A-Z

Stroke

Getting a diagnosis of stroke

A stroke occurs when the blood supply carrying oxygen and nutrients to part of the brain is cut off or reduced by either a clot in, or a leak from, a blood vessel. Different parts of the brain control different activities like movement, balance, speech, sight, hearing, understanding and memory. Different sides (hemispheres) of the brain control different functions, for example, the right side of the brain controls movement and feeling in the left side of the body and vice versa. Loss of blood to an area of the brain can causes selective loss of the function controlled by that part of the brain. A stroke can often be diagnosed by looking for changes in function or feeling. 

Diagnosis, tests and monitoring

In the first few hours and days in hospital after a stroke, assessment, monitoring and treatment are very important because they limit the effects of the initial event, reduces the likelihood of further extension of the brain damage, and prevents complications which can be fatal. Lack of appropriate care at this time can result in increased likelihood of death, as well as the effects of the stroke being much worse than they should have been.  

Some people recalled ongoing monitoring of their blood pressure or neurological tests in the first 24 hours. These could sometimes disturb sleep although people found it reassuring that they were near the nurses' station and were carefully monitored.

In the first few days many people also went through further diagnostic tests establish the cause of the stroke and which parts of the brain had been affected

Problems getting a diagnosis

In some cases, individuals had a difficult time getting a diagnosis. Some individuals signs were dismissed as minor ailments (i.e., headache) and they were sent home. They were not given medical attention for stroke until the signs persisted. 

Initial tests 

Tests to diagnose a stroke are usually conducted as soon as the person seeks medical help. Tests include neurological tests for reflexes, movement, sensation, vision and mental understanding. Some also had a CT (computerised axial tomography) scan at this stage. A CT scan should be done at once although this was not always the case (see below). Some people also had tests to identify the cause of their stroke including blood pressure and blood tests for cholesterol, clotting and blood sugar.

Most people had these tests although some found them difficult to recall as they described feeling “pretty out of it” at the time. 

As high blood pressure is a major risk factor for stroke, blood pressure was routinely checked. In most cases high blood pressure did not require immediate action. A few people, however, told us that their blood pressure was exceedingly high and were given medication to stabilise it quickly.

 

In casualty his blood pressure was found to be very high so he was immediately given medication...

In casualty his blood pressure was found to be very high so he was immediately given medication...

Age at interview: 60
Sex: Male
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So I was then given a series of tests in the casualty Department by a very experienced doctor. Again, I was very lucky. The doctor told me that my blood pressure was 240 over 180 which is rather high and gave me a couple of magic pills to bring it down in a hurry and I was then taken to the medical ward and diagnosed of, as of having a stroke. 

A few recalled questions to test their memory and understanding such as “Who is the prime minister?” “What date is it” or being asked to recall their address or do simple maths. These are part of a standard test to identify whether memory parts of the brain are affected. Some commented that they may have struggled with some answers even before the stroke - this is taken into account in people's responses. 

 

Her sister told her about a stroke that occurred during an operation. Later she was asked...

Her sister told her about a stroke that occurred during an operation. Later she was asked...

Age at interview: 79
Sex: Female
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Can you remember who told you after the operation that you'd had a stroke?

Who told me?

Mm hmm.

My sister mentioned it. She said to me and she told me and after she said it to me, I said to myself 'I'll have to let, let it sink in for a while', you know. I'm not going to say, and then after a wee while when I, you know, I gave it a thought and I just accepted it and she was expecting some reaction from me because I remember her saying, 'Oh, she's in denial, she's in denial' but I wasn't in denial at all. I just accepted it. Somehow or other I got the strength to accept it and that's the way I've been ever since. But my husband didn't say very much but he's not, he's well over 80 and he didn't understand very well and my sister and my son didn't want to tell him too much, you know, they didn't want to say to him. So he's still not really understanding it properly I don't think but they were, it was my sister that told me really and then there was some ladies came in afterwards and they were social workers or somebody, I don't know, and they were asking me the queerest questions, you know, about, first of all, they would ask me who, what's the prime minister's name, what's the Queen's name and things like this, you know, probably thinking, 'Is her mind alright?' sort of thing.

Tests of sensation sometimes involved using pins or pinching the person to see if one side of the body is numb. 

 

His wife found it difficult to watch the sensation tests which involved pinch and pins pricks but...

His wife found it difficult to watch the sensation tests which involved pinch and pins pricks but...

Age at interview: 47
Sex: Male
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When the stroke first happened, did you have any investigations at all and can you tell me about any of the investigations that you had?

Well, some of the things, as I say, when I first went to Casualty and this is like things that were reported to me by my wife, they did a lot, they did like a sensation map I think they called it, just to try and suss out where I had any kind of feeling and how much the stroke had taken away the feeling to my left side, so they used just, just pins basically, stabbing my body and pinch me and things just to see if I had any feeling at all down my left side. My wife said, said it was quite awful for her to watch, people pushing needles into my arm and the side of my leg and me just lying there quite happy to let it happen, didn't feel a thing. I had no sensation at all to my left side. 

In a few cases initial tests failed to pick up a stroke usually when the person was younger or the symptoms were unusual. A young woman who had unusual visual symptoms was sent home with a suspected migraine. It was later recognised that she had had a stroke after her husband saw a poster on stroke and asked for further tests. 

 

The hospital initially diagnosed migraine but later her husband saw a poster on stroke and...

The hospital initially diagnosed migraine but later her husband saw a poster on stroke and...

Age at interview: 31
Sex: Female
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So we went back to the hospital and' I got kept in that night again. Right. They were going to run more tests, they still thought it was a migraine at that point but my pupils, I heard one of the doctors saying that my pupils were still a bit dilated and but not to worry about it but my husband was then saying, 'Well, surely a migraine you wouldn't have that', but he had said there's different types of headaches, so, and they can be quite serious. I got kept in again that night and' my husband went home to get some stuff and bring them back and when he was in the lift, he'd read something about strokes. It was a really big thing on the wall telling you about strokes and what the side effects can be and everything and he read it and' said to me that he'd read this thing and it sounds like I've had a stroke. So he then went to the doctor and said, 'I think she's had a stroke' and the doctor had said 'She's too young for a stroke' and my husband disagreed. He said, 'I disagree with you, I'd like you to check her out for a stroke' and he went, 'She's too young for a stroke'. So he then went to another doctor and they basically said I was too young as well for a stroke. But I think he got through to the other doctor. He said, 'We'll put her in for a brain scan or CT scan, MRI'. So this was on the Monday morning now that I got the MRI scan.
 

Test of the heart and circulation

Initial tests sometimes looked at heart function and other parts of blood circulation. These are carried out because a stroke can be due to a clot that has formed in the heart. Tests include chest x-rays, echocardiogram (echo) and electrocardiogram (ECG). Two younger people had specific tests later on to look for a hole in the heart, which can sometimes cause a stroke. 

Brain scans - MRI and CT

Most of the people went on to have either a CT (computerised axial tomography) scan or MRI (magnetic resonance imaging) scan of the brain to confirm the diagnosis of stroke. Scans identify the cause (clot or bleed) and show the areas of the brain that have been affected. These scans were usually carried out within days of the stroke although a few people had to wait longer. Because it is recommended that scans are carried out within 24 hours if not immediately for more severe symptoms, some people found the wait annoying.  

In a CT scan you lie on your back with your head inside the scanner. Dye may be injected so the results can be seen more clearly. Most people found CT scans okay, although for both types of scan it is important to stay still, which was sometimes difficult when people were feeling unwell.

During an MRI scan you lie on your back and go into an enclosed tunnel; the machine is quite noisy. While some people found this okay, others found it upsetting, particularly if they felt claustrophobic. Most people realised that it was something you just had to get through and used different distraction strategies - one woman mentally went through the clothes in her wardrobe, another prayed. Sometimes there was music playing to mask the noise and a mirror to look outside of the scanner. Most people were given a panic button to stop the test. 

 

Explains that a MRI scan was scarier than the CT but music was playing and there was a mirror....

Explains that a MRI scan was scarier than the CT but music was playing and there was a mirror....

Age at interview: 67
Sex: Female
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Yes so the CT scan stands for computerised tomography yeah and then they can tell what's happening if which parts of your brain have been affected yeah? And it's the same with the MRIs they can tell and there was one tiny, tiny spot, a tiny little lesion, and it was said to me that was probably when I've had some high blood pressure.

Right.

Yeah, yes, yes.

And what was it like having those scans?

Well you see this scan is fine, it's kind of like a big wheel you go in there, that's fine but the MRI is very scary because it's like, like a coffin, you go in there and then it closes all in onto you and they play some music and you have got a mirror, you can look there and it's making a lot of noise.

It's like a what?

Making, it's making a lot of noise.

No you said it was like something, it was like a?

It was like a coffin.

Oh a coffin

A coffin it's all closing in onto you and of course if you are claustrophobic like me, I am claustrophobic and when I had my very first MRI scan I did the Lord's Prayer very fast, Our Father in heaven, hallowed be they name, very, very fast.

Vascular scan of carotid arteries

Sometimes a stroke is caused by a clot which results from 'furring up' of the carotid arteries on either side of the neck. If this was a suspected cause of the stroke then people usually had a carotid Doppler scan (carotid ultrasound). In this test gel is placed on the neck and a small ultrasound probe is passed over the skin. Sound waves which are audible to the patient and visible on a screen detect the blood flow. Several people described the sound of the test and the anticipation of waiting for the next pulse of blood. 

 

Describes the carotid Doppler scan which measures blood flow in arteries of the neck. He had a...

Describes the carotid Doppler scan which measures blood flow in arteries of the neck. He had a...

Age at interview: 68
Sex: Male
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Can you describe how they used the Doppler scan on your neck? Some people might not know.

Oh no. Well, it was like it, it's like a little microphone and they put it against here like that phew, phew, you know, it, its obviously picking, they're measuring the blood flow through there and what you hear is phew, phew, phew, phew, phew, phew and of course that is transmitted to the monitor and you can see where the whole thing, it's, I don't know how when they actually a camera of sorts and then you can certainly feel, you can see it going through like that and she said to me, 'Oh yes, that's blocked that's clearly blocked it's not getting round. We'll try in different positions like that', and it's there apparently here (pointing to neck) and she said, 'Yes, that's blocked' and I'm told that you think, well if, I'm told if you if you can get it quickly, they can give some sort of a drug that will disperse it but I think in my case, it was totally blocked. 

Now, one doctor came to look at me and he said, 'Well', he said, 'Sometimes it isn't a block in the, in the actual arteries. It's sometimes there's a piece of the artery gets flakes off, not flakes off but it, it sort of comes off like a flap on the artery and, and it then comes across like that and blocks like a non return valve of some sort' He said, he said, 'It could be that' he said. Because there's no reason why I'd had a block in, in there at all, he said, because it seems to me as, he said it could be the reason why it did that, it was a flap'. But there again my own doctor said he said it may be the case but there again they had the eye later which suspects that probably there's something floating around in the actual system so I, we said OK, well, it might be a thought, I thought, maybe a thought but I don't think it was the case. It was something blocked but what it does, although it's blocked the blood has to go somewhere and it, apparently it finds other ways round to get the, into the brain, you know, it gets in the and, and that's what happened. So that's why you get a bit better but I know no more than that at all, that's all I know.

People who had been having Transient Ischaemic Attacks (TIA's) were sometimes offered an operation to clear a blockage - carotid endarterectomy (see 'Surgery'). Unfortunately, if a full stroke has occurred, surgery will not help restore function. 

 

A carotid Doppler scan of neck arteries revealed that surgery may help to restore blood flow and...

A carotid Doppler scan of neck arteries revealed that surgery may help to restore blood flow and...

Age at interview: 84
Sex: Male
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You mentioned that you had a scan of your carotid artery. Could you describe to me what the scan was like?

You just like down and they put the, put the cream on your, on your neck and they, they rubbed this thing over and I could see the, the, the screen, the picture on the screen, they were moving it about and they were taking shots and recording of it and that was painless and the girl was quite informative. She told me everything what, what they were doing and, of course, they look at, the doc, the specialists look at these and decided that an operation was necessary to clear the artery out because of build up, of obstruction in there. 

Other tests

People who have had a brain haemorrhage sometimes had tests to look for a malformation in the blood vessels of the brain. In  an angiogram a dye is injected into the brain through a catheter inserted in the groin area. The site of the injection is numbed but you are usually awake. Both people that we spoke to who had an angiogram found it relatively painless. 

 

She said that the angiogram was a weird sensation but not painful.

She said that the angiogram was a weird sensation but not painful.

Age at interview: 54
Sex: Female
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An angiogram is an injection of radio opaque dye that is put in your arm, travels through the bloodstream and they take x-rays and they can see where there is maybe a tear in an artery or venal wall. The last angiogram I had was April last year and I'm due to have another one in October because 20 years after my first sub-arachnoid I had a second sub-arachnoid, treated at a different hospital and treated in a very different way.

So with the angiogram, do you have to have any anaesthetic or do they give you a sedative or anything?

No nothing. They like you awake so it's quite a weird sensation. As a nurse, I can watch the monitor and know exactly where they are. I can't say I actually felt the catheters because arteries don't have nerve endings for that but you can see it on the monitor and when they inject the dye, the radiologist will say, 'It will feel warm behind your right eye', and he injects the dye and you see the dye going through and, yes, it does feel warm behind your right eye but, no, no anaesthetic, no sedative, could have done with a double Scotch at the time [laughter] but fairly painless. 

Reaction to the diagnosis

People reacted differently to their initial diagnosis. Some said that they did not react because they were too 'out of it'. Many were shocked, expressed disbelief at what had happened, or found it difficult to accept. Others were confused, angry and upset and some cried a great deal. Some initially underestimated the severity of what had happened to them. A few said they just accepted it. 

 

He was very unhappy when he was told that he'd had a stroke because he was worried about...

He was very unhappy when he was told that he'd had a stroke because he was worried about...

Age at interview: 69
Sex: Male
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How did you feel when they told you you'd had a stroke?

I was on the stretcher at that time, you know, when he told me, 'You've got a stroke'. 

It is not very happy news, you know. I got a stroke and I still am, am the stroke person, you know. I could not move this hand' Totally disable' could not walk myself' Some person have to look after me, you know. Otherwise that is the, that is the, the most dangerous thing happen with the human being. Stroke is the worst thing. 

 

Explains that she just accepted the diagnosis even though it was clear that she would not be able...

Explains that she just accepted the diagnosis even though it was clear that she would not be able...

Age at interview: 83
Sex: Female
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And how did you feel when you realised what had happened?

Well, you just accept it. It has affected your speech and your memory, everything's affected by it and also your mobility. I mean, I drove a car, I, you know, I was a member of the, you know, all different associations. That all goes by the book, I mean, you lose all that, which is a pity. 

Most individuals were given the diagnosis directly while others heard from family members. A woman who experienced a stroke in her twenties was quite frustrated that her diagnosis was not adequately explained to her and that the information went to her father first.

 

Michelle found out that she had a stroke from her father. She was frustrated by the lack of...

Michelle found out that she had a stroke from her father. She was frustrated by the lack of...

Age at interview: 28
Sex: Female
Age at diagnosis: 26
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When you heard the word stroke and that, told that’s what’s happened, what did you feel?
 
I was really shocked to be honest because the, it wasn’t even the doctor that told me, it was my dad. As I came out from the CT scanner there was no doctors there and I could see by my dad’s face. And I said, “What’s wrong?” And he said, “You’ve had a stroke.”
 
How did he know?
 
I don’t know.
 
Oh.
 
I presume the doctor must have been in the room when I was being scanned and he’s come out and told my dad I’d, I don’t know.
 
I think because we are a lot younger doesn’t necessarily mean we don’t want to know what’s going on. Instead of going to parents or partners they need to focus more on the, on the patient and tell them what’s going on rather than everybody else because if we don’t’ understand that makes it so much worse for us.


 

Last reviewed June 2017.
Last updated August 2013

 

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