Pacemaker issues

Met with my EP today and he says we should just shut my pacing off. He disregarded all my questions about fluttering (pvc) and pulsating feeling. Says everything looks good on my device check. I really don’t know what to do. I had the problem in the beginning with my diaphragm and he made adjustments that modified  it, now it’s back but he wouldn’t change anything. I feel like something is wrong. Should I get another opinion? Or just turn it off and assume something else is wrong with my heart. I did not have these symptoms before the pacemaker. I’m so confused. He says we should just shut my pacing off. He disregarded all my questions about fluttering (pvc) and pulsating feeling. Says everything looks good on my device readings and he sees nothing wrong.  I really don’t know what to do. I see what he is saying about turning it off, but I've done that before and yes it resolved the issues but I still was not getting any benefits from the pm. I had the problem in the beginning with my diaphragm and he made adjustments that elevated it but now it’s back but he wouldn’t change anything. I've read so many posts where people had leads move and cause problems. I feel like something is wrong. Should I get another opinion? Or just turn it off and assume something else is wrong with my heart. I did not have these symptoms before the pacemaker. I’m so confused.

7 Comments

Turn it off?

by AgentX86 - 2022-02-10 16:24:00

If he turns it off isn't he admitting to malpracise? Either he implanted a PM that wasn't needed or is turning off one that is.  Either way...

I'd certainly drop him like, yesterday.  Find someone who will at least listen to you and answer questions.  One who will get to the bottom of the problem. Any EP should be able to figure out a simple pacing problem like this.  It sounds like he just doesn't want to bother.vAny doctor who won't help should be reported to the licensing aurhorities. And doctor who wants to turn off a PM without stating a damed good reason, likewise. It's close to lawyer time.

Pm issues

by JillG - 2022-02-10 17:53:14

He says that it's not working for me. He also claims my issues are rare, but almost every person on here have or has had an issue with there pm. I'm so upset! . Not sure my cardiologist will refer me to see someone outside of the hospital group he is associated with. Do I even need a referral for an EP? 

second opinion

by Tracey_E - 2022-02-12 11:56:26

Don't ask your current doctor for the name of someone for a second opinion, find someone on your own or through your primary that's in another network. You should not need a referral but sometimes insurance won't pay for it so we have to pay it out of pocket. That can be worth it for peace of mind and straight answers. 

Did they turn the whole thing off or just the lead that's causing the diaphragm stimulation? There's only so much they can do with programming if it's stimulating the diaphragm. If that happens, the choices are live with it, turn the lead off, or move the lead. If you don't use that lead, it would make sense to turn it off. 

Pm issue response

by JillG - 2022-02-13 15:40:27

Thank you for the information. I have a list of Ep's I'm going to check out on Monday. I think a second opinion would give me peace. They turned all the leads off. Apparently, the lv lead is the problem and it's also what I need the most. 

LBB and cardiomopathy

by AgentX86 - 2022-02-13 16:26:08

They've implanted a CRT-D for a reason.  Yes, the RV lead is important but it's the LV lead is supposed to correct the cardiomyopathy.  It's kinda important too.  The -D part is an insurance policy because of the HF.

Yes, find another EP, one who will discuss the nature of the problem and give you solutions (and the consequences of).  It is your call, not your doctor's and you can't make the descision without information and it's his responsibilty to give you that information.  "Informed consent" is a real thing.  Your body, your descision.

Pm issue response.

by JillG - 2022-02-13 17:33:35

Agreed! I definitely feel gaslighted by the Ep.   The more I think about it, the more infuriating it is. He's gaslighting me. Over the last three months it's come to the point where I don't even want to address anything to him or his PA because they never address it and just say "we can turn it off". I honestly think that's what he wants. He's not advocating for me at all. Time to move on. He may be completely right,  but I deserve someone to at least adjust settings or address some of my issues and then determine that's the best decision. 

"He disregarded all my questions..."

by AgentX86 - 2022-02-13 18:34:57

That, alone, is enough to tell you to move on.

You know you're wired when...

You fondly named your implanted buddy.

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I, too, am feeling tons better since my implant.