How to know if you should get a pacemaker?

Hi!  I'm new here and need some advice.

I'm nearly 80-years-old and have been having heart problems for the last few years.  Perhaps even longer, because I was diagnosed with chronic fatique syndrome 30 years ago, and now am beginning to suspect that I may have had undiagnosed heart damage going back as far as 1992.

I recently was referred to an electrophysiologist who told me that even though I don't meet the strict criteria for getting a pacemaker, he recommended that I get one because he thought it "might" improve my symptoms of fatigue and dizziness.  My PCP agrees that "it might help", but this seems like a big step to take based on vague speculations like that.

My PCP says getting a pacemaker is no big deal, that it's not a major surgery and is just a routine procedure these days.  I used to be very active, and back then my bicycle was my primary mode of transportation in hilly Seattle, year-round, rain or shine.  Now I only get out one or two times a week for short rides to run errands.  I would love to get back to my daily long bike rides.  But I'm worried that I might undergo a surgery that ends up providing no benerfit, and may even result in complications that further debilitate me.

I'd be grateful for some advice.

Will in Seattle a.k.a. "That Masked Man"

P.S. I got my nickname form the respirator mask I started wearing years ago to protect me from exhaust fumes while riding my bike in rush hour traffic.


14 Comments

That masked man

by AgentX86 - 2022-09-06 22:42:58

My neighbors call me "Forest" because I walk 10mi around the neighborhood every day (three or four times past everyone's house).

Should you get a pacemaker?  In your case it does sound like you have the option.  Can we say yes or no?  I don't think it would be fair but I can tell you that your doctors are right.  It's a trivial surgery. It's so trivial that some have the surgery at 8:00 and have lunch on the way home.

Of course, as with any surgery, things can go wrong.  They can with a tooth extraction too. 

The down side is pretty small and the possible upside for you is significant but certainly not a life or death issue. If my doctors recommended it, with the same choice as you, I'd think about it, like you are than go for it.  Again, the possible upside may change your life.

Yeah, it's not that bad.

by Julros - 2022-09-06 22:45:10

Hi Will. I get my cardiology care in Seattle, too, and I would strongly consider the advice of your two doctors. Pacemaker implantation is relatively simple and complications are rare. I think for most, it is a same day procedure. You need about 4 weeks to recover and then zoom off you go. 

Sometimes getting pacers  to respond to bicycling can take some fine tuning, but hey, gettting more seat time would be worth it, to me. 

Settings

by Swangirl - 2022-09-07 00:19:51

Sure, the implanting is fairly simple and the leads not too difficult, but it's having a skilled person who understands how to program the thing and make it do what you want that can be the problem.  My cardiologist who did the surgery didn't have much skill in adjusting the PM to allow me to be as active as I was.  Bike riding is particularly problematic as the rate response feature requires some upper body motion to activate.  

Need better explanation

by Rch - 2022-09-07 01:26:58

Hi, if you do not meet the strict criteria for a pacemaker and are very ambivalent about it, it might be worth getting a second opinion from another EP before embarking on it.  

How to know when a pacemaker is required?

by Gemita - 2022-09-07 05:31:40

If I am not mistaken I believe you have posted before but have removed these posts.  Your current post is difficult to answer because you clearly say “I’m nearly 80 yrs old and have been having heart problems for the last few years . . .” but you have given no indication of what your heart problems are/were or what you call “undiagnosed heart damage”.  Have you for example ever had any confirmed evidence of scarring of your heart muscle from a previous illness or perhaps from a heart attack, evidence of bradycardia (a slow heart rate) or any other electrical problems ?  

Chronic fatigue and dizziness can have so many causes, not necessarily due to heart problems.  I was diagnosed with Chronic Fatigue Syndrome years ago before my pacemaker was indicated for bradycardia/tachycardia syndrome and I can tell you that chronic fatigue is still unfortunately very much a part of my life although the pacemaker has successfully treated my bradycardia symptoms and largely helped with syncope.

Although Pacemaker implantation is a relatively straightforward procedure, there are always risks, especially in the elderly with other ongoing health conditions.  Yes I would agree that getting a pacemaker based on a comment like “it might help” would not be a strong enough indication for me or my doctors here in the UK to recommend implantation, so unless your doctors have seen evidence that you could benefit from a pacemaker, I would not be in a hurry to go down the pacemaker route.

How to know when a pacemaker is required?  Evidence of bradycardia, heart block, scarring, long pausing, syncope.  Evidence of a dangerously high heart rate which needs treating with a high dose rate control medication which could dangerously lower heart rate and cause syncope/bradycardia without pacemaker support and reasons like this, but there usually has to be an indication for a pacemaker 

does your heart rate drop?

by Tracey_E - 2022-09-07 10:19:48

You didn't mention what is going on with your heart. All a pacer can do is make your heart go faster. Is it too slow now? Does it go up when you exert? 

It's common for doctors to say maybe and might instead of something more definitive. It's called CYA. If they didn't think it would help, they wouldn't recommend it. There are no guarantees, but if your symptoms are caused by a low heart rate, or a rate that doesn't go up on exertion, then yes a pacer will absolutely help. 

If you decide to get it, make sure they know you cycle. It will affect which one they give you. You do not want a Medtronic or St Jude/Abbot. 

Whats up with St Jude or Medtronic

by FG - 2022-09-07 12:15:44

I thought it was kinda like the BMW vs. Mercedes vs. Lexus question...

StJude or Medtronic

by AgentX86 - 2022-09-07 12:47:25

Boston Scientific has a "minute ventilation" rate response system that attempts (now always successfully) to measure breathing rate and volume to determine heart rate.  StJude and Medtronic rely on an accelerometer for rate response.  The accelerometer is OK for walking or running, where the chest is moving and it can sense foot-falls but isn't so great when riding a bicycle or swimming where it's not so easy to detect motion, so the heart rate doesn't increase.

This difference is only important if rate response is needed. If the person is chronotropically competent, rate response isn't needed so all of this is moot.

 

FG

by Tracey_E - 2022-09-07 13:17:30

For most patients, it IS just like that- all are fantastic and any will do the job. For sick sinus patients who cycle or swim, they will do better with a device that doesn't have an accelerometer (depends on motion to work). Medtronic and Abbot only make accelerometer based rate response. 

‘Nuf said

by Lavender - 2022-09-07 15:59:24

I quote you:

"I recently was referred to an electrophysiologist who told me that even though I don't meet the strict criteria for getting a pacemaker, he recommended that I get one"


I repeat: an electrophysiologist recommended!

'nuf said 

How to know if you should get a pacemaker?

by That Masked Man - 2022-09-07 17:42:10

Many thanks to all of you who have responded to my query.  I'm impressed by the depth and range of your knowldege and by your willingness to help me make this difficult decision.  I feel llke I've definitely come the the right place for some guidance.

I have to confess that the language the cardiologists I've consulted have used to describe my problem is mostly incomprehensible to me.  And they become impatient with me when I ask them to explain things to me in non-technical terminology.

This morning I looked through the sheafs of printouts I've received from the differenet doctors I've consulted in the last decade or so, and here's what I've found:

*  Marked sinus bradycardia

*  Right bundle branch block

*  Left anterior fasicular block

 *  Entire left ventricular inferior wall is hypokinetic at rest and with exercise  

And from my own pulse monitoring at home: 

Recent onset of trigeminal pulse and just lately, episodes of wildly erratic pulse with no apparent pattern at all.

To further confuse me, I recently saw my PCP for my annual check-up during which I brought up the question of getting a pacemaker implanted and told him that the electrocardiologist I had recently seen had told me that I don't meet the criteria for one but he still would recommend it.  My PCP looked upt the electrocardiologists report and found that he had written that I DID meet the criteria for a pacemaker implant.  But I distinctly recall him telling me that didn't, and that he could only go so far as to say that it "might help."

In the meantime, the general cardiologist I've been seeing for the last few years has retired I've been putting off medical office visits due to the covid pandemic so I haven't gotten around to find someone to replace him.  I've kept waiting for the pancemic to be over.

Covid

by Lavender - 2022-09-07 17:53:42

I've been hospitalized for various things during covid. I've never had covid yet.  I wouldn't wait for the pandemic to be over-it's going to stick around. I got my pacemaker February 2021. Yes there were more covid protocols, but medical care went on. 

Get a cardiologist. You might have to wait a bit to be seen. Establish a relationship and you'll be ready when you get a pacemaker!

If you liked the EP you saw, see who they recommend or ask your pcp for a referral. Your retired cardiologist's office probably referred their patients to someone. 

Indications for Pacemaker

by Marybird - 2022-09-07 18:06:40

I'd have to agree with what Rch and Gemita said. Pacemakers will improve chronic fatigue and dizziness IF these are due to bradycardia/ pauses, but not if these symptoms are due to other physiological causes. And the criteria for needing a pacemaker is based on documented bradycardia at the time of the symptoms, to show that the bradycardia is the cause of those symptoms. Perhaps you have documentation in your records showing significant bradycardia and/ or seconds long pauses between heartbeats, correlated or not with episodes of dizziness or fatigue, otherwise it surprises me that an EP would recommend a pacemaker, especially if the recommendation comes with a rather fuzzy caveat, ie, "it might help". I don't think I'd sign up for pacemaker surgery unless the EP can specifically tell you what in your medical records shows you would benefit from a pacemaker, a little more specifically than it "might help". Otherwise, you could end up with a surgery andan implanted device you don't need, and still have issues with fatigue and dizziness. As others have said (and in my own experience), pacemaker surgery is simple, and recovery isn't hard ( depends on the person, of course). Though you don't want to go through unneeded surgery without assurances that it will improve things for you.

The other issue that has not been mentioned is that unless a patient meets at least one of the listed criteria ( recommendations from the American Heart Association, Heart Rhythm Society, and European Society for Cardiology guidelines) for pacemaker/ICD placement, Medicare ( as well as other insurances) will not pay for the surgery or the device. That is something for sure to discuss with the EP who suggested the pacemaker for you. 

 

 

 

How to know if you should get a pacemaker?

by That Masked Man - 2022-09-07 18:34:21

Thanks, Marybird, for that heads up re: insurance coverage.  I'm on Medicare and scraping by on Social Security, so I'd have to be assured of coverage before going ahead with the surgery.

Just now I found the notes from my office visit with the electrophysiologist.  It turns out the notes were stored on a differenct server from the one my PCP uses, so today is the first time I'd everI seen them.  He wrote that "the patient," meaning me, "almost assuredly exhibits sinus node dysfunction and chronotropic incompetence as the etiology of his symptoms. With that said, his monitor did not discernibly worsen since the last check. I do feel though he meets criteria for implantation of a rate adaptive pacemaker. Interestingly, the bifascicular block has not shown any progression with high-grade AV block. He would like to talk to his upcoming new geriatrician about what this individual thinks may be helpful. This is reasonable. Should he ever wish to proceed with a pacemaker, he will let me know. He seems motivated to feel better but does not necessarily seem convinced this is the right course of action."

So, his recommendation still seems to be a qualified one, even though he does come down on the side of going ahead with a pacemaker implant.

I'm going to take your and Lavender's advice and find a new cardiologist so I can get a second opinion.  (I also need to get an appointment for cataract surgery, too.  My cataracts have gotten so bad I can no longer drive or bike ride at night.  And up here in Seattle in the middle of winter it gets dark at four in the afternoon).

Will in Seattle a.k.a. That Masked Man

You know you're wired when...

You participate in the Pacer Olympics.

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