Sick sinus syndrome cured?

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I am 38 and have had a pacemaker since I was 16. I was diagnosed with sick sinus syndrome and was told I needed this pacemaker because my heart rate got into the low forty beats per min when I sleep. I started to try to understand my situation more and some things didn't add up. My pacer was set at 75 beats per min and when he checked it one day I asked what my natural heart rate was. He said 65 and we found out that the sinus node in my heart is working. After doing some research it appears that sick sinus syndrome is not reversible. The dr said that my heart was healthy and I didn't need a pacer anymore. He wouldn't answer any questions and would not discuss whether he thought I ever needed it or not. Do I do what ever my dr says which he recommends to leave it in and let it run dead and live with it the rest of my life? Would insurance even pay for a procedure that isn't medically necessary? I am hesitant to get them involved? Do I continue to see my cardiologist because my heart is now normal? I know this is a forum to discuss living with a pacemaker but has anyone here been through this? Do I wait to see if my heart disease comes back? Am I still marked with having a pre existing condition? My cardiologist wasn't very helpful. I have an apmt for my family dr in about a month and hopefully he can help.

5 Comments

wow

by Tracey_E - 2014-10-25 10:10:23

If you are cured, how wonderful for you!!

My first question would be is the pacer pacing at all. Get a copy of the last pacing report. Obviously it's not pacing much or he wouldn't say you don't need it, but I would want to know how and when it is pacing. For instance, if your rate is pretty good 99% of the time but 1% it takes a nosedive, then you don't pace much but you do need it those few times it kicks in. Or it may work at rest but pace when you are active. Or be ok during the day but drop at night. Sitting in the office with a decent resting rate is good, but it takes a lot more for you to feel good.

If you have the pacer, you will be forever considered to have a pre-existing condition. Insurance companies are cranky like that, anything at all that might cost them money gets labeled so they can charge more.

I would leave it if it's not bothering you or causing problems. The box is easy to remove but the leads require a specialized surgery with a laser to separate the leads from the scar tissue. Even a low risk surgery has risks and recovery time.

good news

by Tracey_E - 2014-10-25 11:10:05

Sounds like you may not need it! That's really wonderful. Do you feel good when you exercise?

I'd still leave it in. In addition to not doing an unnecessary surgery, if you should ever need it again it's easier if you already have the leads in place.

Sick sinus syndrome

by bstrong - 2014-10-25 11:10:40

I don't know if my previous post went but I'll try it again. The dr said my pm was set at 75bpm and it was being used 50% of the time. That sparked my interest because I don't exercise 50% of the time. I told him to take it down to 50bpm and he reluctantly did that. He kept it there for a few weeks and when I went back he told me it was being used less than 1% of the time. I asked him if I need it still and he said that this isn't a research hospital and I can get a new one or leave it in ( at that time I had 6 months left of battery). I then went to another dr who set it at 30 and he said I never used it. I could tell this guy didn't want to get involved and said he would recommend just to keep it in.

Second opinion?

by StarWish624 - 2014-10-27 07:10:27

I would strongly suggest getting a second opinion. This is very important. This could be a possible life and death situation - if the doctor is incorrect. You need to be absolutely sure. Surgery always comes with risks. And the removal of a pacemaker - well, that goes without saying. Protect yourself. Glad that you came here. Best Wishes.

Agree with second opinion

by dkburnes - 2014-11-04 03:11:41

I strongly agree with getting a second opinion. I would want another opinion from a specialist. If the PM is not needed, I would want to understand what affect leaving the implant and leads would have on my body. Glad you asked. Take care of you and ask questions. If you feel uncomfortable, keep asking.

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