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Rheumatoid Arthritis

Surgery for rheumatoid arthritis - introduction

An important thing to bear in mind is that nowadays medication taken soon after diagnosis can slow the progression of joint damage and lessen the need for surgery. Disease Modifying Anti-Rheumatic Drugs (DMARDs) and biological treatments (anti-TNF therapy, rituximab and others) have made a big improvement to the way rheumatoid arthritis can be treated. These drugs tend to stop the gradual destruction of bones and joints and reduce the need for surgery. For people who have had RA for a long time (before these drugs were available) surgery may still be needed as the damage to bones and joints has already been done.

Half the people we interviewed had needed surgery, some only one or two operations but others, who had lived with the disease for many years, had several replacement joints. 

 

Pat was diagnosed in 1982 at the age of 25 and talks about the many operations she has had since...

Pat was diagnosed in 1982 at the age of 25 and talks about the many operations she has had since...

Age at interview: 54
Sex: Female
Age at diagnosis: 25
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In 1988 I had a hip replacement cos I really couldn’t walk 5 yards at all. I was OK round the house, round the kitchen, you know leaning little, I just couldn’t walk down, I couldn’t walk down my hallway and it’s probably what fourteen foot or something. Me legs shrunk to about that much, I don’t know how deep that is, you know, when you put your knees together, that knee was dropped, that’s how much I’d worn away, the joint had worn away and I had that done in the January of 88 and that was quite successful, touch wood, I’m still got the same one anyway. And then in 97 well me toes all started to get real big bursars on them and things like that and I had, I had the toes straightened and a few other pins put in me toes and then 2 years later, 99, then me left hand had really, really gone over like, really down like that so I had to have them, and they’re plastic implants, those now. So it is much straighter than it was although you know, it doesn’t look like but it is much straighter and although there’s not much, there’s not much bending in them he says, if you leave them too far, they’re unrepairable. Once they’ve really gone over too far, those joints like that, we can’t get your fingers back in line. So you know, obviously I went along with that, so that was 99. 2004 that finger had a really big nodule on it that I kept knocking, you know, and I just said, “Can you take the nodule off?” and the Consultant said, “No,” he said, “A new joint,” but he said, “I don’t think it’s going to be successful because of your other problems,” but the Occupational Therapist who works with him saying, “Well yeah I think she needs to go have it done.” She persuaded him just to do one joint and not them all. So I also, I’d say, it’s probably not bad , it doesn’t bend, you know, it doesn’t bend much but it’s alright and yeah so that’s it really. I do thing these are going actually and I’m sure within, within the next few years they, see if I relax them, they’re just going like that. So I’m probably need to have them done but I’m trying to put them off because I am right handed so there’s not much I can do with me left hand you see. I can’t lift and I can’t grip and I can’t do anything and I know once I have my right hand done, I’m going to be really, really not be able to do anything, you know.

 

Some people were happy to have surgery to get rid of their pain, whereas others did not want any unless it was absolutely vital and tried muscle strengthening exercises to avoid it. Others knew that because of their age and the fact that prostheses wear out after a time, that they would need further operations so chose to wait as long as they could. The technical advances in prosthetics reassured people that revision operations could be successful.

Two women chose to have a second consultant's opinion to set their minds at rest that surgery was the right course of action. Having confidence in the surgeon's ability helped people face the operations. One woman felt it was important that the surgeon was not only specialised on a particular joint but also had experience with RA as well as osteoarthritis patients.

Some people wanted to know as little as possible about the operation, and one woman went into it as a positive experience.

 

Explains feelings towards her joint operation, not wanting to know details and seeing it as a...

Explains feelings towards her joint operation, not wanting to know details and seeing it as a...

Age at interview: 38
Sex: Female
Age at diagnosis: 21
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But my knees were, oh horrendous so but no I was I didn't want to know about the operation it was one of those people, some people want to know everything about it, every little detail and watch the videos and stuff and no and I've got a partner who's gone through things and the infection side of things, and I just thought I'd rather put cotton wool in my ears and rather not know about certain things. 

But no I wasn't fearful, I, it was funny, the more operations I had the more I didn't look forward to it. I looked forward to it in a positive way, I'd make out, it's funny, I used to go in to get a, it was like I was going in for a makeover, I treated it as that, so I'd have a new joint, so I'd have a new outfit to come out with and when I had my knees, when they were doing my knees, I hadn't worn trousers for a long time and so to have a pair of nice black trousers on when my legs were straight, that was, it was just fantastic, so it was like a glorified plastic surgery [laughs]. So I tried to be positive and I'd do things within the hospital, I'd take things in that I'd enjoy doing. 

So rather than sort of think about what the operation was going to do and how poorly you were going to be for a few days through that I'd sort of rather take, I'd take in some bits and pieces I was going to do or read, or catch up with friends with letter writing and that so I'd look forward to it in a way, as though it was a bit of a break. God, I can think of better ones but you know, but that was okay, yeah. 

No I wouldn't be frightened at all about having a joint replacement. It's funny it's such a major thing, and you think they're chopping bits off you and putting metal in you and you know, you sort of say, in some sort of subconscious way you're saying bye to the old bits and hello to the new bits, you know, and it's a funny barmy way you go on with, but you know, I've done far more with these new knees. It's funny before I'd gone in for the knee replacement I thought, I was out in the garden, and I thought 'Well it doesn't matter about this knee anymore now, it's going anyway'. So I was there, and I thought if anyone could see me trying to dig a hole and I felt in absolute agony and I thought, it was just, the sensation was it doesn't care, it doesn't matter now, it's going this week [laughs]. So but it was quite funny, but they've been brilliant.

However, others emphasised the need to ask the surgeons questions about what they were going to do. One woman particularly wanted to know how it would feel in the weeks after surgery. Another said hospitals made her feel vulnerable and the formal atmosphere made it hard to ask the consultant all the questions she would like. Some participants had talked to other patients and heard worrying stories of similar operations that went wrong.

 

Feels surgeons could explain more and patients should ask questions about the planned operation.

Feels surgeons could explain more and patients should ask questions about the planned operation.

Age at interview: 53
Sex: Female
Age at diagnosis: 30
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I think they need to tell you, I don't, I think surgeons I think they may be better now than they were many years ago but I think they, they don't always tell you as much as they could do. But I think it's also in part the patient's fault because I don't think patients ask. And there is, there is a certain element of not wanting to know too much but needing to know enough to be able to help yourself. I mean my hip flared when I had my knee done. 

My hip flared quite badly and so that held up the progress on my physiotherapy on my knee and getting it mobilised because my hip was so painful and even with things like Pethadin it just wasn't really  stopping the, the pain. And then the surgeon explained to me that, you know, when, when he did my knee of course they got, the get your knee up by your chin and they're banging the metal in and they're sawing bits off bones and, and I'm thinking, 'This is too much information!' [laughs].  So, you know, but that explained why my knee, my hip flared, because my hip isn't used to being put through that kind of gymnastics. 

And so things like that, you know, you, you think, 'Well maybe he might have warned me about that'. Because I had, you know, two nights of no sleep at all and it's, nights are long in hospital when you're in pain and there's nothing much that they can do about it. So yes, they, they, I think they could probably give you a bit more information at times.

Several people had surgery privately mainly because of the longer waits in the NHS or because they had health insurance. One woman, who had 10 operations in all, described how for aftercare for one operation she was moved to an NHS ward with more experienced staff.

 

Was very glad to have moved from a private room to an NHS ward after her hip operation.

Was very glad to have moved from a private room to an NHS ward after her hip operation.

Age at interview: 51
Sex: Female
Age at diagnosis: 27
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A lot of the other operations, being as I had them privately, I was in a room on my own so I didn't have that. I didn't have that support and help until the, until the replacement of the replacement hip that I had 3 years ago. That I had the operation in a private capacity but I was then moved into the national health ward because the rheumatologist considered that the national health ward was much more able and experienced in dealing with rheumatoid arthritis and he thought it would benefit me if I was cared for there in the days after the operation and he was right.

It was, it was better in a lot of ways to be in that ward. You don't have the, you don't have the privacy of your own bathroom which after a major operation is, is a help. It is a help to have that but on the other side the nurses were more experienced. I had more help. They were, they were much more used to people with my condition and how to deal with it and I had other people around, not with the same form of arthritis, but with various other things, and that helps, it helps to have company. You have the support of other people. So and you're not so cut off when you're in a national health ward, you know, you're feel that you're not isolated in your little room. Yeah.

So bearing in mind that you may have to have, you know, further replacements, 

Yes, yes.

'what would you say the advantages and disadvantages, which would you choose?

I think provided I can be sure that the surgeon is a surgeon of my choice, I think that's the very most important thing to me. bearing in mind that revision operations are less straightforward than the first replacement operation is. I think it's really important to have a surgeon that you can feel confident, that can make a good job of it. So provided that it's a surgeon that's been recommended and that I have faith in I think I'd be entirely happy to have the operation under the National Health. 

Two women were shocked by the number of operations they required when they saw the surgeon. People were nervous going into hospital and scared to death, petrified, frightened of the operation and worried that they would not wake up from the anaesthetic. Several people were afraid of being 'put to sleep' and had a spinal block anaesthetic and epidural rather than general anaesthesia. Some people confided their fears to friends rather than family, so as not to worry them.

 

Was shocked at how many operations the surgeon thought she needed and wished the wait were shorter.

Was shocked at how many operations the surgeon thought she needed and wished the wait were shorter.

Age at interview: 53
Sex: Female
Age at diagnosis: 20
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Yes, Well it was a bit of a shock, bit of shock about the arms and the elbows because I went to see a surgeon to take off nodules on my elbow, which was the reason I went to him, was sent to him, and once I was there he said, oh yes, we can, we can do this, we can do that and we can give you this and you know, I was sort of shell shocked when I came out of there, thinking oh I only went in to have [laugh] and he's gonna make me bionic sort of thing, you know, that's how I felt. But after thinking about it I thought well you know, you're not going lose anything by it so he seemed pretty sure that it would be an improvement, but then they send you away and you have to wait a year. 

I was gonna say so how long have you got to wait?

I saw him last March and apparently you have to wait, you have to be operated on within a year, well the hospital's policy apparently, so the year is now up and I'm waiting to hear when the first operation is gonna take place. Apparently they're gonna, it's gonna be three, for the elbows and the hands, it's gonna be three operations, with six to nine months between each, each operation.

I think that anybody who's going have an operation has got concerns about it. I will just be glad when it's over. It's the, it would be fine if like you could go and they'd say yes you're going to have an operation and they do it within a month so you haven't got, I think the worst part is having so long to think about it. Because you get yourself, you think, 'Yeah right I'm going to have an operation' and then it just goes on and you've got more time to, to think about it and you have more time for people to say 'Oh, so and so went through a terrible time'. And, you have to hear all this and you really don't want to hear it. But, no, just, I'm optimistic about it and hope it will be better. 

 

Had her ankle operation under spinal block because she doesn't like general anaesthetics nor too...

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Had her ankle operation under spinal block because she doesn't like general anaesthetics nor too...

Age at interview: 43
Sex: Female
Age at diagnosis: 24
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I don't, I don't like general anaesthetics, general anaesthetics! and a few years ago I had a one operation because you probably hear, I cough a lot so, I'm, I'm asthmatic. I had one of my operations done under a spinal, a spinal block, being awake. So I managed to persuade the anaesthetists for all these operations to let me be awake so I had a epidural and a spinal block. So they make me a little bit sleepy.

So that was the only thing I was worried about in case he wouldn't do it because going back to my, my arm, my line problem, that's the problem I have because if they couldn't get a line in to me to do the epidural and that. They wanted to put me to sleep and that was what I started to panic about more than anything. But I have no worries otherwise. I mean, I'm quite  I just like to go in there and get it done. So I don't like fuss, I tend to send my husband away as soon as I get there because I want to be, I want to treat it as like it's something that has to be done and that's the way I do it. 

But that's the way I have to, that's the way I can handle it. If anyone starts being sympathetic and feels sorry for me than I'll just fall apart and get all upset. No I didn't mind too, I was more concerned about the after period, knowing that last time I was slightly depressed during the, the time I was at home. I was worried that, that would happen again but it's been very different from last time so I don't know why, I have no idea why but it's it's been easier this time. I've been more mobile as well, earlier than last time.

 

Had joint replacements under spinal block anaesthetic rather than general.

Had joint replacements under spinal block anaesthetic rather than general.

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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The first time I was relatively active minded I like to know lots about everything. It was interesting seeing what they do and people flitting around you and you are the centre of attention and I always like being the centre of attention [laughs]. It didn't trouble me, my father was, as I say, horrified, you know, the thought of me being, laying there awake. But somehow, it seemed to me as less of a big deal, even though you'd find that difficult to believe with surgeons and hammering going on every minute, but it seemed somehow, because I've spent most of my life lying on my back, while doctor's pulled this and pushed this that way and the other way.

It seemed like less of a, less of an operation, more of a procedure then, if I had it done that way. It is difficult to getting in, the spinal in the first place, you have to curl up in the fetal position and that can be of difficult. And you're always under the threat, and it was threat to me of, if they can't get it in, if they can't find the right space in the spine for it, then you have to have a general anaesthetic. They have to put you to sleep and that was always a, as I say, a threat for me. 

But no as I say, the last, the first two, it was you know relatively trouble free. It varies a little bit from time to time. The first time I was a little bit worried because I could wiggle my toes and I'm lying on the operating table and I said, 'I can wiggle my toes, is the OK? Does that mean I'm gonna, you know, they're gonna cut into me and I'm gonna feel it?' 'No, no, that's fine.' Just depends on how much of the juice they give you. 

But the second time, I was literally paralysed I couldn't move a thing and it really, it's not a very pleasant feeling at all, you know. You trying to move your foot and it just won't move. So that was a bit unsettling. But the first two were fine. The last two, I had believe or not, some pain 'cos they put a, I presume they still limit the blood flow, they put a tourniquet on the top of the thigh and obviously towards the end of the operation, and particularly on the last operation, where they, because my bones are so soft they broke my leg, and obviously they had to put a nail in my leg and that too longer. So I think the epidural was literally was running out. So it was, not stabbing pain but more of a dull ache, that wasn't very pleasant, the last twice, toward the end of the operation.

Pain relief after the operation was given by injections, epidural and intravenously via a drip. Three women who had epidurals all had problems with delayed or only partial pain relief.

After an operation, having no on-call nursing support at home can be worrying. People felt less safe being on there own and worried about falling and the practicalities of managing day to day. One woman was very uncomfortable getting home after hip surgery' she sat with others in an ambulance that went on a round trip to get home rather than having a stretcher style ambulance direct.

Scars were not mentioned much but one woman had been horrified at the scar at first but later was not too bothered. Another had to have some scar tissue removed several months after surgery and used to hide her scars but now felt it was part of what she had gone through so why should she. Using silicone patches helped one woman make her scars paler. Another showed family and friends the scar to 'prove' she had had major surgery and therefore felt entitled to moan at times.

 

Didn't like her scars and ate lots of Vitamin C rich fruit to heal them.

Didn't like her scars and ate lots of Vitamin C rich fruit to heal them.

Age at interview: 40
Sex: Female
Age at diagnosis: 2
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I also wasn't too keen on the scars either because I wasn't very old and it was a psychological, I felt a little bit disfigured by them, I still don't like the scars now but friends say that they're not that bad, I don't know what you're worried about but to me I didn't like the, the scars, I didn't like it when they actually showed it to me afterwards I've only ever seen hip replacements healed. 

So I'd not seen what it looked like before it healed and when they actually showed it me that upset me and I made them keep the bandage on it so I couldn't see it, and then I became obsessed with healing myself and making the scar go back to, you know heal, and I read all these books on fruit, what sort of fruit is good for vitamin C for healing and I had, what did I call it? 'Heal the scar fruit bowl', I had a fruit bowl and I had everything.

Kiwi fruit's very good, full of vitamin C, so I was eating kiwi fruit like there was no tomorrow to try and heal myself, I did everything I could to make myself get as better as quickly as I could, I did the physio what they said, if they told me to get out of bed so many times a day I did it, so I made sure I was, basically because I hate hospitals I just wanted to get out of that hospital, so I did everything that they told me to do. I even tried to get me stitches out two days earlier than I should have done, because I wanted to go home, stupid but that was me.

I mean I've got a friend that goes out and has had a shoulder replaced and goes out there with her shoulder showing, whereas I'd be, I'm probably a bit 'oh I'm not showing my scar off' but that's me I think, but if it doesn't bother you, I think as you get older it doesn't bother you as much, because I can remember being horrified at my joint replacement scars and the doctor saying 'oh, you young ones, never like them do you'.

Whereas the older patients of seventy and eighty couldn't care less could they, I remember him saying that to me 'oh these young ones never like their joint scars'. I mean I cried when I saw me, my scars when I woke up, I thought 'oh my God' when they took the bandages off and I did I cried. 'Oh, disfigured, horrible' you know, but it did heal up and I kept thinking, do you want that scar or do you want to not be able to move and I thought well have to have the scar really. And you know what I mean that was my choice, but you know you have to talk yourself through these things.

 

Has used silicone gel on her scars to reduce the redness and swelling.

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Has used silicone gel on her scars to reduce the redness and swelling.

Age at interview: 37
Sex: Female
Age at diagnosis: 19
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I did use treatment as well, I don't know this might be beneficial to people. After my second hip there was a treatment that I'd read about and they've, and they've become more popular now and there's different makes of them. But it's a silicone gel that you wear on your scar and it reduces the redness and the swelling and I got that, and I had to buy it last time because it wasn't available on prescription and now it's available on prescription, so I've got that for my knees, but you've got to wear it for eight weeks, and with the knees being sort of different and moving more, I haven't got round to wearing it, because I know it'll show through my trousers and I know it'll more difficult to keep on.

Where like on your hip it's just easier to do. But that was, it, the, the four, no the five year-old scar looks better than the fourteen year old scar because I used that treatment. So I will use it for my knees, but you can use it on scars, it says that are up to 20 years old, as long as there's redness in them you can use it. So I will be using that as well on my knees because the bottom of the scar is not as prominent as the top. So I may get away with it, but it's things like short skirts, knee length skirts I couldn't wear those. Not that I wore a lot of them but that sort of option's really gone, and I do tend to wear trousers more anyway.

General complications
Since some Disease Modifying Anti-Rheumatic Drugs can reduce people's immunity the risk of infection at surgery is higher so
your rheumatologist may decide to pause your DMARD treatment briefly either side of surgery; for minor operations this may not be necessary and indeed it can be worse if your RA flares around the time of surgery. Four patients on anti-TNF drugs or rituximab drug have had surgery several years before being put on the new biologic treatments. Long-term steroid use reduces bone density, as does lack of weight bearing exercise, which can increase the risk of fracture. One woman found the top of the plaster cast rubbed off the skin, causing an ulcer. Anaemia may make blood transfusions more likely during and after surgery and one woman bled into her thigh muscle (a haematoma) after a bone graft.

Last reviewed August 2016.
Last updated August 2016.

 

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