Help

[Hummby]

My husband is 52, no symptoms of heart issues. Had a VNS fitted for his epilepsy. (Which he's had since age 4) It was useless. He had heart block on the operating table after the VNS was implanted. That was brought under control and he was released 1 week later. Had an angiogram and told he had a heart of a 20yr old and 'text book' heart. VNS was activated 12mths later. Caused lots of pain and problems. 12mths after that he had the VNS removed as he needed to have a pacemaker fitted as he had cardiomyopathy. Still no symptoms. Now he's seen pre op assessment nurse. And due to have pacemaker in 2 weeks. He's on ivabradine and been prescribed spiro? A diuretic. To say I am in shock and scared is an understatement. Did the VNS cause this? They are not saying. Some reassurance from someone would help.

[Hidden]

Neurology guidelines are the leakiest of all.

They probably haven't got much clue of anything themselves.

That is said, after being seen at the top "Neurology establishments".

Many Neurologists are zombie drs which are only staring at the screens and reading up on the latest on legal news. There are decent ones, I had seen. But a department like Epilepsy is probably one of the worst.

There are good drs but their hands are tied most of the time. Some are honest and if your Neurologist doesn't know, then you need to be seen by someone else.

[Fortepiano in reply to Hidden]

I have to say I don't consider this a helpful ( or accurate!) reply. These sort of generalisations are ridiculous.

[Qualipop]

Not surprisd you are worried. What's a VNS? Vagus nerve stimulator? Sorry I can't help but I would suggest you try PALS to get an explanation of what's happened. It certainly does sound as if the implant has caused problems. Have you had a second opinion?

[Fortepiano]

I don't know anything about VNS but what a shame his didn't work. My husband had a cardiomyopathy and I spent a lot of time at first trying to pinpoint when and why it happened and if it could have been avoided- but there are so many causes, and it's often a matter of a predisposing ( and often genetic ) weakness meeting a triggering factor ( of which there are also many).

Obviously this isn't something that a VNS generally does. I am sure you want answers but often nobody can say more than maybe, if at all.

I know it's hard , but I found it best to accept the situation and concentrate on the treatment and the future - and there is a huge amount of help available for cardiomyopathy. That said I would want to make sure it was documented in case a pattern does emerge of other cases.

Interestingly there have been trials of VNS to help heart failure, though it hasn't proved very useful so far.

All the best