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Noreen - Interview 25

Age at interview: 77
Age at diagnosis: 75
Brief Outline: Diagnosed in 2006 following a compressed T11 fracture in the spine; experienced severe pain. Surgical procedure; Kyphoplasty. Oral medications provoked adverse side effects. Currently on intravenous drug; ibandronate 3 mg once every three months plus calcium tablets.
Background: Widow, two children, lives on her own in a small rural community. She enjoys the support of neighbours and friends. Noreen recommends Kyphoplasty, it has reduced her level of pain.

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Noreen was diagnosed with osteoporosis following a spinal fracture. The GP started her on alendronic acid 35 mg once weekly, but continued to be in considerable pain. Noreen explained that her compressed fracture was healing in wedge shape which was nipping nerve endings. She describes her pain at that time as ‘absolutely awful’. Noreen remembers that she couldn’t do much because of it and used to spend most of her time sitting on an armchair. Her GP referred her to an osteoporosis specialist.
 
At the clinic, Noreen was pleased to find out that the specialist and the osteoporosis nurse understood her pain. The specialist suggested a new procedure called Kyphoplasty and, asked if she would like to be referred to the spine specialist. The specialist osteoporosis nurse explained the procedure to her and Noreen decided to go ahead. She says that the osteoporosis nurse was excellent at explaining the procedure and answering her queries. She has found her overall medical care excellent.
 
Noreen highly recommends Kyphoplasty because whilst, it has not made her pain free it has made an improvement to her quality of life. She had the procedure six months after her fracture and says that ideally it should be done soon after a fracture occurs.
 
Noreen has tried several medications; alendronic, Bonviva and what she describes as ‘a powder’ she took every night (presumably Strontium ranelate). All these medications affected her stomach and gullet and she currently is on an intravenous injection; ibandronate 3mg once every three months.
 
During that period of severe pain Noreen enjoyed the help of friends and neighbours who came round to prepare her some lunch, do her shopping and kept her company. Her next door neighbours continue helping by sending their son to cut her lawn and taking the rubbish bins for her.
 
Apart from osteoporosis, Noreen also has rheumatoid arthritis of the spine and says that she is learning to pace herself to avoid flare-ups. Also she has made changes to her domestic life by having someone to clean her house and do the garden. She has a good circle of friends and continues to enjoy a varied social life but she no longer wants to go on holidays or away from home because of the difficulties in packing and the lifting. Noreen says that she is a happy person who enjoys being at home and being part of a close community. She has lived in the same village for the last thirty years.
 

Noreen’s physiotherapist gave her gentle massage and gentle exercises to do because her back was...

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I couldn’t walk like I used to. I’d seen the physio at the surgery. You know, my GP but the physio is excellent, but she daren’t do much, my back was too fragile, she daren’t do the usual, you know, and gave me some, it wasn’t a TENS machine, but it was something like that, but that just aggravated it, and then, then I went back to the physio actually, after I’d had my operation and I saw Mr [name] [laughs] after six weeks or something like that. He said, “Now, it’s time for some gentle exercise.”
 
So my GP referred me to the physio at the surgery again and she said, “Now then, all I am going to do, is gentle massage and give you some gentle exercises to do at home.” Which I do, I can only, and she said, “You must only do them when you’re almost pain free.” You know, she said, “When you are having a bad spell you must not do them.”
 
So I do gentle exercises, on the chair, and on the bed, each day. But, you know, if I am going through a bad patch then I don’t.
 

Noreen found it difficult to describe the pain she was having. Now she has a rest when she starts...

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Do you remember how you felt? When you were able to describe pain and that people understood exactly what you were referring to?
 
It was a relief, you know, when they knew what kind of pain I was having, because its very difficult, I find it difficult to describe some pains, I mean if it’s a sharp pain, yes, you can say sharp pain or whatever, but I find the pain in my back I don’t just have one pain, it is not just the one thing, its other things that are paining as well. And I find that very difficult. And when she, when they, when she said, “Does it hurt… is it worse when you do this, does it bring it on?” And certainly it does. And then its used to, what it doesn’t do so much now, I used to know when it was starting off and it would get worse and worse and worse and it was like a clamp round my middle, squeezing, squeezing and just absolutely awful. But now I can, I don’t let it get that bad. I try not to let it get that bad. So when I am feeling it coming I think, oh I will just sit down for a minute or two until it goes. Even in the kitchen I’ve got cushions on the back of my chair so that I can sit back and oh have five minutes.
 

Noreen describes her positive experiences of her first appointment with her consultant and nurse...

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And how often do you go and see the consultant at the hospital?
 
Well I haven’t got another appointment for him, but I could see him, in fact, he’s retired which I’m really sorry about that, but there is, you know, another one, but I do see my osteoporosis nurse usually on the ward every three months, and she really knows, I mean my, the consultant said when the osteoporosis nurse was in the room and she was talking to me, and he looked at me and said, “She knows more than me.” [laughs]. So they certainly give you confidence. They really are good.
 
Can you tell me more about it?
 
My first appointment there, it was really very good. I didn’t have to wait too long for it, and my osteo nurse was, she came out for me, filled a little form in to let them know what I was taking and then she was in the room, and he introduced himself, in his shirt sleeves, he was really lovely, and then I explained to him, and then he looked on the screen, and he said, “Well look, that’s your bone. Its broken.” I think before that he said, “Stand up and show me where the pain is.” And the, the nurse said to me, and they looked at each other, and they said, that I was a textbook case. And she said, “Is it agony like, when you’re like bending over the bench to make something. You know, over the ironing board.” And I had been afraid to tell people that, because I thought they’d think, for goodness sake, you know, little jobs like that, what’s she moaning about? But that is when you just do that little bend, you know, the nerve endings were going mad.
 
And so, we talked about that and then he explained about, I mean he didn’t know an awful lot about kyphoplasty either really, so he would like to refer me, if that was all right and I said, “Yes.” And then the osteo nurse took me into her room. I said goodbye to him, and then I went into there and then she went through, and she gave me lots of leaflets, explained them to me. And was just wonderful really. 
 

Noreen’s diagnosis was a shock but she realised that she had worked her body quite hard when...

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So it was a shock, I must say…
 
To be diagnosed?
 
To be diagnosed with that, because I thought that I was tough. Well I am tough, but then again with my husband having rheumatoid arthritis you see, I have always done a lot of lifting. So my wrists are not good, and my hands are not good, because he couldn’t do it. So if there was furniture to move, I did it. You know, I was always… and then I had a lot of years looking after him in the end. But that was lower back though, looking after him, and everything is the wrong height, the chair, the bed, the bath, so looking back I have worked my body quite a lot so that is the reason for the wear and tear I suppose.
 

Noreen talks about her experiences of being referred by her GP to the pain clinic.

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Okay so if you take me through after the operation how you felt and why they send you to the pain clinic?
 
Yes, well after the operation, although I did, my pain was less than it was before the operation I was still having a tremendous lot of pain. And although I was putting up with it, my GP was just trying to help and she said, “Why don’t you try the pain clinic, just to give you …” Because pain is exhausting. I didn’t realise how exhausting pain could be. I realise how my husband would have suffered all those years really. So, she said you can’t lose by it, you know, and they may give you a nerve ending block. So I agreed. So she was just thinking of something to relief the pain other than tablets because she knows that I just can’t cope with them.
 
Yes. So you went to the pain clinic?
 
Yes.
 
And what happened?
 
Well then, you know, we had a chat and he went through all the tablets that he could give me. But he realised that, you know, and they tend to give, I mean people with a lot of pain tend to get, tend to get depressed. Well I knew I wasn’t depressed and I didn’t want any of those drugs that, because they have all got such side effects and I know that I just can’t cope with them. So, so then he went on to and I said, oh and he said, “What did you expect when you came here?” And I said, “Well my GP thought that I may be able to have a nerve block to relieve me some pain.” So he said, he said, he would be, quite happy to do it for me, he said, “And some patients it lasts for six months, some patients it only lasts a fortnight,” the pain relief. And he said, he wouldn’t like to be doing it on me every fortnight and then he started telling me what he put in it. And when he said steroids, I sort of said, “Huh steroids?” He said, “Yes and you can’t have them.” I said, “No.” So he said, “That’s ruled that out. So that was the tablets ruled out. That’s that ruled out.” He was ticking the boxes and then acupuncture. So I said, “Yes, whatever you say.” So that was when I tried it.
 
And …
 
And, and it just didn’t work for me. It did say in the leaflet. They always give you leaflets which are brilliant. Which surprised me, that I didn’t really know that there was side effects with acupuncture. But, as the nurse said, “There’s side effects with everything.” And I suppose now they have got to tell you everything, what with people taking them to court and everything.
 
So I went weekly for five weeks. But it didn’t do any good at all. In fact it seemed to aggravate it. So I came to end that. And she saw me again, and she did offer me, she did offer me another course of pain management. It was two weeks, two days a week for six weeks, two hours, so that’s like four hours a week. Going, travelling to the hospital, and parking, and all the things she was tell me that they were doing, and really I didn’t it was, you know, I said, “No.” I said, “Can I think about it?” And she said, “Certainly.” And gave me a number and I wanted to she’d give me an open appointment
 

Noreen is happy staying at home where she has everything she needs plus a supportive bunch of...

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I don’t go on holiday because I couldn’t face it. That is another thing, I could not face packing. To pack would be absolute agony. Well my son said if I wanted to go to [daughter] in [city], he said, you know, he’d come and help me pack and everything and take me down, and you know, but what I couldn’t put up with is somebody else’s, somebody else’s bathroom. Mine is just, you know, I have got everything ready. I don’t have to bend, you know where everything is, where if I go to somebody else’s house, I have got my vanity case and it’s usually on the floor and bending, and I think, well I can’t be doing that. So I am quite happy to be at home.
 
I am a happy person. So it doesn’t worry me that I don’t go on holiday. It’s nice to go out. My friend will take me out on my birthday. Nice to go out for a day. We went to a concert. And I can get comfortable in the Assembly Rooms. The chairs are quite nice. If I can get a nice chair, you see I have been comfortable today, because I’ve not been doing anything have I.
 
Because it would be too much for me. And I couldn’t travel on trains and things any more. Definitely not. Because I couldn’t carry my language. I know you can get porters, you can get people to do it for you. But its all just, I just don’t want it, I don’t want to go down that route. I just want to be at home, where I know my chairs, I know everything and you know, if I was really poorly people would come in and see me and help me. So really I am quite happy the way I am. I like my own company. I love the television. I love my music. And there we go [laughs].
 
And you have your friends?
 
I have got, oh lots of friends. Where would you be without friends?
 
What do you do with them?
 
Well I mean sometimes they just come and have a coffee or as I say we go to the Assembly Rooms. We have season tickets which start again in September and goes through till May. Once a month. Wonderful orchestras from all over the world really. And we meet. I get picked up by friends, and three of us. There are five of us go, and then we sometimes meet other people at the Standing Order, we call it, it used to be the Westminster Bank [laughs]. And that’s near the Assembly Rooms. So we go there and have something to eat and then as long as I’m sitting, you know, I’m fine really. Sometimes I am not very good. But I haven’t had to come out so far. So…
 
That worries me a little bit when, if you are with somebody and you are not very well and it’s going to spoil their evening as well. But I have got over that a bit now, because they have said, “Look, don’t worry about it, because that’ll make you worse.” Quite right. “And if you are poorly. If your back is going mad. We’ll take you out. Don’t worry about it.” So I don’t any more. And, and, then when I can get into [city] on the Thursday morning, because I can still drive. Comfortable in a car. I mean I haven’t had to do this either for a while, so I’m obviously better than I was.  
 

Noreen’s kyphoplasty took place later than the recommended time after a fracture so her operation...

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However, all back operations are treated as severe, or words to that effect, and but because I was, with this kyphoplasty it should be really done immediately after the bone has broken. Mine was say in six months, and the bone had, had healed wrongly in this wedge shape. So they couldn’t get this procedure in, which they had to drill.
 
Now I should tell you what they do in the beginning. I was given a general anaesthetic and it’s a big procedure in the theatre apparently, lots of MRI scans and lots of all these things.
 
Anyway, they couldn’t get, first of all they put a rod, a very small rod, into one side of your vertebra, the broken one and then they insert a balloon which they blow up and that makes a nice space, they remove the balloon and they put some bone cement in there, which makes the bone the right shape again.
 
With me, it took longer, because it had all healed and there was no space for this little rod to go in. So they drilled, they had to drill, which for me, it took, I think it took over two hours, where it should have just taken about an hour. But you know, that’s not going to happen to everybody. You know, if you are sent straightaway, you know, that should only be a small procedure.
 
I was in hospital over night. Yes, I was just in hospital overnight. I was in a special ward. I can’t remember the name of it, but in a special ward, looked after very well, and came home.
 

Noreen recommends kyphoplasty to others because although she is not pain free, her spine is more...

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Saw the consultant, I think it was a fortnight afterwards and had the, there were only two stitches. I didn’t see it of course, I couldn’t see it. And then although I did have less pain, it wasn’t, it wasn’t, I wasn’t pain free. A lot of people are pain free after it, because it just takes it from that, you know, the nerve ending. And but I have got a lot of pain, because I have got a lot of wear and tear. I had no idea that I would have had all this wear and tear, which is arthritis in my spine. So I am still getting a tremendous amount of pain underneath my shoulder blades and shoulder blades and right round my middle, my ribs.
 
However, I saw, I have seen the surgeon a few times, and I saw him last February which is a year after, and he was very pleased with my actual spine, sorry about the pain, but he said, you know, you will with your condition, you are going to get pain. But my spine was more stable. Because this bone that was in a wedge shape was now the proper shape and made my spine, instead of my spine toppling over and may be having a, a bump, a hump eventually, that shouldn’t happen, unless I have another break.
 
Well through this, I would have certainly had another break had I not had this operation, I’d certainly had another break. So, so I am all for this, you know, it’s a really good procedure.