Just venting

So, I have (apparently) an MRI-conditional lead. And an MRI-conditional pacemaker, following an AV node ablation (for longstanding persisten atrial fibrillation).  However the combination is not MRI-conditional (according to Boston Scientific and my current EP/cardiologist) so I can't have an MRI. (As an aside: What????)

Which matters, because I have heart failure (HFpEF) and my cardiologist thought to order a set of blood tests so obscure the vampires at the hospital had never come across them before. This was, of course, just in case to eliminate various unlikely scenarios, before we went down the road of managing the heart failure.... and investigating the possibility of a heart transplant.

And lo and behold, one of the unlikely scenarios is looking probable (400 people a year diagnosed with it in the UK). So I have a batch of other tests scheduled including a bone marrow biopsy and a three day appointment at the only UK centre specialising in this thing for them to poke and prod and scan (2 different CT scans with different chemical markers pus the usual ultrasounds, ECG, 6 minute walk test).  And they'd dearly love to do an MRI of the heart to measure how badly it's affected, but of course they can't.

Which means that, if they diagnose this thing, they can't optimise the treatment (chemotherapy -- repeated as necessary for the rest of my life) to address any involvement of the heart. Not treating it is not an option (6-12 month prognosis).

Maybe I'll be lucky and they'll give me the all clear from this thing, in which case I'm already scheduled for a heart transplant assessment...

I get all the fun diagnoses!


3 Comments

ATIRAS

by IAN MC - 2020-03-04 08:29:46

My experience may or may not be relevant :-

i ) I also live in the UK  ( all of the rain is fun isn't it ! )

ii)  I had an MRI scan yesterday so it is still fairly fresh in my mind.

I have a Medtronic PM . When it was implanted 9 years ago , written on the pacemaker ID card in bold biro letters was the warning " NOT MRI SAFE "

9 yrs on I really needed an MRI scan and was quite apprehensive when I was wheeled into the MRI cylinder yesterday. The senior cardiac physiologist ( alias technician ) was there before I was scanned and could not understand the warning message. He telephoned Medtronic  and they made reassuring noises.

He put my PM into safe mode and was there throughout the procedure.  I had read on the PM club dire warnings that you can fry from the inside if you have an MRI with a non-safe device but I HAD ABSOLUTELY NO PROBLEMS.

My understanding is that , as far as MRI's go , the medical profession were ultra-cautious with anyone who had a PM but with the passage of time it has been realised that potential problems were over-stated

I know that we can safely have CT scans but in certain situations , MRI gives far more information.  It may be worthwhile talking to them again.

Best of luck

Ian

Thanks Ian

by atiras - 2020-03-04 08:50:09

That's reassuring. I'm boggled that in 2018 the relevant hospital managed to implant a combination that isn't reputedly MRI-compatibre. Also that they swore blind that it was (EP and device technicians).  But after they dumped me ('Sorry, you have heart failure, which EPs can't help with, bye') my new consultant still thinks an MRI isn't possible (and he seems to be pretty clued up: https://bjcardio.co.uk/2018/10/current-and-future-perspectives-on-cardiac-pacing/) so I suspect the problen is the AV node ablation.

 

And yes, I love getting wet -- and not being able to drive through the village because the drainage system is overloaded again.

My radiographer says...

by atiras - 2020-03-08 08:28:31

I just had a good conversation with a senior radiographer (who was doing a high contrast CT scan of chest and lungs).  He said he'd be happy to do an MRI 'as long as the hospital where they put in the pacemaker and lead didn't so something stupid and put in a mismatched set'.

You know you're wired when...

You have the perfect reason to show off your chest.

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