Life after pacemaker removal

Hi everyone, I am a 25 year old female who just had a pacer placed 3 months ago now for bradycardia after having had mono and not eating properly for a couple months (my heart rate was dipping into the low 30s for three days). The pacemaker however while resolving the bradycardia, did nothing to make me feel better and in fact I have slept horribly and been uncomfortable for the past three months and I actually developed additional problems after the pacemaker was placed (orthostatic hypotension). I am now finally doing better now because my body is taking care of itself thank goodness. Anyways, I went to the Cleveland Clinic back in August to see a cardiologist there and he said that from what he could see, and based on my normal heart rate, age, the fact that the tests I had done were completely normal prior to implantation, and the fact that the electrophysiologist who placed it didn't do a stress test, heart mri, or ep study prior to implantation he said that he is in high doubt as to whether or not I ever needed the pacemaker. He said that next year he wants to do an ep study and a stress test and then he said we can talk about removal of the whole thing. He said that if I was older they would turn it off and just leave it in, however because of my age and the fact that for every year you have one there is a 1% cumulative chance of infection, it is better to remove it totally if I don't need it, then leave it in for just in case. Suffice to say I have been pretty upset since then and hopeful/nervous at the same time. However that aside, has anyone ever been through this, talked to, and/or know anyone who has had the whole thing removed and not put back in?
Thank you so much for any responses and I am sorry this is so long:/

4 Comments

Maybe a good idea

by ElectricFrank - 2012-10-13 01:10:41

If they do an workup like you describe and it comes back clean it is really up to you. I can understand them implanting the pacer originally if your HR was dropping to the low 30's. I think the idea of waiting a year or so is also a good idea. Some of these conditions in the heart have a habit of showing up again at some point.

Even if they took it out it's going to be a while before the area heals. So that's my rambling thoughts.

frank

hmmm

by Tracey_E - 2012-10-13 08:10:07

I'd probably leave it turned off a few years before deciding to have it removed. There is a chance of infection leaving it in, but there's also a chance of infection from the surgery to removed it. I have no idea how the odds compare but I wouldn't go to the trouble to remove the whole thing until I was 110% sure I didn't need it.

If you had bradycardia when the pm was recommended, you didn't necessarily need all those other tests. I'm not getting why the CC dr would say that the pm was unnecessary. A dangerously low heart rate is dangerous, doesn't much matter what the details are. I guess my point is don't be so quick to condemn the first dr, he saw a dangerous symptom and fixed it.

I think it's wonderful you may not need your pm anymore. Best wishes that you get back to full health, whatever path you take.

PM Removal

by donb - 2012-10-13 11:10:15

Hi Sandy, I'm in complete agreement with Frank & Tracy's suggestion of having your PM turned off. I've been the route with being without my PM & was told I won't need a replacement by the top Michigan University hospital only to find in 60 days my heart resorted to it's lazy 30's while at rest. As has been posted so often that so many patients have had their original heart condition return after a period of time without a PM. Ya, I was really in great spirits doing great without my PM only to find my diagnosis was wrong after 60 days. And furthermore, after 20 years with 4 PMs' I can now have them taylor my settings to my 80 year old needs.
Donb (the other (Don)

Vote for Removal

by ebfox - 2012-10-15 09:10:30

Hi JellieB,

I am in a similar situation (my PM was implanted due to Maze surgery) and my Sinus Node has recovered to the point that I am scheduled to have my PM removed on 10/31. I discussed this with my EP and he said basically that we can leave it in, active, or remove it. He did not advocate turning it off and leaving it due the infection possibility. He also commented that the lead removal will be much simpler now since mine has only been in for 9 months.

I am not being paced at all, haven't been for 4 or 5 months, so I am going to get it removed. I guess I will become a PMClub alumnus at that point.

Good luck to you on your decision-

EB

You know you're wired when...

Your pacemaker interferes with your electronic scale.

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