Help! Multiple perforations/multiple revisions/recurrent left sided muscle twitching with palps

Ok so I will try to make this brief. Medtronic pacer placed in 2011 perforated within 24 hours. Lead revised. 2016 small voltage setting change lead perforated again. Leads and generator replaced. 2018 small voltage change again and again perforation. Entire device including leads replaced May 2018. After all this having multiple episodes of left chest twitching with associated palp causing nausea and left sided pain. At 11:53 every night strong chest twitching. I’m sure this is pacemaker self check.  The problem is if I laugh hard, move too much as in sweeping kitchen etc the palps become horrible. I only pace 3% and feel as though this device is just aggravating my heart. I have gone to Cleveland Clinic, U of Penn, Cornell. Every EP I have seen is baffled.  Some docs say I need pacer others say no. The pacer was originally placed after third ablation and episodes of I believe second degree heart block. But at the time was put on Propafenone and mds felt pacemaker best route because of this med. I am no longer on propafenone which was the whole reason pacer placed. Yet interestingly when my pacer is interrogated I have been to,d I went into some degree of heart block.  Trying to find an EP doc that has seen everything and can possibly figure this mess out.  Thanks for any help.  

also just a little history this all started with just two or three episodes a year of SVT s. 3 ablations later and 3 lead revisions/ replacements I am so very sick. To the point I am unable to perform my full time job as a nurse. Need an amazing EP who will spend time figuring this out. Maybe the doc at Cleveland wasn’t the right one. I know there are many. I live in NJ and willing to travel and do what it takes.  Thank you. 


1 Comments

finding the answer

by Tracey_E - 2019-02-15 10:03:39

 As you probably know, the best way to find an EP who's seen it all is at a large teaching/research hospital like Cleveland or Mayo, which you've already done. Mt Sinai or Presbyterian in NYC? Hopkins in Baltimore? 

Have they tried turning it off, or at least way down, to see if the symptoms are pacer induced or you? That's the best way to determine if you need it, see how you do without it for a few weeks. 

11:53 sure sounds like the self check. Would they turn it off?

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