Tina
Tina saw a consultant privately who recommended a partial knee replacement for her left knee, and she was then transferred to the NHS waiting list. Tina had concerns about knee surgery based on a bad experience she had of mitral valve surgery and recovery. After hearing about a hospital with a shorter waiting list, she changed her referral and received an appointment “amazingly quick”. However, this hospital was not able to accept her due to her heart history and she was transferred back to the waiting list for the original hospital. Tina has now had a total right knee replacement surgery, though the results have left her “a bit disappointed”. She is waiting to have the same operation on her left knee.
Tina is a retired civil servant. She is married and lives with her husband in a retirement development. They have two adult sons and a grandson. She describes her ethnicity as White British.
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Tina has had ongoing problems with her left knee. Her right knee is also “troublesome”. She tries to stay active and enjoys walking but her knees have been painful with a “giving out” feeling. Although Tina was not on the ‘shielded’ list, she and her husband were very concerned about the risk of Covid-19 to her. As a result, she felt she lost some confidence going places or doing activities outside of the home on her own, which added to the impacts of her knee problems. Tina relied on her husband for stability with her knee problems: “I use him as my walking stick”.
In 2016, Tina had a mitral valve operation which was only partially successful and “left me in a pickle”: “everything changed for me after that. I just felt like an old person”. Then, in 2017, she had a transient ischemic attack (TIA) which further prolonged her recovery. In addition, Tina has an underactive thyroid, allergies and perennial rhinitis, blepharitis (an eyelid condition), and was diagnosed with coeliac disease in her 40s. She had an operation for glaucoma in her right eye which left her with “a droopy eyelid and a grittier eye” as well as reduced vision. Tina took paracetamol to relieve her painful knees; she was also prescribed stronger pain medication but one of the side-effects was related to eyes so she decided not to take it before her glaucoma operation. Afterwards, she decided to stick with only paracetamol to avoid the other painkillers side-effects which can “upset your system”.
Tina previously had steroid injections in her knees, and then her GP put in a referral to a knee specialist. Expecting a delay, Tina used private medical insurance for two consultations about her knees. She was then transferred to an NHS waiting list with the same consultant who recommended a partial knee replacement but said it might change to a total replacement “depending on what state it’s at by the time my turn comes round on the [surgery] list”. Tina would have liked a better sense of the waiting time on the NHS because “if it’s still going into two years then we might change our mind about [private surgery]”. She had been attending physiotherapy over video call and using a knee brace to try to reduce her discomfort. Looking back, Tina feels that she has wanted to go ahead with surgery for several years, though she wouldn’t have known the exact procedure at the beginning. She felt that she “sort of knew what the inevitable would be” as her X-rays showed her knee cartilage “gradually diminishing” over time.
Whilst waiting for an appointment to see a surgeon at her original hospital, Tina heard through a friend about another hospital with a shorter waiting list. This was a private hospital with an arrangement for some NHS patients to receive treatment there. She moved her referral over and received an “amazingly quick” appointment date for the new hospital. She attended a “whirlwind appointment” of x-ray scans and blood tests, and met with the consultant. Tina was told that she would now need a total knee replacement because of the worsening condition of her left knee. Tina and the consultant discussed the risks associated with her mitral valve issues, as well as the damage to her other knee. She was pleased with the amount of information received, and left feeling she “knew a lot of what I needed to know”. She expected the surgery would happen in the next few months.
Separately, Tina saw a doctor about her heart as she was feeling dizzy and fatigued from her ongoing mitral valve issues. The doctor advised that she have a cardiac MRI or transoesophageal echocardiogram. Tina was concerned that this would delay her knee surgery, as she has had issues with waiting for an echocardiogram in the past. She felt “back in limbo a bit” about knee surgery, whereas before it had been “all speed ahead”. She expected that her heart problems would be the biggest concern in terms of the surgical risks for knee replacement. In addition, she worried about surgery due to some bad experiences of side-effects and complications after other operations: “I don’t seem to come through things easily”.
In the months before her surgery, Tina had been feeling low and run down. She had an ear infection and developed a stye in her eye which, in turn, caused her some worry because the hospital had told her to try and stay as healthy as she could to avoid delays to the surgery. She didn’t have any more steroid injections into her knees because she had been told there needed to be a few months gap before the surgery and “wouldn’t have wanted to endanger the timescale”. Although Tina was worried about the idea of knee surgery, she felt that “it would be great if I can have it, get over it, and be more mobile”.
Tina’s original surgery was cancelled because the results of her MRI and echocardiogram meant that she was required to have the operation in a hospital with an Intensive Care Unit and a High Dependency Unit. After being transferred back to the original hospital’s waiting list, Tina’s surgery appointment was eventually booked in at short notice, leaving her in a “bit of a rush” to have her scans and another pre-operation assessment. Tina was given nutritional drinks and special shower and hair products to prepare her for the surgery.
Tina had the surgery on her right knee, which turned out to be considered a ‘complex’ total knee replacement. She tried to do exercises right after the surgery while the anaesthetic was still working, which she thinks in hindsight might have been over-doing it. She wonders if this contributed to what has been a “really slow recovery”. Tina was discharged the day after, which she felt was a bit rushed, particularly as it was handled by a nurse rather than a physiotherapist or doctor. The hospital staffing felt a “bit thin on the ground”, which she thinks was related to staffing shortages.
Tina was prescribed oxycodone for pain relief, which had previously made her feel faint and pass out. Upon request, she was prescribed tramadol instead. This medication worked better for her, but made for an “absolute nightmare” as her husband had to repeatedly get prescription notes and collect the medication because it is a controlled drug. She had some issues with her wound oozing, though this did not lead to infection.
In the six months that have passed since her surgery, Tina has continued to experience some pain and swelling in her left leg, including down to her ankle. She has been to physiotherapy as well as a health and strength class to help improve her mobility. Her scar healed well, with the exception of a small spot where the stitches seem not to have fully dissolved. Tina struggles with some other health conditions including cataracts and Bowen’s disease. Travelling to attend doctors’ appointments that are long or far away can be hard on her joints, and this also makes it difficult to keep up her walking routine.
The outcome of the joint replacement surgery on her left knee has left Tina feeling “a bit disappointed”. She felt frustrated that she had closely followed the post-surgery guidance but still has not had a very good outcome. Having knee surgery has helped Tina gain back some independence though, as she is now occasionally able to walk places without her husband’s assistance. The outcome of her left knee replacement has caused some “apprehension” about having her right knee done, but she hopes that it will eventually mean her knees will “help each other” in the future once recovered. She expects that a total replacement will be needed again for her right knee. Tina advises others to pay for surgery if they can afford it, to consider steroid injections, and to “be a nuisance” to make sure that they get the care they need.
Tina learnt about a knee support from an arthritis magazine which she was then able to ask her healthcare team about.
Tina learnt about a knee support from an arthritis magazine which she was then able to ask her healthcare team about.
I’ve seen an article in an arthritis magazine for something that’s supposed to be really, really good and can be prescribed.
But that’s been a bit of a saga. And the surgery has said that they can’t prescribe it. They’ve sent me to the [town] physio. And they said, no, they can’t prescribe it, go to [hospital]. So, I have now been to [hospital] and they are ordering me this- not, not specifically the one I saw in the arthritis magazine but their version of it.
And I’m just hoping that it’s a bit more beneficial than the one I had from the physio at [hospital]. That is not in any way to run down what was done for me then because, you know, I do know of others who’ve had very similar knee supports provided. It’s just that, for me, it seemed to have very little effect, well, no effect on the pain. Very little effect on that giving out sort of feeling.
I’m hoping, when I get the call about this, this other one that it might be a bit more useful as the injection wears off more and more. And I’m hoping this other one might be far more useful. Apparently, they set it with an Allen key and it-, where my bone-on-bone thing is in the inner side of my knee, apparently it kind of helps to open up that gap which sounds fascinating.
Oh, okay. That’s really interesting.
I know [laughs] I hope it’s not painful.
And you said that you learned about that through an arthritis magazine.
I did, yes. Arthritis Digest, it’s called.
A steroid injection helped to manage Tina’s pain effectively while waiting for a glaucoma operation.
A steroid injection helped to manage Tina’s pain effectively while waiting for a glaucoma operation.
It’s so unpredictable. In the morning, before the walk, I was taking painkillers before I went all the time. But I did recently have the injection, the steroid injection.
It hasn’t been quite as pain relieving as when I had it about two years or so ago. But it has made a considerable difference, though I haven’t had to take-, I only take paracetamol. I have been prescribed something stronger, but I delayed it because of the glaucoma operation because there are side effects, as there are with most tablets.
And one of them was to do with eyes. So, I thought well, I’d be a bit stupid to start something that gave problems with your eyes when I was just about to have [laugh] an eye operation.
So, I left it and, so far, haven’t had to resort to the stronger ones. And at the moment, I’m only taking the paracetamol in the morning before we go because okay, it’s not very long since I had the injection but you can tell it’s sort of beginning to wear off, it doesn’t actually last all that long.
Tina used her health insurance to see a physiotherapist privately after being told it would be a long wait for NHS physiotherapy.
Tina used her health insurance to see a physiotherapist privately after being told it would be a long wait for NHS physiotherapy.
Well, that’s where it got a little bit complicated because again, my doctor had referred me to [town] physio.
And I had a similar letter to the one I’d had from [hospital] Orthopaedic Department which more or less read to me as if we won’t be able to see you for some- how long is a piece of string - kind of thing.
So, I did, having had all that contact that I’ve mentioned with [private healthcare organisation], you know, until relatively recently we haven’t really used over however many years we’ve been members. I had noticed that physiotherapy was one of the things that they had in their magazine and sort of advertised.
And I contacted them and yes, you know, straight away, off we went.
After a long wait for a referral to her local hospital, Tina decided to ask for another hospital.
After a long wait for a referral to her local hospital, Tina decided to ask for another hospital.
The referral was made to that original hospital. And that is a very interesting thing because for quite a long time now, years and years, there’s been all this talk about choice, hasn’t there?
But none of that cropped up.
And really it was only a lot later with conversations with a friend that, you know, the idea of the new hospital came into our decision making.
Alongside possibly paying or going through our insurance where you still had to pay, but all of those things we were, you know, looking at because my knee was just getting worse and worse all the time.
At Tina’s referral appointment she had several X-rays of her knees. She was advised both knees needed replacing and to choose which one to have done first.
At Tina’s referral appointment she had several X-rays of her knees. She was advised both knees needed replacing and to choose which one to have done first.
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.
Tina’s knee surgery took place at a hospital with an intensive care unit because of the slight increased risks of her mitral valve condition and her age.
Tina’s knee surgery took place at a hospital with an intensive care unit because of the slight increased risks of her mitral valve condition and her age.
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.
Tina feels anxious about having knee replacement surgery because her previous experience of operations are that “things don’t quite seem to go as they’re meant to go.”
Tina feels anxious about having knee replacement surgery because her previous experience of operations are that “things don’t quite seem to go as they’re meant to go.”
I don’t seem to come through things easily as you’ve probably gathered, you know, with even the cataract starting it all off. And that’s, you know, what they consider to be probably the simplest operation going these days.
Then the mitral valve left me in a complete and utter mess and, not only that, but was only partially successful. And then I’m not that happy with how my eye looks and feels from the glaucoma operation.
So, and there’s smaller things as well. I don’t seem to-, things don’t quite seem to go as they’re meant to go. So yes, I do have some anxiety about that.
And obviously, the longer everything goes on, I’m getting older and older, which is, you know, [the surgeon] was very clear about everything, both the things I’m taking, the age and all that kind of thing.
He has to, like they do, tell you all the downsides before anything. Yeah, so it’s not- [laughs] it’s not something I would look forward to except in the sense that it would be great if I can have it, get over it and be more mobile.
When Tina felt apprehensive about her knee replacement operation, she talked to her friend who had knee replacement surgery herself.
When Tina felt apprehensive about her knee replacement operation, she talked to her friend who had knee replacement surgery herself.
Because it’s been over quite an extended period, and because I talk to my friend here regularly, you know we do talk about it and things like that, and obviously you are a bit apprehensive about things.
For instance she mentioned the-, you have an injection in your spine, and you know immediately your stomach kind of does a little roll, but on the other hand you know it’s what happens. It’s what you’ve signed up for and what you want. So, you just have to be sensible about it.
To be honest, I’ve been more - I’ll use the word fed up - about the time scale of everything including when I wasn’t able to have the injection in the knee for example, than worrying about the actual happening, the actual operation and all that.
Tina met the consultant and had pre-admission tests and X-rays in one day, and returned to see the anaesthetist on another day.
Tina met the consultant and had pre-admission tests and X-rays in one day, and returned to see the anaesthetist on another day.
I’ve got a friend who lives here at [retirement development] and she has had hip operations done at, oh, I won’t mention the name of the hospital, at another hospital a little further away but with a much shorter waiting list than the one that I was on the list for.
So I got in touch with them and, you know, did the necessary things like getting a copy of the original referral and all that, of that kind of thing for them. And I had a very, what I call a whirlwind appointment there where a lot of things were done all in one day - like I saw the consultant, then he sent me for a whole lot of X-rays.
Went back to see him for a second time, and then after talking and deciding that, yes it was appropriate for me to go on their list, so to speak, then I also had a - I don’t know whether to call it, well I’ll call it a, like a separate appointment - with two nurses, who did just about everything you can think of, like ECG, all the basic things like height and weight and so on, blood tests, well everything really that you can think of that would take place for a pre-admission appointment.
So, you know it was quite a, quite a full day. And beforehand you’re given a whole lot of forms and things to fill in and they hadn’t had time to get them to me in the post, so in between all these different going here, going there and everywhere I was trying to fill in the forms as they moved me from like one area to another to another. I had to pick up everything like coat, scarf, gloves, and all these papers and the clipboard thing to try and move on and go on with it somewhere else. So, it was quite a whirlwind - I would, that’s how I describe it.
However, you know anywhere else I feel, or some other places that might have been up to four appointments. So, you know, two times, the twice seeing the consultant, the X-rays, and then the pre-admission appointment, that could all have been separate appointments. So, you know I think it was very good.
The only thing that didn’t happen on the day, unfortunately - and I don’t know whether it was an oversight or what - was seeing the anaesthetist. So, we did have to go up again for another day to see her. That was all fine.
But you know it was a shame because that was like not a very long or detailed appointment and you know, it probably could’ve or should’ve been included in that first day. Especially you know going quite a distance and coming back. So that’s the only sort of downside of, so far.
When further investigation was needed for a heart problem, Tina decided to use her private health insurance to have an echocardiogram so her knee surgery would not be delayed further.
When further investigation was needed for a heart problem, Tina decided to use her private health insurance to have an echocardiogram so her knee surgery would not be delayed further.
Anyway, in the meantime I hadn’t been feeling great, and I had been to the doctor about several things, and it had been decided after me having - or rather after the doctor using the stethoscope and so on - my area where I had the mitral valve repair in 2016 - it was decided that I should have an echocardiogram.
Now, you could say that was unfortunate, because what it meant was that the hospital, - the new hospital - then wanted to wait for that to happen. And of course that gradually was moving towards the Christmas period.
Trying to get some idea of how long that was going to be for an NHS appointment for that, and then when it seemed it was going to be almost as long as the time I’d been on for my knee - which by now was a year.
So I went through my insurance and got an appointment through [private hospital]. That sounds alright, except as I say it was coming up to the Christmas and New Year period so you know nothing happened terribly quickly.
But I have now had it, the result of that has gone off to the new hospital, I have spoken to them and checked that it was sent direct to them by email - as I had asked.
And the young woman I spoke to said yes, she went straight into her email and there it was and she said, “I’ll print it off straightaway and I’ll take it straight down to the anaesthetist.”
So that’s where I am now. I don’t know what they’re thinking about the result, and therefore you know whether they’re going ahead with the admission.
Tina found physiotherapy exercises easy to do in bed while still benefiting from the effects of the anaesthetic but the next morning she couldn’t lift her leg off the bed.
Tina found physiotherapy exercises easy to do in bed while still benefiting from the effects of the anaesthetic but the next morning she couldn’t lift her leg off the bed.
Well, I wonder if I actually felt too good, ‘cos it was a weekend when I went in, it was a bit thin on the ground with physio care or any doctor coming to the ward.
The physio, two young women came to the ward, they were physios, and they just sort of said, “Are you able to do anything blah, blah, blah?”
So, I did some of the exercises that I’d read about in, in the booklets that I’d had from both the hospital where I couldn’t have the operation and then the one where I could, so I’d been doing the pre-ones, and then I was doing the after-ones, which to be fair there’s not a great deal of difference when you’re bed bound, cos at this time I’m in bed. So, you know it’s lifting the knees, the feet off the bed and that sort of thing. And you know it just all felt so easy.
And I do kind of wonder if I did too much because, you know, since then it has been a really slow recovery, and since then I’ve seen the physio lots and lots and lots, and she’s sort of prepared me more for the coming one, not to really go crazy cos she said, “You’ve got to remember you’ve still got all that stuff in you that they’ve pumped in. So that’s why you can’t feel anything.”
Yes, so whether I did do too much or whether all of what’s happened would have happened anyway, I will never know. But by the next morning, cos I was early morning going to the operation, so this would have been in the afternoon of the first day, so in the morning I couldn’t lift that leg off the bed, it was just like so, you know as if it was a ton weight
I just couldn’t lift it at all. And well we’ve had a slow job ever since then really.
Tina’s knee only hurts if her knee is bent backwards. When walking it is her other knee that hurts more.
Tina’s knee only hurts if her knee is bent backwards. When walking it is her other knee that hurts more.
To be fair because of the other knee, I had to go on taking the paracetamol. I don’t take them like every four hours now, but certainly before the walk I take them, and before the exercises that I’m supposed to do. I usually take them because otherwise it’s still painful trying to put my left knee backwards - it - pull it back, you know when you sit down and you pull your foot back?
That inhibits you if it hurts too much, it inhibits you as to how far you can make it go back.
It’s a mixture really. Not so much pain now from the left one, the operated one, except if I should step down a steepish step which leaves your foot behind you, and therefore the knee quite, quite bent then that’s the biggest pain with that one.
But general walking the actual pain side is definitely now more the right one.
Tina still has some swelling above her knee and her ankle swells up if she sits for any length of time. She has been told by orthopaedic team it can take a year for the swelling to go.
Tina still has some swelling above her knee and her ankle swells up if she sits for any length of time. She has been told by orthopaedic team it can take a year for the swelling to go.
Well, I tried to do whatever I could from the exercises I knew you were supposed to try and do. And it wasn’t quite such a ton weight as, you know, the days progressed. But it was swollen, obviously swollen and the ankle, right down to the ankle and all the way up.
And in fact I haven’t got rid of that particular problem, it’s still got some swelling above the knee and the ankle swells up, if I am sitting for any amount of time with my legs down, like in a car journey or anything.
But what happens is there’s this terrific tightening up that happens. Now that had dropped back quite a lot, but just in the last couple of days it’s been doing it just above the knee now more than before, it was like a metal band below and above the knee. Now this has come up more like, more like it’s swollen, and with just one small lumpy area below the knee.
So, I have been just, you know, trying to do the massage as hard as I can myself, rather than, cos obviously it’s pretty horrible to do it to somebody else, when they’re obviously in a lot of pain with it.
So yeah, in fact you could say to a degree it is still going on.
But also, when I have had the appointment at orthopaedics in the main hospital, you know they do make quite light of it and say, “Well inside there you’ve got this, that and the other, and it’s no wonder really, and it can be a year or more, longer, not just a year or more, but a year or more longer from now before all of that will be gone.”
Tina felt disappointed with the progress of her recovery following total knee replacement surgery.
Tina felt disappointed with the progress of her recovery following total knee replacement surgery.
And then what I did have was actually on my discharge paper called “Complex total knee replacement.” And it’s taken me almost till now to find out why it was classed as total. And apparently the answer is that it was so badly affected by the arthritis that you know it was quite a job for them, if you know what I mean. It was, it was complex because of all the damage that the arthritis had done.
I’m a little bit disappointed. It, you know, I can’t say in myself because I feel I’ve done everything I’ve been told to do, if you see what I mean.
But my friend, a friend of mine has had hers done I think it was January, yes it was January, and you know she’s, I can’t tell you exactly, I probably could if I struggled, but you know so many weeks on she was doing this and doing that, and stopping the pain relief entirely, and back driving and you know and so on.
So you know I do feel a bit disappointed, but I do also know that it’s different for everybody. I’m older than her, for a start. Mine was in such a ghastly state because it had been so long before it actually got operated on, there’s this thing about it being a complex total, you know, all that stuff.
So, you know I’m not, I’m not upset, just a bit disappointed that it hasn’t moved on a bit more.
Tina usually has written questions to ask at her consultant appointment and having her husband in the appointment helped to ask follow up questions.
Tina usually has written questions to ask at her consultant appointment and having her husband in the appointment helped to ask follow up questions.
Well, what I usually do is I write things, I put them down on a computer sheet. So we had an A4 sheet of questions that we went with.
We made sure this time [husband] actually came in with me because we’d made a mistake at the six-week appointment, in that I thought I was just going into like, you see a nurse sometimes before you see the consultant.
So, I thought it was just for like blood pressure or you know all those things, height weight, blood pressure, blood test, all those things. Anyway it turned out I was actually in for the consultants’ appointment.
So yeah, [husband] came in this time and he’s very good at, like if there’s one question asked, he can see what might be a follow up, if there’s an answer, but it doesn’t give you the whole story, he can pick up on the follow up.
So that’s always reassuring having him in there as well as my prepared sheet of questions. And yes, quite a lot did get answered then. And that was where I finally got the answer to the complex total knee replacement. What that actually meant, the complex.
And some reassurance about the amount of bend and, you know, this thing about everybody is different, and it can be quite a long time before you know it’s where you want it to be, and all of that kind of thing.