Making decisions about knee replacement as an older person with multiple conditions

On the 4^th of February, I think it was, I had a consultation with the professor and he agreed that it definitely needed doing, and he said he would do it as soon as possible. I asked him to define ‘as soon as possible,’ and he said within a couple of months, and it wasn’t much more than that at all.

He also asked me if I was willing to take part in a trial for robotic surgery, which I also agreed to, so I've been part of that trial as well.

It lasted I suppose about 25 minutes, something like that.

He’s a man I know quite well because he’s done both of my hips in the past, so he has all my records. He discussed obviously the pros and cons of having a knee replacement operation, the potential side effects and dangers, because it is more difficult than the hip surgery. He discussed the potential recovery period, what I might expect at the end of it.

So now we're talking about the process that's happening in secondary care. So, at the hospital where you're meeting a consultant who's a knee or hip specialist as an example. So if you're coming to see me, I'm a knee specialist. In this sort of situation, you've had severe arthritis which is starting to really impinge on your life. Typically, with pain, stiffness. And when you come to secondary care, there's a discussion about what other options are there available to treat your osteoarthritis. And there's no doubt that that really what's coming into play is surgery as an option. But it does still need to be seen in the context of it is one option and continued non-operative management is still really important in how you manage this. And some people may still choose to not have an operation when they've considered the risks and benefits.

So we know a good way of thinking about this is we talk about a shared decision-making process. So this is the consultant or specialist working with the patient. And I think it's always good if other relatives or people, someone's partner, is involved in the process where you discuss what would be the benefits of having a knee replacement and what are the risks. And that balance, once you're informed of those risks and the proposed benefits, the patient can try to take a moment, get the context of their own life and make a decision about whether they want to think about having a knee replacement or not.

And to kind of summarise that you would say that the reason why you would have a knee replacement would be to try and improve your quality of life by focusing on a reduction in pain and improved mobility, and that improved mobility returns you to things you like doing and your quality of life improves. And for many people, they feel brighter in themselves and they can return to a healthier lifestyle because they're active again. Now there are-, that's the positive.

Then there are the things you need to consider, so the risks. And I would categorise the risks in three ways.

The first risk is the risk that the operation doesn't achieve the things that you want it to achieve, so that your pain and your mobility don't improve in the way you would like them to. And, say, a knee replacement, somewhere around 15% of patients will have some degree of problem after the operation where they won't have all of the improvement they want and they may have ongoing problems. And for a small percentage of people, they may regret having had the operation. However, the vast majority of patients will find that they get this large improvement in their pain and stiffness, and they're very happy with the outcome - but they need to understand the risk that not everybody finds that their operation turns out like that. So there's the risk of not achieving what everybody's set out to achieve.

Secondly, there are medical complications. Now, we've already discussed blood clot and bleeding, and I would add in infection as a really big issue that you need to understand. Because if you get an infection into a knee replacement, it's a really big issue and you're going to need further surgery and it's not something that anybody wants. But we protect you from infection and we protect you from blood clot and bleeding, and what this does is reduce the risks to what we what we think is an acceptable level. And we talk about risks which they are occurring in less than 1 in 100 patients. Actually, a serious blood clot will occur in around 1 in 1000 patients. And some of the infection occurs perhaps in 1 or 200 patients. So these risks, you need to understand them, you need to understand the consequences of them, and you factor them into the shared decision-making process. In addition, there are other medical complications. So a small, heart attack or a problem with the blood supply to your heart, or small or mini stroke can occur. Now these things are critical medical problems that affect people who have knee replacement that, again, they don't happen very often, around 1 or 200. But you need to understand that risk and balance it against the problems you're having with the knee osteoarthritis.

The final risk to consider is the risk that over time further surgery is required to manage the joint replacement if it starts to perform poorly. So that can happen in the early stages after the operation; if there's a problem with instability, we've already mentioned infection. And it can happen in the later stages if the components of the knee replacement start to wear out. So it's important to understand that a knee replacement as a-, for some people, has a life which won't sort of go on forever. And we talk about revision surgery or the sense that you have to have the operation redone. And that happens, we talk about 1% of, knee replacements having to be revised per year. And a rough rule of thumb is by 10 years after the operation, 10% have been revised but 90% is still functioning well. And by 20 years after the operation, 20% have been revised and 80% are still functioning very well. So that gives you this context of how long the thing will last. It's important because if you're a younger patient then your risk of having to have further surgery is somewhat higher. So joint replacement, say, under the age of 55 leads to a higher revision rate. And that's something you really need to critically think about in the shared decision-making process.

So trying to bring that all together, you think about the benefits which are reduction in pain, improves mobility, increased quality of life; the risk that you don't achieve that; the risk that there could be medical problems, infection, blood clot, mini stroke; and the risk that you might need another operation as time goes by.

And so, when I saw-  as soon as I sat down - he looked at my knee and he said, “Oh, yeah,” looked at the X-rays and straightaway he said, “Yeah, it looks like you’ll have to half a knee.”

Said- no, I mean there [was] no, ‘we’ll try this, we’ll try that,’ it was just- 

And he just asked me "where do I live, do I live on my own?" Blah-blah-blah. I said, “Yeah, I live on my own, but my daughter-”  So if it comes to it, they’ll come and stay the night so I didn’t have to stay in hospital.

Now I told you - I said to him, “Well, what’s the waiting list?” And he said, “Well, it was a year, but it’s now down to nine months.”

He told me if- if you have an operation what it involves, you know, you might- this might happen, that might happen, “Do you agree to it?” I said, “Yeah, I agree to it, It's obvious, I don’t want to go- I’ve got no option, I’ve got to have the leg, it’s got to be done, hasn’t it? I can’t carry on the way I’m going."

And he just said, “Okay, we’ll put you on the list and we’ll get in touch.”

And that was now nearly, well, it will be nine months next month, wouldn't it?

I had to go and see the surgeon beforehand, and he took a lot of notes and asked me about my general health, and thought I was okay to go ahead.

I didn’t have to wait very long. I can’t remember really now - I think it was about a month if that I had to wait. And he was very nice.

Well basically he was just checking that I was okay to have the op, and he said the team, actually I’ve just kind of remembered that, he said that there was a team at the time when I was being interviewed, so he sent me for blood tests and heart and something, at that time.

After he’d finished speaking to me he passed me over to some nurses, and I had all the pre-op check out then. I’ve just remembered that and I didn’t see him again. So, that was it until they called me in for my op.

He went through everything, went over pretty much everything that the previous one had done. And you know made me feel really sort of confident, and everything, and yes, I definitely had enough time to ask questions.

And it made me feel even more confident when he then sent me to the x-ray part and they did so many x-rays. Previously locally, I only had you know the, just an x-ray of each knee taken from the front.

While this [one] was taken from just about every angle and, you know, bending the knee and turning this way, turning that way, so there were a whole lot for him to look at when I came back for the second appointment with him.

And at the second one he was sort of saying, “Well you know what this looks like, don’t you already?” And that sort of thing. You know sort of not exactly jokingly, but in a friendly way.

And then he said to me, “Right, so which one do you want done first? The right one?” So, I said, “No, the left.”

I wondered whether there was much talk about what happens after your first knee, has surgery, how far into the future was the discussion, I suppose?

Yes, not really. I mean he obviously, he knew and anyway we were both looking at the X-rays together on his screen. So, we both knew they didn’t look hugely different from one another. And obviously, if he’d been choosing, he would have chosen the right leg, but obviously it’s the left one that’s caused me all of the pain.

I do get some from the other, but it’s not anything in the region of the left one. So he and I both knew that that was something that was coming along before too long.

And I had consultation about the hip, back in the first of December. And then the first meeting I had with anybody about my knee was yesterday. The 7th, 6th of July.

And they looked at the whole of my lower body and they said that really one of the problems is affected by the other, and vice versa. So they try-,  when they put you through these operations they try to straighten you up a bit, so if I have my knee done it will affect how my hip is, and if I have my hip done first it will fix how the knee is - so we've got to balance the two somehow.

He reckoned that they would be probably six months apart, and they would make the decision which one was done first.

Well, I mentioned about the X-ray and they were literally-, I was there about quarter of an hour or 20 minutes early, and they literally picked me up as soon as I came inside the door and sent me straight down to X-ray.

And they X-rayed the whole of my lower body, because of what I mentioned earlier about the hip affecting your knee-, your left hip affecting your right knee, and right knee affecting my left hip. So he really took a picture of the whole thing.

And then I went back and changed, and we sat down then in the interview for about, oh, I don't know? 20 minutes. And he just explained to me about-, I was in, certainly- He said that, you know, the normal warnings about death and strokes and stuff and generally informing me about the procedure, you know what they do?

Because at the moment it’s the inside of my knee that’s causing the problem, same as the other one.

So what they're going to do is put me up for-, when I go under the knife, they will have a half knee to give me, and then with a whole knee on standby if it’s needed. Which is the same as last time. And the-, a half knee is less risks, apparently.

When I spoke to the consultant he said, “It’s not your knee, it’s your hip.”

Anyway they did some X-rays, and they showed me the difference and it was unbelievable: the hip on the one side looked as if it was right up, you know, in my body compared to the hip on the other side so and as soon as they’d done the hip, repaired the hip, the actual knee: there was no problems anymore.

And because my knee’s no problem now.

Oh brilliant.

But it gets a bit sore, both knees do, because I've had that-, and walking awkwardly since I've had the hip-, well, not awkward but differently since I've had my hip so the knees do get a bit sore now. But on the whole, I don't have pain in the knee anymore.

Right, my knee-, the surgeon wasn't going to do anything about it because I was on steroids.

I said, “Well, why’s that?” and he said, “Well, if it starts to bleed,” he says, “it could have not very good consequences, you might even lose your leg, you might get infection in it.”

I says, “Oh dear me, right, okay,” so I says, “we'll just leave that at the moment then.”

And I've got this condition called vasculitis, which is an inflammation of all the blood vessels in my body, and I'm going regularly for treatment at the hospital.

Well, probably the mitral valve, for him, was the biggest one. And the medications and so on that I’d had to take so, yes, I think if I am right, I hope I’m right, I think - ‘cos he wrote the letter very much along the lines of what he’d said at the appointment - said, obviously that the age, the heart experience and other conditions obviously do slightly increase the risk, the normal risk that there is with any operation, some phrase like that.

But the consultant for that then sent me for an MRI scan as well as another echo-cardiogram, and he then wrote a letter saying that it was okay for me to have the operation but it still was the case, it had to be somewhere where there was ICU and an HDU because of I do still have the moderate level of leak from the mitral valve.

I think they always kind of give you-, and I understand the reading, they give you like the worst-case scenario, as you may be worse off than you were before. Some people experience more pain than they did before they had it done. Can’t kneel or can’t, find difficulty walking or something like that, you know.

I know that’s the way it is with pretty well any surgery isn’t it. They give you the worst-case scenario I suppose, just too well cover themselves I suppose. Can’t say, they can’t sort of say, “You’re gonna be skipping out of here like a two-year-old,” can they, and then you find you’re not [laughs].

But like I say, my experience is overall that, you know, we’ve got a good hospital I think for joint replacement.

And I’ve not come across too many people-, well I’ve not come across any that haven’t been pleased with it. But I have just heard some scare stories from one or two which I take with a pinch of salt in the absence of any evidence of that, you know.

Well, no I did ask because I had thrombosis so I was on blood thinners, and they said they could deal with that. And they said you know, when I’d had surgery I’d have to exercise and I said yes, I understood that. And you know, and, and I did those exercises, so yeah.

Can I ask a bit more about the thrombosis, and sort of blood clotting? What sort of conversations or you know explanations were there around that for you?

Well, they said as long as I was on the blood thinners, that was alright. And I’d, I had stents put, I had May-Thurner syndrome, so I’ve actually got stents in my body so they were satisfied that it would all be alright.

It was only about six weeks. I thought it was going to be a lot longer but they were really pleased with the fact I’d been doing yoga and swimming and things, and they were pleased with the muscles around my knee and I think my overall health, they were pleased with it.

So, it wasn’t very long at all. I had said that I’d put off the surgery and I said I’d read that it was going to be up to eighteen - you know there were so many people waiting - and I said I know there’ll be a waiting list. And they said to me it could be eighteen months. And I said, “Well I can’t wait that long, I’ll have to pay to have it done.” But I did hear very quickly with a date, so it was great.

I did say to the sister, I said I was a bit worried about my weight, and she said, “Oh no, you’re, you know a little bit overweight but we’re not worried about that.” Cos my blood pressure’s always, is good, and all my readings were good, so you know it was nice to hear really.

Well, he did tell me that I had a spur on my left knee which is where I’ve got a half-knee replacement  -a spur of bone that was possibly causing some problems. And in actual fact it does cause certain problems if it catches, it doesn't happen all the time, but if it catches it is excruciatingly painful, but then only for a few seconds until it sort of rights itself and, you know, things are back to normal.

I thought maybe they would say that they do a sort of clean out of any bits of debris, but having sort of looked they said, “I think we need the MRI scan,” so they can really see what’s going on in better detail. But they did also say there was a slight possibility that maybe it would be better to do my other hip first.