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Rheumatoid Arthritis

Surgery for rheumatoid arthritis - lower limb

Some of the people we interviewed had lower limb surgery and talk about their experiences here. 

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.

Joint deterioration in the legs decreases walking distance and could be painful. Operations reduced pain and most people could walk well again after they had recovered. Crutches were sometimes a problem because of pain and damage in arthritic arms. Forearm crutches, supporting the weight from the elbow to wrist, are often used rather than shoulder or elbow crutches. Some people used a Zimmer frame for a short while.

A number of women we interviewed had had bilateral hip replacement or one hip replaced. Some of of these women had juvenile chronic arthritis and had had the operations aged between 19 and 36. A couple more women over 50 were awaiting hip replacement at the time of interview. Their symptoms were increased groin/hip pain, loss of sideways movement and limping; one had to use a wheelchair. 

Several of the women had waited years to have the replacement surgery as surgeons had told them that as they were young and the artificial joints had a limited lifespan, they would inevitably need further replacements so it was better to wait. In hindsight, one woman felt that her life had been on hold for many years and her level of mobility had declined. One woman described the recovery from the operation and how she had learnt that people with osteoarthritis recovered faster than those with RA.

 

Waited several years for hip and knee replacements. Waiting led to increasing disability and her...

Waited several years for hip and knee replacements. Waiting led to increasing disability and her...

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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Well it was, I think it was 1993 that my specialist at the, specialist hospital that I, that I used to go to, sent me to, you know they thought that my life was being, 1993 I would have been in my teens, they thought my life was being disrupted too much and that it would be a good thing and that I would benefit from it. I went to a specialist centre for young people with you know, joint problems and they did various tests and I had, I had a, I did have a MRI scan before I went and they looked at that and X-rays and examined and pulled and poked about endlessly and then decided that it's too soon, you'll have it done when you're in you're in your thirties and forties, which they got spectacularly wrong.    

Obviously there is a shelf life with joints, they don't last forever so and probably then I would have been 17 or 18 or something like that, maybe your joints haven't quite finished growing or whatever.

And they think, they thought that with physiotherapy and with exercise, that things could get probably not as better as they would have with joint replacement, but certainly significantly better and it was best to put it off for a few years, which at the time we didn't disagree with and we didn't object to obviously then the thought, 'cos I was rela, well not relatively, I was mobile.

I didn't have much of a life outside of the illness but I was better shape than I am now and so the thought of obviously, the thought of two operations terrified the life out of me in fact I was delighted when they said, 'Oh no, no it will be a few years before you have it done yet'.

But obviously with what came subsequently, you look back now, if I'd had it done then and the knees as well probably, my life would have gotten started again ten years earlier or you know. But hindsight is a wonderful thing [laugh] and might well have been that something else would have gone wrong or you know. You, you can never say but it, obviously I've spent a lot of years in suspended animation almost just sort of waiting for the drugs to work or for this work or for that to work. For physio to work or hydro to work  for anything to start working so I that can start living, if you put it in that way.

 

Was given good advice before her hip replacement that she should not compare her recovery time to...

Was given good advice before her hip replacement that she should not compare her recovery time to...

Age at interview: 40
Sex: Female
Age at diagnosis: 2
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One bit of advice I was given when I went for my joint replacement for my first hip, and it's an advice that I've had in my head, and every time that I was feeling down, I listen to this advice and what it was is that osteoarthritis patients that have joint replacements recover far quicker, they are up and out of bed far quicker than people with rheumatoid because they just perhaps have a couple of joints that are affected, rheumatoid is an all over condition that every joint is affected and you are not as good, and I can remember a friend said to me that had a joint replacement, don't look at the osteo patients jumping out of bed and trotting off down the ward, she said, look at the rheumatoid ones, who won't be as good and she was exactly right. 

The ward was about thirty six beds long, most of them were osteo patients in their eighties and seventies, up and out of bed up and down the ward, struggling, but they were there, and there were perhaps four or five rheumatoids and all of us were on the beds so many days later and struggling getting out of bed, and I remember thinking, 'hang on  they're osteo', because you compare yourself and you think, 'gosh why aren't I as good as them?'. I did more so because I was only twenty six and they were seventy and eighty, and I'm thinking oh my God look at that old lady out of bed, up and down the ward, so I kept thinking 'Hang on they're osteos, they're osteos' so take no notice, the osteos are up and down the ward like the billyho so look at the rheumatoids.

And how long did it take you to sort of beetle down the ward and?

I never really did. For me because I had problems with my other hip as well. So, and I was quite ill before I actually had my joints replaced, I had been bedridden for months on end, so I was very weak as well, so I was perhaps not your norm to have a joint replacement.

And I did find that the nurses tended to, I was in a general orthopaedic ward, which I think that's what happens a lot, and they're there, they just see the one joint, they do actually have rheumatoid wards which I think is a lot better if you can go in one of them because the nurses are trained and know that you are, that you're rheumatoid and that you are not going to be as good, they had, in the ward that I was in, they had, after four days your were up and you had to walk to the bathroom to have a wash, well after, I couldn't, after four days I wasn't well enough to have a wash, it was too long to walk, you had to carry your soap bag, which of course I couldn't carry my soap bag because my  hands were sore, so I was allowed to have, to be washed, a bowl to my bed and I can remember some of the older ladies saying 'why is that young one getting a bowl to the bed and I've got to walk the ward', that sort of think you know. So I can remember that. 

Pain after the operations was significant but, after several days in hospital to make sure they could walk, most people went home to continue their recovery. One woman found it hard to adjust to returning home and being able to walk after being in a wheelchair before the operation.

 

Returning home after her hip operation was challenging and she had to get used to being...

Returning home after her hip operation was challenging and she had to get used to being...

Age at interview: 21
Sex: Female
Age at diagnosis: 12
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I came home on Monday, which was very strange, I felt like I was  like I'd been I don't know, I wouldn't call it prison but it, it's very isolating to be in hospital and not see people and not be out in the street and  because it was in a big city, I came out and people walking everywhere and cars and I felt flustered and panicked and a bit confused. But that's normal I think when you came out of hospital especially if you've had that kind of operation. 

You tend to feel a bit sort of shaky. And so I got into the car and I came home and  had a mince pie [laugh] and but even when I got home I thought I would feel better, but I don't know what I was expecting to feel when I got home. But it wasn't the same because everything I'm used in the home is more like a challenge 'cos when you have you're hip done you can't sit with your knee higher than your hip joint. It has to lower otherwise the angle's all wrong. So that was difficult making sure that all the chairs were high and just the kind of thing that you don't really think about. 

So 'cos I have a high bed and a high chair, at my computer in my room and I stayed in my room for most of the time which again was quite isolating. But it was difficult but it was also I think necessary to sort of heal myself inside, as well because I'd, I'd been used to a different way of life when my hip was bad, used to not walking very hard and not using the bus and having someone with me all the time. And being on my own was quite lonely and, and my boyfriend would come around a lot and see me and that was really nice to spend time with me, and take me out in the wheelchair. But I think it was necessary  to get used to myself a little bit, because I think I was depending on other people too much.

Operations on knees included clean outs and joint replacements. Two people had undergone synovectomy, one also had a radioactive isotope (Yttrium) injected into the knee joint to remove any inflamed synovial tissue and another described a 'wash and brush up' (an arthroscopy). Five women had had both knees replaced; two chose to have these done simultaneously (one said she had underestimated the pain involved), and a sixth person had had one knee replaced. Two chose to have these under spinal block/epidural anaesthetic rather than a general anaesthetic but one said she had not been warned that this could make her incontinent for a few days, which she found difficult.

One 78 year old had had a very early knee replacement in the 1960's - only the third carried out in the UK. It was unsuccessful, leaving her with a bent stiff knee. The later replacement of the other knee lasted 30 years but only gave 15 degrees of bend. More recent knee replacements gave between 60 and 105 degrees of movement, reduced people's pain, although not always completely particularly if they were in flare, and enabled them to stand up straight and walk better. One woman was disappointed because she could no longer go up steps by herself or get up from a dining chair without help and she had a further operation and more physiotherapy to try and improve the movement.

 

Describes the improvement immediately after her knee replacement operation.

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Describes the improvement immediately after her knee replacement operation.

Age at interview: 40
Sex: Female
Age at diagnosis: 2
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But it was just a fear thing really, and it was very very painful the knee was more painful than the hip but the physio afterwards isn't as painful  because I can remember the first time they ask you, they come to your bed and they ask you to bend your knee and I was petrified about bending my knee, thinking 'oh my God it's going to kill', and I bent my knee almost immediately whereas as it took me twenty minutes before to bend my knee, so when he said 'bend your knee' I was thinking, I was waiting for this pain that I used to get and I looked down at my knee and thought 'oooh', and I was like 'Yes!' you know and I was absolutely made up.

Yet a lot of the old ladies down the ward were going 'oooh, ooh' and you know, and they had about 90' bends within a few days and they were going 'oooh the pain' and you're thinking no, so it's your own level of tolerance because my knees were so bad they could have put whatever they wanted in, I mean I remember the first day I stood up after having my knee done, I put my foot to the floor and my knee used to go 'creek', and you could hear it crack and it would take me a couple of seconds, minutes to actually lock my, to make it go straight to stand up.

And they got me on the end of the bed, stood me up and I was waiting for it to 'creek', and I thought 'oooh' and that was it, I said 'hey this is ace' I was like, you know I was like I'd won the pools. And I was told to sit back down again in case I did too much, I was like 'what?!, this is wonderful' you know, but that was my perception of it because of what I'd been through, it might not be,

And how much bend did you have in it?

Not much at all, when I, before I had my knee replaced I had 4' which was like 'creek' blink and you missed it, I've only got, I've only got about 60 or 70' which is not very good for a joint replacement but considering what I had they're happy with it and so, I would like 90 but I wasn't disappointed that I didn't get 90 like a lot of people do, but you know, that's life in'it.

Exercise is important and recovery time was quoted as being 3 weeks with crutches and then two people said they were driving again by 5-6 weeks after. One young woman's femur was broken during her fourth joint replacement, a knee, so she was in plaster for 4 months.

 

Recovered quickly from her bilateral knee replacement surgery by exercising regularly and feels...

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Recovered quickly from her bilateral knee replacement surgery by exercising regularly and feels...

Age at interview: 37
Sex: Female
Age at diagnosis: 19
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Then since the operation the scar did take longer to heal because of the internal stitches. The, the outside scar didn't close over them and some were poking through, so my recovery was probably delayed to a point, but I did stop using crutches, these were cemented in these knees so I didn't have a choice with that, they couldn't do non cemented knees they wouldn't be stable enough, so I had to have cemented knees, so I was able to walk with them straight away. 

The crutches that I used I stopped using after three weeks and I was back driving again at five weeks so my recovery was quite quick, I did everything I was told with my exercises, did them three, four times a day and that, I built up walking, I live in a small close, so it was easy and safe for me to do sort of circuits of the close to get my confidence up walking again and when I'd built my confidence up after a couple of  weeks I ventured out onto a main road, and I just kept that part of my recovery up with sort of walking daily. And once the scars did heal then I started swimming, which brings us up to the present day really.

I've, I've started to build muscle again and again, I've been on a high for probably the last six months because the relief from pain is so great. Prior to the operation I really was scared again about what was happening because it's so final, you lose your knees, you can't put them back, if something goes wrong then its permanent so, you know, there was all that to contend with, but luckily I did have confidence in the surgeon and his reputation was correct because they've been excellent since he did them. 

But what I've found since my knee replacements, so this is only a recent thing is that I do seem to have more energy, because most of my pain has been sort of decreased and I think a lot of the sort of energy sapping part of it is the fact that you know the pain is sapping your energy I think. They do say that sort of tiredness is sort of side effect of rheumatoid arthritis but personally I have found that's no where near as bad since I've had the knee replacements, cos this morning I've just been swimming and normally if I've been swimming I would be sat sort of tired and almost dropping off to sleep, but I don't find that now, I can just carry on with my day as normal. I don't you know it doesn't slow me down or anything, so knee replacements are to be recommended if you really need them.

 

Her fourth joint replacement was complicated by a broken femur, so recovery took much longer.

Her fourth joint replacement was complicated by a broken femur, so recovery took much longer.

Age at interview: 28
Sex: Female
Age at diagnosis: 5
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But no as I say, generally speaking the procedure, the surgery itself has been relatively straight forward and thankfully, and even though, on the last one they broke my leg, you know. The consul, the surgeon says, that long term it should be no more than a hiccup, no more than an annoying little slow down, which it has been. You know, you think when you've gone through three operations and you've come through them, apart from the little bumps in the road and the difficulties, you think, 'Oh you know it's the fourth one now. You're in the home straight, this is gonna be over with and then' and then they, clumsy little buggers, break my leg. 

Yeah. He said three months and I've looked, as I do with everything these days, I've looked it up on the internet, looked at broken legs and broken femurs and it is the, believe it or not, the strongest bone in the body, the femur and when it breaks it does take a long time to heal. It can be up to 6 months. So I've read on there I don't think it was a particularly bad break and but yes three, three months is a long time but I mean it's been longer than that. It'll be, if they take my plaster off next Thursday, if they take it off and he'll only take it off if he's, he won't take any chances, if he's absolutely sure, it'll be 17 weeks, so that's four months.  

But, you know, no if it, and it's really hard, you, you wouldn't really understand how hard it is, 'cos obviously the, the only, the, the golden rule is you can't put weight on it, don't put weight on it, don't. But it's really hard when you, even if you're just transferring from bed to chair not to put your weight down. Your brain, your whole body's geared towards putting the foot down. So you have to be really quick and 'up swivel and down' sort of thing. But yes, its a, I think it's a, a bone that takes a, a long time to heal at the best of times I suppose, when your bones are relatively healthy which mine are not. 

Fusion was the most common ankle operation, but one person had had a bone removed and another had both ankle joints replaced. Ankles that were very painful before were often pain-free after all these operations, but movement was limited to up and down and not sideways or rotation. One man describes his operation and recovery. Two people had chosen to let their ankles fuse naturally rather than surgically.

 

Dislocated her ankle and consequently had pinning and replacement surgery in that and her other...

Dislocated her ankle and consequently had pinning and replacement surgery in that and her other...

Age at interview: 43
Sex: Female
Age at diagnosis: 24
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Then I had an ankle replacement about 12 months ago. Unfortunately my, my ankle became dislocated little to my knowledge, I didn't know that was the case, because probably as many, many of arthritic people will tell you, you're in pain all the time so you just think, 'oh this is just another pain' so I didn't realise I was walking around on a dislocated ankle. And after  an x-ray, it was found that I had a dislocated ankle so they wanted to try and not fuse the leg because that would have given me like a straight leg, so they tried pinning it first. 

So I had, they pinned it and that was in the May and  they straightened it up but it didn't hold, so in the November, I had it replaced, and that was about, oh, just about 18 months ago. And then I've just had my left ankle replaced, because it was so good, the operation was such a success, but unfortunately I, I did have to go private, for the operations on both my ankles,  because of the waiting time to have the first operation done. If I hadn't had the first operation done there was a possibly that I could, my leg would have broken, so and it was an 18 month waiting list at  [name of hospital]  so it was necessary for me to, to go private  for all, both all my ankle replacement therapy basically, all the other bits I had all done on the national health but.

Oh no, I mean, there, I mean, the place I went to they're very quick. You go in on the day you have the operation. So I arrive at 10, and I was ready and in the operating theatre at 12, and I was out of the operating theatre by 2'30 so it's very quick and then that was on a Monday and I was discharged on the Friday. They just, they'll let you go as soon as they know that you can look after yourself at home and they get you up straight away, on the second day after you've had the operation. So no, you're not and also they're very aware of the fact that you have arthritis and being in bed doesn't do you any good if you stiffen up. So no, I wasn't in there long at all. 

And when you came home you've been able to, well get around a bit?

The first two weeks, they, the, I think this is what they say 'cos you're not in hospital long they make you rest, you have to rest so you're in bed really for 2 weeks. So the ankle can heal and take, and that was probably hard because that's when I had to get neighbours to let people in 'cos I couldn't literally get off the seat without somebody taking me off the seat and couldn't go to the bathroom, couldn't do anything. Now that two weeks is over, I am free. I'm allowed to hop  around part of the day and then make sure I have it up the rest of the day.

 

Would have liked the surgeon to tell her how her ankle would feel after the plaster was removed.

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Would have liked the surgeon to tell her how her ankle would feel after the plaster was removed.

Age at interview: 51
Sex: Female
Age at diagnosis: 27
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Only that I think it's a good idea for, for people if they have to go in for an operation to press the surgeon to give them a fairly full picture of how they'll feel not, not just immediately after the operation but in the few weeks following the operation when they're home again. I had a couple of operations where I would have found it useful to have been given more information so that I didn't worry about the way I felt initially. 

I've already mentioned the ankle and the fact that immediately after the operation I could walk really well in a plas, plaster cast but when the cast came off my foot, my whole foot felt very, very different from normal and it was a great struggle to walk initially but it didn't last for that long and I think it would have been a good idea if I'd been warned that it was only a temporary effect and it would actually feel quite normal after a few weeks. 

 

Describes a toe and ankle fusion operation and how the pain is now more like mild toothache than...

Describes a toe and ankle fusion operation and how the pain is now more like mild toothache than...

Age at interview: 55
Sex: Male
Age at diagnosis: 47
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So eventually what was recommended about two years ago, perhaps less than that, a year ago, was that I actually had my left ankle fused and I was able to have this done privately because I, get that as a perk through work, and had that done in September last year, September 2002, and I was in basically just in for a couple of days, to have that done, it was done under general anaesthetic and they also took the opportunity to straighten out a toe that had really, turned into a hammer toe in fact it was totally bent, so they put a steel pin down through that at the same time, and then I was encased in plaster and I was in plaster for five months.

I went back to work after five weeks after the operation, and work actually got me one of these mobility scooters to ride around the data centre on.

So they went for fusion, so I looked that up and I knew everything they were going to do before I had the operation. I mean I'd actually seen pictures and x-rays of people who'd had, had it done, so I knew exactly what was going to happen. I didn't know how I was going to be able to walk when I'd finished with it you know, but it's been a great success really, he's done it really well.

And I realise you're just like out of your rehab, you're still getting, but is it easier to walk on, is it less painful, is it less stiff, is it?

Yes all of those. Yep, it's. It's, it's like having mild toothache all the time in your ankle at the moment, whereas before it was like a raging fever in there you know, almost unbearable pain so it hasn't taken the pain away altogether, I can't I have to be careful that I don't bend it in a funny direction or something like that because that then really hurts. 

So so long as I take it easy and put my shoes on and don't walk too far it's been a big improvement yeah. I stopped having to use a stick about two weeks ago. It suddenly kicked in after the operation, because when I first had the plaster off I didn't feel there was any difference. It still hurt like hell and I couldn't walk, you know, but suddenly it suddenly clicked in and it seems loads better.

Several people had had some form of foot surgery - to remove sections of bone, to straighten hammer toes by fusion or pinning, repair toe joints with plastic inserts and one woman, many years ago, had eight toes removed. Some people were very pleased, achieving better function and less pain. Two women felt foot surgery was a last resort if the pain became unbearable but because the bones in the feet are complex, they felt they might be worse off unless the surgeon was a specialist. One woman had experienced this and described several operations on her feet which still hadn't resolved the problems. Problems with feet sometimes needed special shoes to be made (see 'Other hospital specialists').

 

After several operations on her feet, which she was inadequately informed about, she still has...

After several operations on her feet, which she was inadequately informed about, she still has...

Age at interview: 53
Sex: Female
Age at diagnosis: 30
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Well the first was to remove joints at the base of my toes, on a, and I'd thought it was just to remove the lumps that were making it uncomfortable to walk on. But this was case in point of an arrogant uncommunicative surgeon, who said 'Yes we can sort that out for you', and with hindsight I should have said 'And what precisely are you planning to do Mr Dah-di-dah?' and it was only when I came round from the anaesthetic and the following day sneaked a look at my X-rays that I found he had just removed all the joints, with two cuts right across the base of the toes and right across my feet. 

So all the joints had gone and effectively from having size eight feet I then had size seven feet. And pins sticking down, up  from out of the end of the toes up into the feet and my toes in, at odd angles. That was the most shocking experience. And the next time he came round on the ward I hid under the bed clothes, so I couldn't even face I had, I had no idea what I could say, I was so shocked and angry. Then the next operation was to put some plastic joints in the big toes to try and improve my walking. 

But it was found the year after they were put in that those particular joints didn't work very well. And they didn't work very well, so the operation last October was to remove those plastic joints and I remember going to the pre-admission clinic and asking  the registrar and the SHO who were there about the experience of the consultant surgeon who was going to be operating on my feet having been through surgery twice on my feet, it was dreadful, and I didn't want to be having to go through it again. So I was really keen to make sure that I asked all the questions this time. 

The consultant couldn't be there that day. But the registrar and the SHO were there and I said I wanted to know about his CV, I wanted to know his success rate, I wanted to know where he had got his experience. I needed to be reassured that he knew exactly what he was doing. And I said because I don't want anyone else operating on my feet, and it was only six months after the operation that I discovered he had let the registrar operate on my right foot while he operated on my left foot. And my right foot isn't as good as it ought to be.

So I'm very angry, I'm very angry, I find it very frustrating that patients aren't considered and cared for in a thorough and professional manner. And when the consultant owned up to having let the registrar do my right foot he looked sheepish and he kind of did, he did this kind of gesture. He knew he shouldn't have done it. Because he could see the right foot wasn't as good as the left foot. And that the problem the right foot has left me with has meant that it's aggravating  incorrect walking and is having knock on effects over the rest of my body.

So I'm now getting pains in joints that I didn't have before. My left hip is now stiffening up and very sore and I'm walking with a hobble. The week before I had this last operation last October I took my dog for a walk  in the local woods and I walked on soft going because it's beech woods, I walked a good mile. I haven't taken my dog for a walk since the op. Because I can't do it. So I'm now looking at even more surgery on my feet.

Last reviewed August 2016.

Last updated August 2016.

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