Last reply 1 month ago
Spine MRI

Hi everyone,

I’m having problems accessing an MRI of my spine and wondered if anyone else had encountered similar reluctance by their medical team to order a spine MRI? What rationale was provided for not ordering the spine MRI? All insights and advice welcome.

For background, my annual MRI is coming up in the next couple of weeks. After some recent new symptoms, none hanging around long enough to be considered a relapse, I requested that the MRI cover my spine as well as the head. My MS nurse got back to me to say that they planned to go ahead with only the head MRI, but would add me to the roster for an appointment with a consultant who could consider an MRI of my spine (I hadn’t realised that after my neurologist left over two months ago that I hadn’t be reallocated to a new neurologist…). I responded that unless there is a risk or danger from getting an MRI of my spine, I don’t understand why they wouldn’t just do both at the same time rather than draw things out unnecessarily with a long wait for an appointment just to order a spine MRI, followed by a further wait for another MRI appointment, followed by a further wait for a consultant to follow up on the results. I’m at a loss to understand why they are being so difficult about a request that seems reasonable to me.

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2 months ago

@beefree , it may be down to financial constraints.

On one side of the argument, you’ve already got a diagnosis. But, you’re well within your rights to want to be advised of the exact progress of your MS, so that your treatment can be reviewed in a timely manner.

We do have to push for everything that should already have been offered.

2 months ago

@beefree The thing about common sense? It ain’t that common.

Theoretically, there are many technical issues regarding scanners. The coils to go under you to produce a spine image are broken (I stress, I am guessing). The powers settings (Tesla rating), the software, the configuration changes required etc. But that is a red-herring really.

My money would go on general crapness at the ordering end. One of my favourite questions to ask is: “Please can you help me to understand specifically why you have chosen not to do XXX? It tends to get them squirming, especially if you produce a notebook and pen, give them a beaming smile and ask them to repeat it more slowly as you are writing it down.

I’d also take the saving the NHS resources and the fact that my own time to just drag m,y backside to and fro at their behest is limited so figured for another 15 min in the scanner means we’d all be winners 😉


2 months ago

Hi beefree,

The processes for each hospital will vary but as stumbler mentioned, you do sadly have to keep on pushing but stay resilient and it will work!

I’ve finally had an MRI scan for my spine approved! I used my hermittes symptom as the main reason and also because it’s been a while since I’ve had a spine scan done. What I have found useful which I would advise you give a go is contact the PA of your (new) consultant. And ask them to speak to the consultant and put the request through.

Hope that helps!

1 month ago

Hi everyone,

Thanks for your very helpful responses.

In the end, I dropped it. Not because I’m unwilling to push the team, but because I was worried that with my current care in flux, it might cause more harm than good to know about more lesions on my spine.

The issue is that I don’t currently have a consultant. Mine left the hospital a couple of months ago and the other consultants are currently covering his patients on a weekly rotation. When I challenged the decision with my nurse, she advised that she would set up an appointment with the consultant who made the decision and offered to ask another of the consultants to reconsider. But with patients being reallocated, the last thing I wanted was to end up with a narrow minded consultant, which meeting with him would increase the chances of.

Given that there was no baseline to compare with, which means it would have no impact on treatment choice, and that my care is currently in the cracks, I felt that learning about a more severe prognosis without sufficient medical support wouldn’t do my mental health any good!

I do think, though, that the spine should be scanned routinely at the same time as the brain. There’s evidence of correlation between spinal atrophy and lesions on the spine and later progression outcomes. Given this, and that it’s 15 minutes more – I don’t see where the justification can be for not doing it?!

Shift MS – if you have any industry engagement coming up I’d be very grateful if this could be raised.

Thanks again @stumber, @dominics and @kimiblanc

1 month ago

@beefree Hi, you have had to do all the work here and find a conclusion for now that feels most manageable. It sounds as though you are finding a balance that minimises risk to your mental health, whilst leaving you frustrated with the system. Not easy territory! I hope you get a new consultant soon, and that your first appointment with them will give you the space to fully cover all your concerns.
I was recently referred to a new consultant, and felt frustrated to be passed on and to be stuck with more uncertainty and another waiting list. However……. once I got that appointment, it provided a great opportunity to revisit the whole story, hear another perspective and ask new questions. The new consultant is more collaborative and interested in my experience – it’s been a revelation! I hope you get the same opportunity, and keep building your list of questions in the meantime!

1 month ago

Thanks @d1zzy, for your kind message. It’s so hard to balance, isn’t it. I’m finding the system endlessly frustrating but trying to stop short of getting stressed out by it. I really hope the allocation of a new consultant is an opportunity to feel more empowered – fingers crossed! In the meantime, I have a fantastic MS nurse, which is something.

Thanks again.

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