Upgrade to an ICD

I have learned I have an LMNA pathogenic genetic variant, which can cause bradyarrhythmias (already have) dilated cardiomyopathy (already have cardiomyopathy) and sudden cardiac death. I recieved a CRT-P device 3 years ago that left me with subclavian vein stenosis. 

I presume  that if my EP suggests an upgrade to an ICD, that the new leads will have to be inserted via the other subclavian vein. Would she then put the ICD on the same side as my pacer, or would it have to be implanted on the same side the ICD leads are inserted on? 



by AgentX86 - 2022-03-16 11:40:05

That's not a good diagnosis but it's a very good thing they cought it now.  Apparently an ICD is recommended for any instances of this LMNA gene variant. Your CRT-P was presumably put in because of the cardiomyopathy.  That's still the issue with this genetic disorder but there is also a significant risk of sudden cardiac death.  An ICD will keep you safe.

There is a chance that the same leads can be used.  They may have to be moved but it is possible.  If new leads are needed, in your case I'd assume they'd move everything over to the right side.

Just wanted to wish you well

by Gemita - 2022-03-17 09:32:31


I am so sorry you are having to deal with this diagnosis but I know from your posts that you are coping more than bravely and keeping yourself fit and well to help with any symptoms you have now or may have in the future.  

I don’t know what can be done to relieve your subclavian vein stenosis, other than invasive treatments, although I suspect like me you have developed collateral veins around your current device to naturally help relieve some of your discomfort.

I have not had a change of device or leads, or needed any upgrades, so I do not know how they would go about overcoming the problem of congested veins or where and how they would place new leads and how they might link the systems “together” for a minimally invasive procedure?  I tried searching on how to deal with stenotic subclavian veins during upgrades and attach a few links which might be worth a read if you are interested.  A possible alternative to moving everything to the right side, I wonder?




In the meantime Julros, I send my best wishes to you and hope you stay safe and well

Thank you Gemita

by Julros - 2022-03-17 22:40:58

Thank you for your kind words, Gemita, and for the links. I have trust in my EP, and because she is associated with a large teaching hospital, and that I will have access to top experts, should the need arise to upgrade. 

And yes, I do have collateral veins visible on my chest wall and an arm that is slightly larger and slightly redder than the other. 

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