be honest I couldn’t wait to get in that hospital. I didn’t realise the extent of the surgery, I have to admit that because that’s another thing, you know, going now people ask questions and they research. I never did anything like that I just knew that I was in excruciating pain and I had four children and I just wanted to get better.

You know, I wanted to get in there and get out again. I didn’t realise that it was such a big operation. I was in hospital, I think then I was in hospital for at least two weeks. When I came out there was no physio. That’s… I also think that’s quite funny really now. There was absolutely nothing. I just remember the surgeon coming in a couple of days after the operation, lifted my leg up in the air, because that was one thing that I couldn’t do, I just couldn’t, it’s always been my right leg and it still is my right leg today, he lifted my right leg up and said ‘Oh, that’s a success’ and you know at that time I thought it was.

And as I say, it was quite a long recovery period. I think it was probably three months before I even thought about going back to work and I only had a part-time job but I do remember going back to work and probably within weeks the pain returned. You know, not in its severity but I thought ‘Oh no, it hasn’t gone and I’m probably a bit stupid to think that it was a cure or because, you know, nobody ever said it was going to be but in my head, I think that’s one of the things I’ve learnt as well is that most people if they’ve got a chance for an operation they do think it’s going to be a cure and it rarely is.

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The advice of people who regretted not looking into it more was that others get as much information as possible before deciding about surgery. A woman who had undergone several unsuccessful back operations urged people to educate themselves and ask as many questions as possible. She and others advised checking out the success rates of the procedure and the surgeon’s experience.

Feels that having back surgery was the worst possible decision for her and advises others to…

Age at interview 56

Gender Female

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That decision which I made back in 1981 was the worst possible decision I could have made, I was referred by my GP to an orthopaedic surgeon and because he told me that he thought there was very high success rate for a laminectomy I didn’t question him sufficiently.

I didn’t have either the confidence or really the medical knowledge to and I relied on my GP to have sent me to what he thought to be the most appropriate specialist. I now know that to have a good chance of having back surgery you must go to a specialist spinal surgeon and preferably in the specialist spinal unit but those are in very, very short supply.

I blame myself terribly that I didn’t make those enquiries, I suppose I shouldn’t blame myself but if I could change one thing in my life, if I could go back and rewind the tape, that is what I would do and anyone who has ever asked me about whether they should consider having spinal surgery I have always said to them ‘Please, please educate yourself as to the chances of success, the success rate with the surgeon who will be operating on you, ask the awkward questions and if possible try and avoid spinal surgery.

Because I think when I had it done there was a much gun-ho sort of attitude, it’s now I think being appreciated that actually the success is much more like 50% and that’s on a good day with a good surgeon and that if it can be avoided it should be. I mean obviously there are some conditions, some circumstances where people have bowel or bladder involvement, they have to have surgery but if I could go back and change that decision I would work, have worked far longer with specialist physiotherapists to try and strengthen my back, to try and avoid the surgery if I possibly could.

I mean I had had physiotherapy, I had had some advice and nothing that had been done had actually helped me to be fair but if I could change things, I would very much have wished that I could have done that and had that sort of input and perhaps even been sent to a specialist rehabilitation unit where there was specialist knowledge, which is quite difficult to access on an outpatient basis but I’m sure it must exist somewhere. I hope, but I regret that decision terribly and so does my husband. You can’t go back.

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Some were happy with what the surgeon told them, but several said that information was not made easily available and were frustrated that the decision about surgery was really left up to them.

It was not always easy to get sufficient information especially about the recovery period. A woman who had taken a long time to decide whether to have a neck operation had looked up information about the technical side but had not discovered how she would feel afterwards.

Had researched what would happen in her operation but not what would happen after and how she…

Age at interview 42

Gender Female

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So I went down for surgery. I had my pre-med, went down and I was still wide awake and talking to the surgeon when he was scrubbing up and he is quite a character, and very, very pleasant man but very, very busy obviously and lots of demands on his time.

And so that was obviously, you’re put out and I remember coming round and right away I knew that this, before I went in I had started to limp. It really was starting to badly affect my left leg and I was starting to limp and I’d not long had got a new car because my old car didn’t have power steering and the actual, oh it was nightmarish, so at that point I got a new car and I wasn’t sure I hadn’t got the seat right and always looking for things other than yes there is something wrong but it was, I was walking with a limp and people were commenting on it.

And when I woke up after surgery that sensation was gone. All of a sudden, and then and that moment I knew, I absolutely knew that I had been experiencing a lot of pain and a lot of very, really uncomfortable to the point of feeling sick sensations and they were gone and I remember through my garble to the surgeon saying ‘My left sides okay’ and he said ‘That’s great. Wiggle your fingers. Wiggle your toes’ and I’m saying ‘But my left side is fine so I was really buoyant and after it wasn’t nice because I was sick and I had to get catheterised and I didn’t, although I’d researched what the operation would involve, even the surgeon didn’t explain to me what I would experience afterwards.

So I lost my voice. I couldn’t swallow. So I was limited to what I could eat and I hadn’t expected that and I had a big row of staples across my neck and I hadn’t expected that either.

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Information needs to be up to date as surgical practice and rehabilitation has changed dramatically. For example a couple of people commented that when they first had an operation there was no physiotherapy whereas now physiotherapists encourage people to get moving as quickly as possible after surgery.