MRI or not ...?

[annieka 56]

5 years ago my husband was referred by the Memory Clinic to the Royal Neurological Hospital where he had 3 appointments and a thorough assessment. Prior to this he couldn't cope with an MRI on 2 attempts but coped with a CT scan on a mild sedative. He has become afraid/phobic of all things medical and recent blood tests were difficult.
He was given a diagnosis of probable PCA - post corterial atrophy - was offered a lumbar puncture and MRI to give more certainty but he declined and the doctor felt no need to try to put him through this as she was confident in her diagnosis.
We were just referred back to the Memory Clinic as my GP didn't want to prescribe sleeping medication (biggest problem by far now) but I was a bit unprepared for the appointment yesterday.
The doctor went right back to basics on standard tests and said he needed an MRI 'to see what's going on'.
When I started to explain about the Royal Neurological Hospital diagnosis she seemed to brush it aside. Also insisted 'most people' cope with an MR I with a sedative and they do not offer them under anaesthetic unless someone has an urgent life threatening condition.

I don't know what to think or do about this. I do a lot to keep him comfortable and not scared e.g. Blood tests, vaccinations when I just try to whizz him through before he starts to panic. But an MRI....?
Even I can't see the particular point at this stage. His dementia is advanced. He has the visual problems of PCA (can see a plane but not a step in front of him) cannot dress himself, paces non stop, has lost his language skills. So what could an MRI show in terms of what's going on.
What would you all suggest please

 

[Jale]

Not quite the same, but when we were trying to get a diagnosis for Mum some years ago I didn't let mum have a brain scan (not sure if it would have been an MRI, but possible was) because I knew that she would not have coped with it and I wasn't prepared to have her frightened/upset. A consultant looked at her medical records and said that although he wasn't 100% certain he was 99% certain that she had vascular dementia. By not allowing mum to have the scan didn't stop us accessing care/help.
Hopefully others will come along who can give better advice than me - good luck

 

[Palerider]

5 years ago my husband was referred by the Memory Clinic to the Royal Neurological Hospital where he had 3 appointments and a thorough assessment. Prior to this he couldn't cope with an MRI on 2 attempts but coped with a CT scan on a mild sedative. He has become afraid/phobic of all things medical and recent blood tests were difficult.
He was given a diagnosis of probable PCA - post corterial atrophy - was offered a lumbar puncture and MRI to give more certainty but he declined and the doctor felt no need to try to put him through this as she was confident in her diagnosis.
We were just referred back to the Memory Clinic as my GP didn't want to prescribe sleeping medication (biggest problem by far now) but I was a bit unprepared for the appointment yesterday.
The doctor went right back to basics on standard tests and said he needed an MRI 'to see what's going on'.
When I started to explain about the Royal Neurological Hospital diagnosis she seemed to brush it aside. Also insisted 'most people' cope with an MR I with a sedative and they do not offer them under anaesthetic unless someone has an urgent life threatening condition.

I don't know what to think or do about this. I do a lot to keep him comfortable and not scared e.g. Blood tests, vaccinations when I just try to whizz him through before he starts to panic. But an MRI....?
Even I can't see the particular point at this stage. His dementia is advanced. He has the visual problems of PCA (can see a plane but not a step in front of him) cannot dress himself, paces non stop, has lost his language skills. So what could an MRI show in terms of what's going on.
What would you all suggest please

Hello.

I think you have a good question, but the real issue is if he was to have an MRI would he be able to lie still for the process of having it done? If the answer to that is no I don't think anyone would disagree with not having it done. There comes a point when PWD can't tolerate procedures no matter how well intended.

My mum was declined an ECHO recently because she would not be able to stay still or tolerate the investigation and I agreed with no further investigation unless it was deemed absolutely necessary as in palliative care.

 

[annieka 56]

Not quite the same, but when we were trying to get a diagnosis for Mum some years ago I didn't let mum have a brain scan (not sure if it would have been an MRI, but possible was) because I knew that she would not have coped with it and I wasn't prepared to have her frightened/upset. A consultant looked at her medical records and said that although he wasn't 100% certain he was 99% certain that she had vascular dementia. By not allowing mum to have the scan didn't stop us accessing care/help.
Hopefully others will come along who can give better advice than me - good luck

Thanks. He wouldn't be able to be still. It would take an amazing sedative....I just can't see how it could happen.

 

[Pejic]

You are entitled to a better explanation than "to see what's going on". Presumably they want to verify something before prescribing a new medication, they should be able to explain what the MRI might tell them to influence their decision. You can then ask them to address your concerns - not brush them aside.

 

[imthedaughter]

5 years ago my husband was referred by the Memory Clinic to the Royal Neurological Hospital where he had 3 appointments and a thorough assessment. Prior to this he couldn't cope with an MRI on 2 attempts but coped with a CT scan on a mild sedative. He has become afraid/phobic of all things medical and recent blood tests were difficult.
He was given a diagnosis of probable PCA - post corterial atrophy - was offered a lumbar puncture and MRI to give more certainty but he declined and the doctor felt no need to try to put him through this as she was confident in her diagnosis.
We were just referred back to the Memory Clinic as my GP didn't want to prescribe sleeping medication (biggest problem by far now) but I was a bit unprepared for the appointment yesterday.
The doctor went right back to basics on standard tests and said he needed an MRI 'to see what's going on'.
When I started to explain about the Royal Neurological Hospital diagnosis she seemed to brush it aside. Also insisted 'most people' cope with an MR I with a sedative and they do not offer them under anaesthetic unless someone has an urgent life threatening condition.

I don't know what to think or do about this. I do a lot to keep him comfortable and not scared e.g. Blood tests, vaccinations when I just try to whizz him through before he starts to panic. But an MRI....?
Even I can't see the particular point at this stage. His dementia is advanced. He has the visual problems of PCA (can see a plane but not a step in front of him) cannot dress himself, paces non stop, has lost his language skills. So what could an MRI show in terms of what's going on.
What would you all suggest please

Can you ask for a second opinion? I am not agreeing to any new tests for dad in general, the scan he had took three attempts and he's not phobic.

 

[annieka 56]

Not quite the same, but when we were trying to get a diagnosis for Mum some years ago I didn't let mum have a brain scan (not sure if it would have been an MRI, but possible was) because I knew that she would not have coped with it and I wasn't prepared to have her frightened/upset. A consultant looked at her medical records and said that although he wasn't 100% certain he was 99% certain that she had vascular dementia. By not allowing mum to have the scan didn't stop us accessing care/help.
Hopefully others will come along who can give better advice than me - good luck

that's good advice thank you.
we were in that position 4/5 years ago - he couldn't cope with it or a lumbar puncture, he could express his own wishes strongly and clearly then and the consultant was prepared to make her diagnosis based on everything else available ( he did manage a CT scan)
It just now feels like we have taken several steps back in time and I'm a bit thrown by it to be honest.

 

[annieka 56]

Can you ask for a second opinion? I am not agreeing to any new tests for dad in general, the scan he had took three attempts and he's not phobic.

Thank you. I will have to do that. In any case all I wanted was something appropriate to help him and consequently me to sleep! I couldn't sleep last night after the appointment for worrying let alone from him getting in and out of bed 100 times from 3 am and pulling the duvet as if he was making the bed with me in it!

 

[annieka 56]

Hello.

I think you have a good question, but the real issue is if he was to have an MRI would he be able to lie still for the process of having it done? If the answer to that is no I don't think anyone would disagree with not having it done. There comes a point when PWD can't tolerate procedures no matter how well intended.

My mum was declined an ECHO recently because she would not be able to stay still or tolerate the investigation and I agreed with no further investigation unless it was deemed absolutely necessary as in palliative care.

 

[annieka 56]

Can you ask for a second opinion? I am not agreeing to any new tests for dad in general, the scan he had took three attempts and he's not phobic.

yes I will have to do that thanks

 

[imthedaughter]

Thank you. I will have to do that. In any case all I wanted was something appropriate to help him and consequently me to sleep! I couldn't sleep last night after the appointment for worrying let alone from him getting in and out of bed 100 times from 3 am and pulling the duvet as if he was making the bed with me in it!

Oh dear. I know some people have moved to twin beds for this reason - or separate rooms. I hope you can find a solution.

 

[jennifer1967]

my husband had an MRI scan before diagnosis and he has said never again. he coped with CAT scan but he felt claustrophobic in the MRI. hes already had the tests so i would question why he would need more tests.

 

[Jaded'n'faded]

I don't understand why there is such variation in what is 'required' for diagnosis.

I moved mum to a care home after a fall, bang on the head and hospital stay. Before that she was fairly early stages (as diagnosed by me) but hadn't seen a doctor in years. She had a couple of scans at the hospital that showed a chronic sub-dural haematoma but that resolved and she remained undiagnosed at that time. She was referred to a consultant who visited her in the care home and she had another CT scan (no MRI). The consultant diagnosed probable vascular dementia then changed that to mixed dementia after speaking to me on the phone about her previous behaviours.

I don't know if the consultant bothered to do any tests - maybe the MMSE as mum really couldn't have attempted anything more. But there was never a suggestion she needed an MRI scan. Just as well - mum would have screamed blue murder.

 

[Lawson58]

I think this one of those situations where you need to decide if the procedure fits the purpose for which it is intended. You know your husband has quite an advanced illness and perhaps an MRI may advance a more definitive diagnosis but is this going to achieve anything for you both?

My husband had a PET scan about a year ago and it turned up nothing, meaning that he no longer had a diagnosis of Alzheimer’s but it didn’t further any investigation which might have given us an idea of what he actually does have.

Perhaps you need to ask the doctor what specifically he is looking for.

 

[annieka 56]

Hello.

I think you have a good question, but the real issue is if he was to have an MRI would he be able to lie still for the process of having it done? If the answer to that is no I don't think anyone would disagree with not having it done. There comes a point when PWD can't tolerate procedures no matter how well intended.

My mum was declined an ECHO recently because she would not be able to stay still or tolerate the investigation and I agreed with no further investigation unless it was deemed absolutely necessary as in palliative care.

He would not be able to keep still. He would definitely have to be under anaesthetic!! The doctor at his appointment said most people manage with a sedative but he just about coped with a quick CT scan with a sedative.
all I wanted from this appointment was something appropriate to help him sleep and end up being told he needs an MRI - 4 years after a diagnosis of a rare form of dementia....I am going to have to look for CB oil alternatives I think.

 

[Palerider]

He would not be able to keep still. He would definitely have to be under anaesthetic!! The doctor at his appointment said most people manage with a sedative but he just about coped with a quick CT scan with a sedative.
all I wanted from this appointment was something appropriate to help him sleep and end up being told he needs an MRI - 4 years after a diagnosis of a rare form of dementia....I am going to have to look for CB oil alternatives I think.

Sedatives have their limits. I don't have much to offer because aiding sleep in people with dementia becomes quite difficult as I know only too well with my mum. Might be best to contact the person who has recommended MRI and ask them is it really necessary at this stage -perhaps they will explain in more detail why they want it and while your on the phone ask about sleep issues.

 

[annieka 56]

You are entitled to a better explanation than "to see what's going on". Presumably they want to verify something before prescribing a new medication, they should be able to explain what the MRI might tell them to influence their decision. You can then ask them to address your concerns - not brush them aside.

Thanks and I meant to reply sooner.
My husband has been re referred to the Memory Clinic by our GP to address the issue of his sleeping. GP didn't feel it was appropriate to prescribe without advice which is fair enough.
Unfortunately it has been more trouble than its worth so far.
The Memory Clinic has wanted to go back to basics even though he was referred by them to the Royal Neurological Hospital in 2017 and had in depth assessment with a diagnosis of probable PCA Post Corterial Atrophy with no need to try to put him through an MRI.
I didn't realise no information joined up - silly me - and I am now 5 months down the line from the initial plea to the GP about sleep with 90 minutes 2 hours max from 10 pm and the full on day starting at 5.30 am.
It's torture. I can't think straight now.

 

[jennifer1967]

Thanks and I meant to reply sooner.
My husband has been re referred to the Memory Clinic by our GP to address the issue of his sleeping. GP didn't feel it was appropriate to prescribe without advice which is fair enough.
Unfortunately it has been more trouble than its worth so far.
The Memory Clinic has wanted to go back to basics even though he was referred by them to the Royal Neurological Hospital in 2017 and had in depth assessment with a diagnosis of probable PCA Post Corterial Atrophy with no need to try to put him through an MRI.
I didn't realise no information joined up - silly me - and I am now 5 months down the line from the initial plea to the GP about sleep with 90 minutes 2 hours max from 10 pm and the full on day starting at 5.30 am.
It's torture. I can't think straight now.

wouldnt the mental health team be better. my husband was referred there for additional meds. the memory clinic only tested and diagnosed. ours dont do anything else

 

[annieka 56]

wouldnt the mental health team be better. my husband was referred there for additional meds. the memory clinic only tested and diagnosed. ours dont do anything else

I honestly don't know. Do you access them through social care? It's awful to think I have been in the middle of this for 5 years and don't even know who's who. I have been stumbling through a minefield.

 

[jennifer1967]

I honestly don't know. Do you access them through social care? It's awful to think I have been in the middle of this for 5 years and don't even know who's who. I have been stumbling through a minefield.

no referral from gp doctor