Frank - Interview 05

Brief Outline:

Frank lost his speech and use of one arm at the end of a long-haul flight. He was told he had a hole in his heart which may have contributed to the TIA, but he has decided not to have an operation to repair it.

Background:

Frank is retired and in his 60s. He is married with two adult children. Ethnic background/nationality' White British.

More about me...

 Frank was coming home on a long-haul flight one weekend in 2009 when he realised he had lost the use of one arm and could not talk. A colleague who was also on the plane felt Frank needed medical attention, and so alerted the authorities at Heathrow. Frank was reluctant to go to hospital as he just wanted to get home, but the police were called and insisted he should be taken to hospital. The hospital told him he had had a stroke or TIA, but he discharged himself. His wife came to pick him up to take him home. By this time his arm had recovered, and his speech improved as the day wore on. By the evening he felt well enough to go out to dinner with friends.

 

He booked an appointment with the GP on Monday and was immediately referred to a research clinic at a specialist hospital and attended the same week. One of the tests they performed was a bubble echocardiogram, in which a bubble of saline is injected into a vein in the arm so the staff performing the echocardiogram can track the progress of the bubble through the circulatory system. This showed that Frank has a previously undiagnosed hole in the heart, which is thought to affect up to 25% of the population. It can be linked to TIA and stroke, and also to migraine. He was offered an operation to close the hole, but having looked at the available evidence from studies, particularly in the US, has decided he does not want to go ahead. 

 

Frank has had no further symptoms since the first incident, though he feels even now, six months on, that his speech has not entirely returned to normal. He was in theory retired before he had the TIA, but in fact was still doing a lot, and had just been to a stressful international conference at the time it happened. He has since tried to cut back how much work and travelling he takes on, and continues to take the medication he was prescribed, from which he has few side effects.

 

He is pleased to have been treated in a research clinic and feels the care has been very good, but he would like to know more information about what the research is trying to uncover and how his personal data will be used. Sometimes he felt there was not enough time to sit and discuss things because staff are so busy, especially those not involved in the research project.

 

Frank has had some slight swelling of his fingers and toes, and gets headaches sometimes but it's difficult to know if it's a result of the medication he's taking

And you’re still taking all that medication?

I’m still taking the medication, yeah.

 

Have you had any side-effects from that?

 

I don’t think so, no. I mean, I think on occasions I’ve thought maybe the toes and fingers may be slightly tight, but not much. Really, no. I get some headaches but I mean maybe that’s more closely linked to alcohol if - I just seem to get a hangover earlier, which I think I was getting some time before. So I think I’m maybe getting worse headaches with alcohol than I was. So I’ll just cut down the alcohol maybe. Which is a sensible thing to do.

 

[laughs] Yeah.

 

So maybe headaches, but I mean, they’re not too bad or anything.

Frank describes how he searched for evidence on the value of having surgery to close the hole in his heart, and decided not to go ahead because the evidence was unclear

And with the cardiogram, they can actually see these bubbles go through the hole in the heart, and actually when you put a pressure on more go through. So as a result of this they want to close the hole in my heart. So that was the recommendation, which I wasn’t too happy with, and so I immediately looked up some data, and the NICE [National Institute for Health and Clinical Excellence] study which comes from 2004, 2005 thinks it might be okay but the evidence isn’t fully in favour of it.

Four or five studies in the States come out pretty even whether it does any good or not. There’s lots of other studies which maybe pertain to my particular condition, which are really much in favour of me having it done. I’ve been to see the surgeon in [city] who seems very keen to do it and he’s got an incredible safety record. And I’m about to write the letter back to say that I won’t have it done, because I think my experience is as a lousy research scientist who knows his statistics, but to me the probability of really reducing the instance of recurrent strokes is very limited, if at all, with all the studies I’ve seen. So for that reason I don’t really want somebody sticking something up a vein in my leg into my heart if it’s not really needed.

 

The idea is that if this cause of the stroke was a paradoxical embolism - which means it goes from the vein across to the artery and then gets pumped to the brain - if they close it, that can’t occur. I mean the safety of the person wanting to do it is extremely high, and how efficient it is in actually doing the operation, is also extremely high, but whether it has the effect they want, I’m not clearly convinced. And certainly the evidence in the case of people who’ve had a DVT, which is fairly unusual and possibly or partly avoidable, it’s maybe not absolutely clear that you need it done in that case, is what I’ve read anyway. But of course, the papers I’ve read, well, I’m sure some of the papers are good, but if you’re dealing in a field which isn’t your own you don’t know how good the people are. But I mean, it’s a reasonable consensus, and these are papers in all the big, mainly United States cardiology journals. It might have been better to have discussed it with one of the doctors whom I’ve seen but I mean there hasn’t been that opportunity. I mean, there might be a case, but I’m fairly happy with my decision, actually, so….But I mean, maybe some of the doctors might not be. But there you go.

 

I think my elder son probably wants me to have this operation on the hole in my heart. A very good friend of his is a cardiologist and he’s very keen on me having it done too but, but so be it.

 

You’ve made you’ve made your decision, yes?

 

I think so, yeah. Well, I’m just writing the letter this morning, yeah, so. I mean these cardiologists don’t know what they’re talking about, really, when it comes down to it, you know [laughs].

Frank had a lot of different tests and scans when he joined the research, including a cardiogram which showed he had a previously undiagnosed hole in the heart, which is a risk factor for TIA

So, after that I then went and saw the research project people and went through various things and had a whole series of examinations' a blood test, NMR [nuclear magnetic resonance imaging] - which they repeated after injecting I think some iodine to see where the problem was, which they located a speech problem. My speech had slowly got better over several days. My arm got better within a short time, but my speech carried on for - I mean, it got better over hours, but I’m sure it’s not as right as it was, actually. So yeah, I had that. I had obviously an ECG [electroocardiogram], loads of blood tests, whatever, and apart from the small brain function problem, there doesn’t seem to be anything wrong. I also had a cardiogram, which seemed to show my heart was okay, and then later I had a bubble cardiogram, which showed I’m one of the twenty-five per cent of people who’ve got a hole in the heart. It’s as many as that. Twenty-five per cent of adult people have got a hole in the heart. Which is standard.

And what I obviously had was a DVT [deep vein thrombosis]. I mean, because having sat on a plane for something like ten hours and I hadn’t been taking my aspirin, I hadn’t really drunk very much, I was really sitting pretty still, I was reading or watched a bit of a film. So that was not a good scene, so it was really a DVT, which I probably had a paradoxical embolism, which meant that a clot from a vein passed through the hole in the heart and went to the brain, which is a standard thing. So I later then had a bubble cardiogram, where they inject a saline solution, which has got very fine bubbles in. And with the cardiogram, they can actually see these bubbles go through the hole in the heart, and actually when you put a pressure on more go through.

Frank was interested to know all the 'in's and out's about his treatment and care but staff didn't always have enough time to be able to answer all his questions.

I mean, more information. I mean, more time, of course, is always - even though when I saw people initially at the [second hospital] it was very good at the start, but then later following on the bubble echocardiogram and discussions there, I mean, there wasn’t really time to talk about some of these things, actually. Because I mean you’re now dealing with people who are very busy, a lot of time pressure, and they don’t really have time to sit around and talk to somebody who’s read a few dozen papers on the thing, which might have been nice but , you know. But generally, I mean, the medical side has been extremely good, really.

Frank's symptoms disappeared quite quickly and his speech problems lasted a few days but he says it may not be completely back to normal

On the Monday. I mean, I felt fine on the Saturday. I mean, I was speaking not as, maybe not as well as this, even though this isn’t perfect. I mean, we went out in the evening to see some people, went to see four friends, you know, for dinner, and people thought I’d had maybe a rough day, which I may be had. So I wasn’t that bad, so it’s maybe more a TIA than a stroke. I mean, I really wasn’t feeling that rough. I could actually speak to people that evening, so that was twelve hours later.

 

I then went and saw the [research project] people and went through various things and had a whole series of examinations' a blood test, NMR - which they repeated after injecting I think some iodine to see where the problem was, which they located a speech problem. My speech had slowly got better over several days. My arm got better within a short time, but my speech carried on for - I mean, it got better over hours, but I’m sure it’s not as right as it was, actually.

A few weeks after her TIA Yvonne still had moments when she seemed tired, confused or not quite with it

I mean, you know, a, a couple of weeks after it happened I was coming out of a charity shop I’d just been to, to take some stuff in and my husband said, “Oh I’ll wait for you outside” because I was chatting to the woman in there. And I came outside and all of a sudden my husband almost shook me. And I said, “Oh, oh what’s the matter?” And he said, “You looked horrible. Your face was blank, you didn’t actually know where you were. And you were just about to step into the road.”

 

And how, I mean, was this all around about the same time?

 

Yes.

 

So it was over, over the course a few, a couple of weeks then …

 

Yeah.

 

..that it was still kind of feeling a bit weird?

 

Hm, hm.

 

And how long did it take for you to, I know you were feeling tired after that …

 

Hm.

 

… but how long did it take for those kinds of sort of confused moments …

 

Probably three or four weeks.

 

… to go away. Really?

 

Yeah.

Frank's family came home to visit and it made him realise how fond they were of him

And what about the impact on the family, your wife and kids? How have they felt about it?

 

Well, I mean that was good. I mean it’s, one doesn’t sometimes appreciate how fond they are of you, so I mean, it was very nice how everybody was, actually, it was just quite nice. My son, who lives in London, came back with his girlfriend. That was quite nice too, so - I mean, you know, I mean they seemed to be more concerned about it than me, actually, so that was quite nice actually.

Frank was interested to know all the 'in's and out's about his treatment and care but staff didn't always have enough time to be able to answer all his questions

I mean, more information. I mean, more time, of course, is always - even though when I saw people initially at the [second hospital] it was very good at the start, but then later following on the bubble echocardiogram and discussions there, I mean, there wasn’t really time to talk about some of these things, actually. Because I mean you’re now dealing with people who are very busy, a lot of time pressure, and they don’t really have time to sit around and talk to somebody.