Decision time on getting a PM

Hi Everyone,

I'm new here, and recently have been diagnosed with neurocardiogenic syncope. I'm in my mid-30's and had a tilt table test done recently. I passed out around 13 minutes and flatlined for 10 seconds. My cardiologist is recommending I get a pacemaker very soon.

I have no history of fainting. I have been getting a slight dizzy feeling the past month or so, but never have come close to passing out. I'm going to see an EP soon, and just want to get a second opinion.

I'd rather not get a pacemaker, but I understand the reasoning and insurance it provides me. I'm a bit concerned about the recovery time and the aggravation it might cause. I'm a big stomach and slide sleeper as well.

I'm just looking for any advice or questions you may ask the EP if in my situation. Since I've never passed out, other than in the tilt table, I'm a little hesitant. Once some time has passed after the procedure, do you even notice your PM when sleeping or doing other activities?

Thanks for the input.
Mike

10 Comments

passing out

by Tracey_E - 2014-09-16 09:09:16

You had symptoms bad enough to warrant testing, yes? The cause of your symptoms is your heart stopping. A few seconds is ok, 10 is not. Passing out isn't part of the equation. It's good you aren't passing out yet, that means you've been diagnosed before you hurt yourself. Unless you happen to have crystal ball and know when it will happen so you can make sure you're not near stairs or driving, the time to get it is before you start passing out.

I do not notice my pm at all anymore. I sleep on my side. I am very active, hike with a heavy pack, kayak every chance I get, do Crossfit which includes weights. My current obsession is doing an unassisted pull up. Most of the time I forget it's there. It doesn't get in my way or slow me down.

Ask them to put it a little lower and deeper than usual, this will make it less likely to stick out and be less in the way when you are active.

Ask if your bp dropped before you flatlined. NCS can be a combination of heart pauses and bp drops. The pm will only fix the heart part. Meds and diet can help if bp is part of the problem.

Sleeping

by Marie12 - 2014-09-16 10:09:06

All what TraceyE said and just to add that I have an ICD and sleep on my stomach all the time. When she says lower and deeper, I think she might mean a sub pec implant. It goes under the muscle rather than just under the skin. I really wish I had gone that route and will the next time when they replace my ICD. Talk to your EP about it. All the best.

Reply

by mike77 - 2014-09-16 10:09:12

Thanks for the additional input and follow up questions. All good stuff.

I'll ask the doctor this as well, but curious what you all think. Outside of some cosmetic differences, is there really much difference between under skin and under pectoral? Seems like you guys have some opinions. I do like to golf and jog and the less I feel it, the better.

reply

by mike77 - 2014-09-16 10:09:47

Thanks for the input. Much appreciated. Glad to hear you rarely notice yours.

Yes, my BP dropped before I passed out. Im not sure to what degree, but I want to follow up on that part as well.

I also noticed my pulse goes up about 30-35 bpm (60bpm up to 90-95) when standing. That seems odd to me, but I know it not completely uncommon. Is that related?

What you say lower and deeper, is that still below the skin, but above the muscle?

Thanks!

placement

by Tracey_E - 2014-09-16 10:09:48

Discuss it with your surgeon. The normal placement is just under the skin, just under the collarbone. This is the easiest with the fastest recovery so many drs do it automatically. You want it lower than that. How deep depends on your build, sometimes they can get it out of the way without doing subpectoral.Recovery is a little longer when it's buried, but imo it's well worth a week or two of soreness to have it out of the way.

It's normal for bp and pulse to change when changing position, but you have NCS which means you are not changing normally. So I'm going to guess that yes, it's related.

Another question for the EP- if the bp drop came before the flatline and caused the flatline, ask if treating bp with medication is an option. It probably isn't because that is an awful long pause, but it can't hurt to ask.

Have you had a holter monitor yet? It will tell you how often and how long your heart pauses. It is worn for a few days up to a few weeks so you get a lot more information than an ekg in the office. If you are pausing often or for more than the 10 seconds you already know about, you can rule out medication for bp. Unfortunately the only thing that will prevent pauses is the pm.

Don't wait if warranted...

by MelodyMarch - 2014-09-16 11:09:08

Mike-

I had to fight almost a decade of passing out and confirmed tests (tilt table) before they would implant me because I was "too young". I also had several injuries from my passing out over the years. I have felt so much better in this almost year since I was implanted that it is night and day.

With the pacemaker they can also fix your sudden jumps in HR when you stand with a beta blocker. Even you out so to speak. I have NCS and SSS, so the pacemaker has made my balancing act so much easier.

As for site placement, I have a slightly lower placement and instead of putting the incision over the collar bone my EP entered from the side. This was done so I would not rub on it when playing violin or viola(a big part of my career). That is just a discussion to have with your surgeon on ultimately what is best for you.

Best of luck on your decisions

MelodyMarch

Sub pec

by PeteFindlay - 2014-09-17 06:09:44

Nothing to compare it with, but recovery from sub pec implant didn't seem too bad to me. Mine was fitted 6th May. I found it ached rather than hurt. It's what I'd imagine it would be like recovering from being kicked in the chest by a horse (never been kicked by a horse, either!)

Six weeks limited mobility anyway, same as for any implant. After that, a few aches as I started to work the muscles again, but nothing much.

Mine's totally invisible apart from the incision, and I'm completely unaware of its physical presence in any activities. Emotionally it's a bit more of a challenge, and still a bit of a shock to me, despite being completely back to normal. That's what this place is for!

Pete

placement

by Tracey_E - 2014-09-17 09:09:13

Really, it's a personal choice. It looks better buried and it's out of the way, but healing is longer. It's not awful, but digging deeper means it's going to hurt more. I feel it was well worth it.

I was 27 and very underweight when I got my first one. My dr had never done a young patient before and was more concerned about how it would look than I was, so he brought in a plastic surgeon. In hindsight that was overkill, but at the time no one was doing alternative placements so they were making it up as they went along. I love to hike with a backpack and lift weights, two things that might be affected if it was closer to my collarbone. I might resent having it more if it got in my way.

And it looks good :) I have a picture in the gallery somewhere of me in a tank with spaghetti straps, you can barely see my scar, no sign of a lump (the plastic surgeon was REALLY good).

Get the second opinion

by Marine8914 - 2014-09-17 12:09:24

I kept going into second degree heart block and would become bradycardic and hypotensive. After six months of testing I had a pacemaker implanted because we discovered that my bradycardia was causing my hypotension which caused my Syncopal episodes. I had a dual chamber pacemaker implanted and I am regretting it every minute. I started doing some research and have found that a biventricular pacemaker is a much better option for situations like yours and mine. I am not saying don't get a pacemaker. I am recommending you get multiple opinions as well as doing some research of your own. Ask about the biventricular pacemaker. Because I have a dual chamber already, every EP/ Cardiologist I have seen doesn't want to change it to a Biventricular pacemaker and I am still having a lot of issues.

Good luck and do not rush into anything.

Stomach sleeping

by alexisbagel - 2014-10-09 10:10:11

Hello! I'm a side and stomach sleeper as well. It doesn't work at first with the ICD. But, after a few months you can start to flip over. I have to put a towel/stuffed animal/pillow under the defib shoulder when I'm on my stomach. When side sleeping, I prefer to sleep on the defib side. On the other side, the defib falls a little so again I use the pillow/stuffed animal. It works!

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