second opinion on unexplained bradycardia after pacemaker implant?
September 15, 2019 8:40 AM   Subscribe

Shortly my wife received a pacemaker, her bedside ECG reported a lower heart rate than the pacemaker was supposed to maintain. We both saw it, and the nurses charted it. Weirdly, the electrophysiology fellow insists that this never happened. And he's so hard to talk to that even if there is a perfectly reasonable explanation it's clear I'm not going to get it from him. How would I request to have another physician explain this to me?

Here's how it happened:

A few minutes after she was brought back to the post-procedure room, my wife reported dizziness and nausea. We saw on the bedside ECG that her heart rate was in the 40s. We talked for at least a minute about how she felt, whether I should call someone, whether there'd be an alarm if something were really wrong.

Then my wife stopped talking back to me. I saw at this point that the bedside ECG said 39 bpm. I got a nurse, who got about five other people including the electrophysiology fellow. I got kicked out of the room at this point.

Afterward, the electrophysiology fellow brought me back into the room, explaining that he had checked everything (he listed at least an ECG, a chest X-ray, and an interrogation of the pacemaker) and everything was fine.

I asked at what bpm the pacemaker was supposed to start pacing her. He said 50 bpm. I asked why we had observed her heart rate as low as 39 bpm. To my surprise, he said that it never had. Which is not prima facie implausible, but demands some reconciliation with my wife and I both saw on the bedside ECG and with the heart rate charted by the nurses at the time.

Here's what we've already tried:

Whenever we asked him directly, he only insisted that he has no record that her heart rate ever went below 50 bpm, that he has checked everything, and that she is fine now.

Eventually we started bringing this up with everyone: the nurses, the anesthesiologist, and the nurse practitioner. The nurse practitioner eventually relayed back to me the fellow's speculation that my wife could have experienced either "a pause in conduction" or "premature atrial contraction." He wrote these down for me to make sure I got the terms right. When I asked for further explanation he demurred, reasonably enough saying that he wasn't a cardiologist, and he was only relaying to me the cardiologist's words.

We asked a nurse if we could speak with the attending, but she refused, saying she could only page the electrophysiologist on call, which would be the same fellow who'd been not answering the question for the last day.

We're trying to distinguish between two hypotheses:

One possibility is that the bedside ECG misreported her heart rate, and whether on its own or with pacing her heart rate remained above 50 bpm. In which case I can be assured that she will recover from future episodes of bradycardia and we might consider adjusting the pacemaker so that she can remain conscious during future episodes.

Another possibility is that the bedside ECG was accurate, the pacemaker is not working, and she recovered entirely on her own. This would be typical: my wife goes months between episodes and so far has always recovered on her own with only the usual postsyncopal fatigue.

Why I want a different physician to answer my questions:

I would like a conversation with a different physician who could review whatever records the hospital has and allay our concerns. Or fix them, as the case may be, but I'm actually pretty optimistic that if I could just get 15 minutes with someone who had the relevant knowledge and could access my wife's chart and was better at explaining things to patients we could all get on with our lives.

But, good God, this fellow is not that person.

We learned to ask him what he had come to do, as he would otherwise enter the room and set up for the procedure in silence.

When he removed my wife's stitches, he did not narrate his actions, except when my wife started writhing in pain and he said, "Relax, I'm not even doing anything yet." She reported the process was much more unpleasant because the pain came at unexpected intervals and even when she wasn't in pain she was anticipating pain.

We also had this conversation over the telephone, which I will quote not because it's important enough to justify that much space but because it simply defies description:

Me: Okay, so the number I should call is 1-800---
Him: (silence)
Me: Sorry, hello?
Him: Yes?
Me: Okay, so it's 1-800---
Him: (silence)
Me: Um, can you confirm 1-800?
Him: Yes.
Me: Okay, 123...
Him: (silence)
Me: Can you confirm the next three digits are 123?
Him: Yes. (rapidly) It's 1-800-123-4567 extension 12345
Me: Sorry, the reason I want to read the number back to you is, English is not my native language, and if I'm systematically misinterpreting one of your digits, I'll do that every time you say it. But if I read it back to you, hopefully you won't make exactly the complementary mistake and then we'll catch it. Does that make sense?
Him: Fine.
Me: So, 1-800---
Him: (silence)
Me: Can you confirm 1-800?
Him: Yes.
Me: 123---
Him: (silence)
Me: Can you confirm 123?
Him: Yes.
Me: And the last four are 4567?
Him: Yes.
Me: And the extension is 12345?
Him: Yes.
My wife thinks he's just an asshole. I have no idea what's wrong with him (seems less voluntary than that) but I'm also eager to talk to someone else. How do I do that?
posted by meaty shoe puppet to Health & Fitness (12 answers total) 1 user marked this as a favorite
I cannot advise you how to talk to someone else, but I can confirm he is an asshole.
posted by AugustWest at 8:46 AM on September 15, 2019 [9 favorites]

I was able to get an appointment to meet with another doctor by simply telling that department that I did not find the physician I had met with and who I was scheduled to meet with again to be a good communicator. They hooked me up with a different doc. Different hospital, neurology rather than cardiology, but I would hope that you might have a similar outcome by talking to cardiology. Call them up.
posted by Hobgoblin at 9:13 AM on September 15, 2019

Ask for a second opinion if you want to talk to someone else I suppose.

Here is what I would say as a nurse who works in cardiology. Take my advice with grain of salt, I am not a physician and I am not giving medical advice and only advising on what I know and have seen --- is she pacing appropriately now? Is she living her life and feeling okay? Do not worry. Believe the EPS doctor when he has no record of the HR going lower than 50, it could have been an error on the monitor --this happens.

If indeed her HR was 39, how long did it last and when you say she stopped speaking how long did that last? Did she lose consciousness or was she near-fainting? Did the pacemaker eventually start pacing? Do you know what pacing looks like on the monitor? Did the nurses tell you that she was pacing in post-op at all? You did not say. Do you think the pacemaker is working or do you not know? If it's working, move on and ask any questions at your follow-up appointment.

It is normal to have some pain and tenderness at pacemaker site. If your wife is fine and living her life and feeling okay and not faint or dizzy, do not worry and trust that the pacemaker is working. I wouldn't worry one bit but that's easy for me to say. I know it can be scary when the heart is involved but if you have confirmation that the pacemaker is working and your wife is feeling fine, you can move on now.
posted by loveandhappiness at 9:45 AM on September 15, 2019 [3 favorites]

Your hospital may have an ombudsman or patient advocate who may be able to help.

I'm 3 1/2 weeks out from a placemaker implant. I completely understand the anxiety caused by this sort of unexplained event. From a distance, I can think of various explanations from digital boxes not communicating properly to erroneous readings due to a heart arrhythmia. It might even be that the pacemaker settings needed to be changed and the electrophysiologist didn't want to admit it. It seems likely that, in the end, you are going to have to accept that you'll never know exactly what happened.

My own cardiologists seem to be very forward-looking, "we can fix that" guys, not much interested in something in the past that they can't explain and can't reproduce. They will be able to tell if the implant is working properly, and that's the important thing.
posted by SemiSalt at 9:53 AM on September 15, 2019

I suspect he initially miss-programmed the pacemaker, but corrected his mistake when he interrogated it after your wife's Brady episode. If any other type of arrhythmia caused your wife's episode, the pacemaker would likely have recorded it.

I wouldn't want to be treated by someone who would deny making a simple mistake like that.
posted by monotreme at 10:20 AM on September 15, 2019 [2 favorites]

Everybody has a boss, except independently practicing physicians in the US who have basically no oversight. However this guy is a fellow so he does have a boss. I'd insist nice on meeting with that person and laying out your concerns and asking for an independent review.

I've done this before and you'll get a lot of push back but ultimately it'll get reviewed and you'll get some answers.

I only go to US doctors now who are part of a larger organization where I have some more rights as a consumer and patient. I won't see independent physicians because of bs like this. Say what you want about Kaiser and HMOs, there is a lot to be said for professional managers running a clinic.
posted by fshgrl at 12:50 PM on September 15, 2019 [1 favorite]

Response by poster: I hadn't even considered the possibility that all he was covering up was a misconfiguration. I thought they'd been pretty explicit going in that it might take a few tries to find a good configuration; hence the follow-up visits.

Is there any way for us to credibly indicate that if that were what happened, we'd drop it immediately? Because as far as I'm concerned, that's a perfectly reasonable story that both explains the episode in the post-procedure room and plausibly leads to her not randomly fainting in the future.
posted by meaty shoe puppet at 5:22 PM on September 15, 2019

There might be records in the pacemaker, but you would have to find an electrocardiologist who you trust to do the interrogation and interpret the data. I think you would be better off simply finding an electrocardiologist you trust and transferring care to their office.
posted by monotreme at 5:56 PM on September 15, 2019

While you can do as monotreme suggests I'd let the hospital know, in writing, why. Doctors really need more oversight
posted by fshgrl at 9:32 PM on September 15, 2019

Monotreme brings up a good /interesting point. Who owns or has access to the data from your pacemaker? Does the patient?
posted by AugustWest at 10:47 PM on September 15, 2019

i have a pacemaker/icd.

i think you need to let this incident go and find a new EP/device clinic, because you clearly don't like the one you have. go with your wife to appointments if you want and she is comfortable with that.

at the first new patient visit at the device clinic when they interrogate the device they can tell you what she is set to pace at and what she is set to shock at (if she also has an icd). at this appointment you can also ask many of your questions, which they may or may not be able to answer because they'll just be techs, not EPs. but then you can also have a follow up visit with the new EP. ask the scheduler to make them for the same day if at all possible to save yourselves a trip.

if your wife is okay now, and being paced appropriately, stop worrying about this weird anomaly that happened shortly after surgery when she had just been implanted. it does often take some futzing after to get the settings just right.
posted by misanthropicsarah at 7:56 AM on September 16, 2019 [1 favorite]

Response by poster: To reiterate: we went in expecting that it'd take a few tries for them to figure out what settings work for her, and we'd be totally satisfied if the story were, "Yeah, the first thing we tried didn't work, so we tweaked it a bit, call us if you faint again." That's not what the EP is saying. He flatly denies that anything happened that morning.
posted by meaty shoe puppet at 4:17 PM on September 16, 2019

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