As drug treatments are continually improving, many young people with arthritis will never need to have surgery. Most young people can effectively manage their condition through their medication and lifestyle. Therefore the decision to have surgery is usually only made after other treatment options have been explored. You should find out as much as you can about the different surgical procedures before weighing up the pros and cons with your doctor.
Reasons for needing surgery
We spoke to some young people with arthritis who had surgery. Some needed surgery on parts of the body affected by arthritis. Others had keyhole surgery (surgery using a small tube with a camera) so doctors could look inside the body and get a better idea of the condition of their joints. Sometimes people needed surgery because taking steroid medication over a long period of time had caused their joints to become weak and crumbly. People also talked about having artificial joints replaced in the future (for example, most modern hip replacements have a 'shelf life' of about 20 years). Some young people talked about eye surgery because of JIA-associated eye disease, such as chronic anterior uveitis.
X-rays were sometimes used to see if an operation was needed. People who saw their x-rays described their bones as looking “jagged”, “worn away”, covered in “little tiny holes” or having pieces “missing” from certain areas. People could compare and contrast old x-rays to new ones and see how their bones had changed over time. Some were shocked when they saw how badly their joints were damaged. Others were surprised to learn that taking steroid tablets could cause bone damage.
Jessica is a college student studying photography. She is white British.
I just, as soon as I tried to get up one time and it I just screamed in pain. So I think that’s when we went to the hospital and got x-rayed and checked out and they saw that the hip bone was, it’s supposed to be round, the ball of course, but it was all jagged.
When it came down to a reason why you had the shoulder surgery, can you explain what that was?
That was again because of the avascular necrosis.
My shoulder bones were crumbling like my hips. It was the ball again. It was all jagged like my hips. As soon as, when I got the pain in my shoulder, I was scared because it felt like my hip pain and as soon as we had an x-ray, we looked at it and me and my mum said, “That looks like what my hips, what my hips did before.” So I’ve had they didn’t want to do a shoulder replacement because it wasn’t at that stage. It was a lot better. So basically, they’ve shaved a little bit of the bone off and put a metal cap on top of the bone. So nothing rubs together and that’s both shoulders.
Has that made a difference?
Yes. It’s my left one, left one, yeah, my left one is so much better than it was. I could I can move. Sometimes I have a little bit of pain but I think that’s just waking up and being stiff. My right shoulder is I think taking a while to heal. I can’t do as much with like the left arm.
So it’s a little bit frustrating but I know it’s going to get there eventually.
Doctors sometimes waited before they operated. Elizabeth’s doctor did not perform surgery on her eye until her arthritis settled down. Jessica’s doctor did not want to replace her hip before her eighteenth birthday. David Y was told he could not have an operation to fix his broken leg because he could get an infection and lose the leg.
Sometimes people decided to wait a while before surgery. Dean was not sure if he wanted his jaw replaced because it would only last four years. This type of surgery is very rare. Dan did not want operations on his fingers and legs to stretch them out because he could still use them. Cat had her hip replacement during Christmas holiday so she did not miss university (see ‘Choosing and refusing treatment’).
Knee, hip and shoulder replacements
People who had hip replacement surgery were very positive and said that it made a big difference. They experienced less pain and had more mobility with the new hip. Jessica had her hip replaced the day after her eighteenth birthday. She said it was “the best birthday present”. When she had the other hip replaced she also needed to have healthy bone taken from one part of her body and put near her hip (bone graft). She was not allowed to bear weight on her leg for six weeks afterwards.
Cat is a full-time medical student. She is white British.
I think it's just the arthritis that caused it, joint erosion but actually having read about avascular necrosis not long after I'd had my hip replacement it did make me think maybe actually it was caused by that because, OK but no-one ever, nobody had ever mentioned that to me before so I presume that it was just caused by, damaged by the disease itself. I was twenty when I had my hip replaced and it was about a year before then. Because I'm in pain every day I actually am not normally the first person to notice when I get pain. So it was actually somebody else at work that pointed out that I was limping and I hadn't even noticed before. But then I realised, oh I think my hip's hurting but I just assumed it was normal arthritis pain and then next time I saw my rheumatologist it was actually, I just mentioned it pretty much as I was leaving. It was a sort of an afterthought like, "Oh by the way my hip's been hurting."
So he did a quick examination and this was before I was a medical student so I didn't realise what he was doing at the time but he was testing the range of movement and he obviously realised that it was very reduced because he sent me for an x-ray straight away. It was obvious that he was worried and he called me later that day and said, "It's not good news." He referred me to a hip specialist and when I saw the hip specialist he told me that before he met me having just seen my x-ray he didn't expect me to be able to walk into that room. He thought I'd be in a wheelchair because the amount of damage that was done to that joint, there was no cartilage left which is the, the kind of cushiony bit between your joint that helps it to move but not only that because it was bone rubbing on bone that my bone had actually started to erode. So obviously that's not, it doesn't go well with a moving joint. When I had the operation I don’t actually remember this, I must have been really drugged up but I was told afterwards that the registrar had come to see me and said that it was one of the worst hips he'd ever seen so …
Yeah I would have liked to have been the worst, I'm quite competitive. One of the worst you know so I had that done when I was twenty which is four years ago now and so far so good.
Has there been improvement in your movement?
In my hip?
Oh completely, it completely transformed my life. I mean by the time, I was told I needed a hip replacement in the April of that year and there's a twelve week waiting list but the date I was given my operation coincided with my first day of uni so I decided not to have it done because I didn't want to miss, I would have had to miss six weeks of Uni which would have included Fresher's Week, all the settling in, everything that's really important about going to uni. I wouldn't have wanted to start when everybody else already knew other and made friends so I decided not to have it done so it got done at Christmas instead and that first term at uni I might as well not have been there because I was sleeping fifteen hours a day, I was in so much pain, I was so drugged up on tramadol which is the painkiller down from morphine so it's the one below.
I was drugged up on that which spaces you out, makes you sick, like it just…I just wasn't myself at all. Couldn't really go out because of the pain, had to use crutches a lot. If I did go out I was just exhausted. I just wasn't myself and then after I came back after Christmas or eight weeks after the operation everyone said I was like a new person because I was back to my old self again but obviously the people at Uni had never seen my old self before then. But I was back to my
Age at interview:
Age at diagnosis:
Kerrie is a self-employed baker. She is white British.
What I was actually diagnosed with was avascular necrosis, which is a condition that is brought on by steroid use. I had been taking steroids and, basically, my hip bone had collapsed and died because of the side effects that steroids actually have on you in terms of stopping the blood supply to your to your joints. So even though it wasn’t necessarily related to the arthritis, it’s all kind of connected in some way, so.
So that that was because of the steroids?
Okay and was there anything else that you’ve had done?
No. That was my first operation as such. I’ve been advised, since then, of having, obviously, tests and things on those bones, that the left hip is probably going to need replacing in the next sort of couple of years, just from looking at, you know, x-rays of it that it’s kind of going the same way as the other one. Which, you know, now I’m comfortable with I know what to expect because I’ve been through one operation, even though it wasn’t very pleasant and recovery was a nightmare, it doesn’t put me off really about surgery because I know how much better I feel with the new hip, as opposed to the way I was feeling before and suffering all the pain, is just unbearable.
Okay and it was the, sorry, I think you’ve confirmed this, but this was a side effect of the drugs…
…you were taking for the arthritis?
And did you know that this was going to be a possible side effect?
Not really. Again, side effects are always there and readily available for you to study and see. I think if I studied all the side effects about all the drugs that I was taking, I probably wouldn’t take anything. You know, it’s scary and there are a lot of things that could go wrong but, at the same time, you know, I put my trust in the doctors and these side effects only are a one in however many chance anyway. So, you know, it’s very unfortunate what happened to me but it couldn’t be helped. You know, the steroids have helped me get through a very difficult period of time and stopped me from being in immense pain. So really I can’t weigh up what’s worse, you know. It’s just again, one of those things that unfortunately, has come as a consequence of dealing with my arthritis.
Surgery to ease or prevent symptoms
Some of the people we spoke to had shoulder surgery. This involved placing a metal cap between the shoulder blade and the shoulder ball which stopped them grinding against each other. Jessica needed some of her shoulder bone shaved before she had the cap put on. She wore an arm sling for six weeks after the operation and she was given exercises to do which she said “definitely helps”. Ruth was in hospital for ten days then had exercises to do at home.
Sometimes pain in a joint can be eased by having the bones fused together. Some of the people we spoke to had bones in their wrists or ankles fused together so that they can no longer move.
Kerrie is a self-employed baker. She is white British.
There is talk of a wrist fusion operation. I’ve been struggling with my left wrist now for quite some months. The only option really there is to have it fused, which would basically, mean limited range of movement for me. So I’m a bit sceptical about having that done until, you know, I absolutely need to but in terms of operation, that’s all that’s really on the horizon I suppose. I think that’s enough to deal with at the moment.
Indeed. And perhaps for the younger viewers, why would.
You need your wrist fused?
Basically, the pain that I’m having in my wrist, the arthritis is quite active in it, do it’s slowly almost wearing down the joint, which moving it is quite painful for me. So twisting, turning, up, down, very painful. When you have your wrist fused it basically means that it stays in one position, so that it it’s not able to move and cause your pain.
So even though you still have the use of your hands and your fingers, you’re not constantly moving your wrist in various, well, as the wrist is supposed to move. It’s fused into position to stop a larger range of movement, which will then cause you pain.
Catherine had knee synovectomies. This involved having some of the tissue in her knees removed so her knees swelled less during a flare up. She was allowed home the day after surgery but she was off work for 4 weeks after each operation. People with inflammatory arthritis (such as JIA) rarely have this type of surgery and nowadays doctors use steroid injections instead.
Catherine is a health care assistant and honorary assistant psychologist. She lives with her partner. She is white British.
It’s basically just like a keyhole surgery. I think they can do it on, on a number of joints but in terms of my knee they put, I think it was four small holes, like four small incisions in my knee and they sort of remove the lining of the tissue round your joint because in arthritis, in an inflamed joint you have like a thicker layer of tissue than a normal joint would have which obviously means you’re going to have more swollen joints and when you’ve got swollen joints it affects your bones as well and can damage them. So it just sort of, removing the tissue means that when you have a flare up, hopefully it will get less swollen and you’ll have, eventually have less damage to your joint. So it was sort of just, I was, I think it’s not like a long operation or anything. Obviously you’re put to sleep and then you’re in for the next day until you have a drain taken out your knee and it’s quite a big palaver but they do tell you that it might not work which it sort of didn’t in my case. It worked, it worked for about half a year and then the, it came back to as swollen as it was before which is a shame but yeah I think the reason it was given as an option was because my, my knees had been flaring up quite a bit over the last sort of, the last few years and they thought that this might sort of help, be a preventative technique.
Good, wonderful. That’s a really good description, thank you for that. I’m just wondering whether or not as a treatment that you can have on other joints or is it mainly a knee kind of thing?
I think, it is, I think you can have, I know you can have it on your hips because that was another option that I’d been talking about recently, possibly having it on the hips but I’m not sure about other joints. I think the knees are the main one they do at the moment and, and your hips.
How long were you off work for?
I was off work for four weeks which was, that was the big issue. I was off work for four weeks with the one knee and then the next year I had the other knee done so it was another four weeks off work.
Were you off on sick leave, did you manage to get that?
Yeah, I was off on sick leave and given a doctor’s note obviously and I couldn’t move about at all really so I was literally just stuck at home for four weeks.
So you’ve literally had, you’ve had both knees done and it’s the other knee, has that worked?
The other knee’s actually a lot better, it’s the right knee that has got back to as bad as it was before so it might, it might have possibly helped on the other knee.
Pain management during surgery
Sometimes people were asleep (anesthetised) during the operation. Ruth was awake during her operation but felt no pain because she had a regional painkiller (epidural) meaning that it numbs one part of your body. She said that “the most horrific thing” was not the operation but the thought of being looked after on a strange ward by nurses she did not know. She was also worried about her period starting when she was being operated on.
And how did feel, like having the epidural and being sort of awake for it?
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. 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 in the first place, you have to curl up in the foetal 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.
Age at interview:
Age at diagnosis:
Not employed. Single lives at home with parents
And I mean it was, I had them both done under epidural and people re-coiled in horror, when I tell them I’m awake during the operation. “Oh you’re so brave”. “You’re so wonderful”. And it’s not bravery, its complete cowardice of being put to sleep and terrified of never waking up. But you know the operation itself was, it sounds bizarre, relatively easy, for want of a better word actually quite interesting.
It’s the being in hospital and the being reliant on, when you’ve been reliant entirely on your mother and father to take care of you for so many years, and they have, they have to turn you over to nurses who, by the end of four operations I knew really well. But at the beginning, they were all strangers to me and they were having to look after me, which was very difficult. It’s back again to going to somewhere strange, going amongst new people, strange environments, that was, that was the most horrific thing. And honestly being honest, going in for my first operation, the thing that worried me the most was that my period was due when I was in there and it just horrified me to think of, you know, them dealing with all the you know.
Keyhole surgery (laparoscopy)
Doctors sometimes conducted keyhole surgery to take a closer look at people’s joints. Keyhole surgery involves a doctor making tiny cuts and putting a camera in the part of the body to get a better look.
Rebecca works in customer services. She is white British.
Yeah it’s, oh I can’t remember what it was, what they call it. So basically they go in to see if there is anything in your knee basically that might be causing a problem. So they were looking for damage to the bone, to the cartilage I think they also did say that they were looking for broken vessels and things like that. So it’s mainly just because I think anyway it’s because they couldn’t pinpoint what it was that was wrong with me, the only other option left was to go in and see if they could find anything. Which they didn’t, which was a bit of a bummer.
Has that healed now or has that aggravated it?
No that’s, it’s healed. I had, oh I can’t remember when I had it done, it was last March I think, it was about a year ago, something like that I had it and it’s fine now and in a way it was, even though they didn’t find anything and I don’t know I wasn’t really happy with the surgeon as well, he really annoyed me. ‘Cos I’d just come round from being under and as high as a kite on morphine and whatever else they’d given me, and he came around and I’d literally just woken up, bearing in mind a minute ago I’d been talking about the fact that I’d dreamt I was in the Fanta advert, it was really odd but he came around and then said, he sort of was like, “I’m very sorry but we didn’t find anything and we don’t think it’ll have fixed it and your knee will just go back to the state it was.” And just walked off.
And of course me in that state that I’d just had surgery, sort of in some cases they’d sort of said, “Oh if you know they might find it and they might fix it whilst they’re there.” So of course I’d gone into surgery, like, “Come on, this could be it, this could be it” sort of thing. Like not getting my hopes up really high but I still had hope that it was gonna do something, and then he just came round and was like, “No nothing, you know, it’ll just go back to the state it was in,” sort of thing, all of this, go back to your specialist. And just walked off. Especially as I was still drugged from the anaesthetic and things like that. And that was another point where I just cracked, it was like, just started crying ‘cos I don’t know. Again it was like you were a number, you were just surgery that they’d done nothing, it was like in and out, that was it.
But yeah it was, oh as far as I know they did the surgery to try and find what was wrong, didn’t, and then it was only after that that I started to have physio. And that really helped ‘cos I, instead of limping they taught me to walk again sort of thing like properly on it, which has helped a lot because I had, do now have slightly more movement in it, from trying to keep my leg bending and walking properly, as I did when I was trying not to use my leg at all. But the physio stopped and the scars and stuff are basically non-existent now, so they’ve, yeah it’s healed fine. It’s just that it didn’t do anything. It’s still the way it was.
When surgery doesn't help
Not everyone who had an operation said they benefited in the long run. Dan said his doctor cut his tendons and stretched his muscles to make his hip flexible. This helped for a short while but then his hip got worse. Melissa had hip problems too. She had the muscle in her hip cut (soft tissue release) but this did not make her more flexible. She was in hospital for eight weeks after the operation. Ruth’s bones were so soft that her doctor broke her leg when replacing her hip. She needed to have the broken bone pinned together during the operation.
Due to major advancements in arthritis treatment over the last 10 years it’s very rare for young people to need all of these operations. You can read more about different types of surgery at Arthritis Research UK. Please keep in mind that the information is written for adults. Young people rarely require surgery nowadays because of improved treatments.