Hospital with the best reputation for treating sick sinus bradycardia

I often say that I have seen the best heart doctor in my city, which doesn't mean I have seen the best heart doctor.  I have a PM because after much testing for the reason it felt like an elephant was sitting on my chest during any kind of exertion it was discovered that my pulse was not keeping up with me.  Electrical malfunction was how it was explained. Or sick sinus bradycardia.  I will admit it is better now.  However, after many adjustments I still can't perform in the manor that I was able before and it is so frustrating.  Is there a hospital or doctor in America that specalizes in this particiular function of the heart?  If I just have to "live" with it I will accept that after I have tried all avenues.


Sick Sinus Syndrome

by AgentX86 - 2023-03-28 17:38:38

SSS is one of the most common electrical diseases of the heart.  There really isn't any magic to the treatment of it.  A pacemaker is about all that can be done.  However, setting up that pacemaker for your lifestyle can be problematic.  If your lifestyle includes swimming, you could be out of luck.  If it's cycling, it's difficult but there may be help.  Anything else should be relatively easy for the pacemaker to adjust to meet the challenge. You can try to find a sports cardiologist but it may turn into a "try this", "try that" process.

The right PM makes a lot of difference

by crustyg - 2023-03-28 18:12:41

I too have SSS+CI: running - easy, any PM can support that.  Road cycling - the right PM, correctly tuned will enable you to cycle up mountains.  A young guy (mid 40s) who has joined our group was most annoyed that he still can't keep up with me on the slopes, even giving him 20years and a PM, but other colleagues overtake me just to keep my head at the correct size.

Swimming is a real challenge.  Not a lot of upper body movement and good swimming is all about breath management, so a PM needs careful tuning for this.  I swim arms only with a pullbuoy but I'm not fast.  Any form of exercise using large muscles in a stationary position can be difficult (e.g. sustained squats) but you can cope to some extent.

Mental attitude and believing that you can do it again may be a factor?

Fine tuning

by piglet22 - 2023-03-29 09:44:22

Yes tweaking the settings but I'm finding after 18-years it's the medication that needs tweaking too.

Atenolol out Bisoprolol in. Just need to get the dose right now.

Not 100% certain it's either of those, but time will tell.

So frustrating

by HIT&RUN - 2023-03-29 22:54:22

So basically you guys think it doen't take a specialist because this is pretty common.  Just keep tweaking?  We have been doing that to different settings for almost two years now.  Try this for 3 months...try this for three months...etc.  It gets a little tiring and frustrating.  It haven't stopped me from any of my sports except for swimming or exercising but can't do any of those things to the pace and level I use to.  Is this just my new normal that I must accept?

Not much of an answer

by Gotrhythm - 2023-04-02 15:57:15

Though I am deeply sympathetic, I have held off commenting in the hopes that someone else had a better answer than I do. But no. So here goes.

It's true that SSS is common and can be treated with a pacemaker basically anywhere. But I don't think that's what you're asking. You want to know how to get better support from your pacemaker. Something that allows you to function more nearly like what you used to be able to.

And you wonder if that is even a reasonable aspiration.

You mentioned in an earlier post that you had not been able to return to tennis. Well, if playing tennis means a lot to you, I think it is.

Here's what I can tell you. There is no such thing as the "right" pacemaker settings for SSS. There are only the pacemaker settings that are right for you.

When it comes to dialing in the right settings, a skillful pacemaker tech knows as much and often more than the average EP.  Going to a "better" doctor will only help if that doctor has better techs. 

Since what you're looking for is better technical competence, the realities of life in the US means that you're more likely to find it at a large teaching hospital. Do be aware though, that even there, making settings optimal is still matter of guesswork.  I've been back three times now, getting the settings on my second pacemaker tweaked. It just isn't a matter of right and wrong, Only what helps, doesn't help.

About returing to one's former level. The sad fact is that SSS is most common in older people. And there comes a point in life when time is not on our side. Pacemaker or not, nothing is going to make us able to run as fast, jump as high, last as long, as we once could. 

How much diminished capacity to accept is a philosophical question only you can answer. For myself, I'm not willing to accept getting less from my pacemaker that an optimally tuned pacemaker will give me. But I do accept that having an optimally tuned pacemaker is, and will continue to be, a constantly moving target because my own condition is always changing. 



by HIT&RUN - 2023-04-04 22:32:34

Although what you say is, of course, not what I wanted to hear, thank you for saying it.  I do really appreciate your insightfulness.  Coming from someone who is in the trenches means a great deal more to me.  My Doctor may understand the workings of the pacemaker but he doesn't understand how it makes me feel.  The same can be said of the Tech.

The way you have said it makes a great deal of sense.  Perhaps my Doctor has been saying the same thing and I am just not listening or understanding. The right setting for me. I just really hope there is one!

I am a very positvie person and won't let this stop me from doing those things I want to.  Tennis is hard and frustrating because I can't play at the level I could.  I have stopped spinning classes, swimming and walking three miles with my dog.  However, I do still walk with my dog just slower and not as far.  I can still do yoga.  Pickleball has become my new pastime.  Learning something new always helps the spirit.

One thing you said that concerns me.  Your condition is always changing.  I hadn't realized this was to be the case.  I suppose I thought that once they got it down I would go about my life as usual.  I even joke that I can live forever now, all I have to do is change the battery.  Once again I wonder if they are not telling me this stuff or if I am not listening.

Right settings

by Gotrhythm - 2023-04-08 17:44:57

Having had no real training in pacemakers, I can only share my experience about settings.

I became really comfortable with my activity level when my RR (response rate) was set on the maximum with maximum sensitivity, and my base rate at 70 BPM.

With the RR set so high, my HR could jump into the high 80s when I reached for a Kleenex, but it meant I could go from a standstill into a fast jitterbug without missing a beat (literally.) Though I wouldn't call myself athletic, I have always been a high energy person, and when I move, I like to move fast. No surprise that ballroom dance is my "sport."

I never had to deal with maximum heart rate issues (120 and above)because my heart rate is limited by factors other than the pacemaker, but those in good condition often have to negotiate with their EPs to get their maximum HR raised to levels that allow them to function at high levels.

I say all this, not because I reccomend anything, but to give you an idea of some parameters that need to be looked at if you have a goal of functioning at the highest level possible for you.

As to why doctors don't discuss these things with us...About our condition always changing? If you think about it, that's one of those things that everybody knows, too obvious to say really. You don't have the same skin, hair, eyes, joints at 60 that you had at 40, or 20. The same is true of your heart--it's always changing with the years too. You're just not used to thinking about it.

Doctors don't like to say that aging is the "cause" of anything. But that's what SSS really is. Wear and tear that has accumulated on your heart. The average age for SSS diagnosis is 68.

How fast the changes will accumulate varies hugely from person to person.  Sometimes, they are so gradual and slight they are practically unnoticeable for years. Sometimes they seem sudden. Who knows how it will be for you? It's just not worth worrying about. And there's really nothing for the doctor to tell you or warn you about.

Pacemakers for those of us with SSS are totally about quality of life. With a pacemaker with optimal settings you can have the best quality of life your overall health can support. I think we have the right to insist, and insist, and insist that our pacemakers aid us in living fully.

You know you're wired when...

You have an excuse for being a couch potato.

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It made a HUGE difference in my life. Once I got it, I was finally able to run, and ride my bike long distances.