Sick Sinus Sydrome

The reason I had the pacer put in 11 years ago was due to what doctor said was SSS. Today for the first time since 1997, I learn from the EP doc that my heart paused for 7 seconds during my sleep back in 1997.
I am scheduled to have the generator taken out next month because this will be one of the two ways to find out if I need the pacer or not and the fastest way.
I have done some research on SSS, and I am really doubtful that I have SSS as I don't have the symptoms of it.
During the 11 years I have had the pacer, I had it turned off for a year and from the reports I find it surprising with the statement on there that reads,"Patient stated she felt great since the pacer was turned off." I wish I remember how great I felt because it will ease my mind about the decision I make today with regard having the pacer taken out. So, if I indeed has SSS, won't something bad happened in that year while the pacer was off? I questioned the doctors with it and I got no answers from any of them.
Since the doctor agrees to take it out for me, is that mean he is also having doubt that I might not need it in the first place?



by ElectricFrank - 2008-10-15 01:10:44

My experience turns out to be fairly common. When I saw the cardiologist with what was obviously AV block (even I could see it on the ECG), he diagnosed my with SSS, variant angina, and "heart block". It seems they just put down all the possibilities to cover their backside. It took me almost a year to get the SSS and variant angina off my medical records. At one point when I thought it was taken care of I saw a new doc for something totally unrelated. He requested my records from the cardio's office and the next time I saw him he ask me about my SSS! At this point I wrote a letter to the cardiologist office stating that I did not give permission to share the SSS or variant angina with anyone outside his office and that I would take action against him if he did.

It now appears to be gone.

As for your 7 second pause in 1997, you may have had a virus or something that caused temporary rhythm problems. I went through a time last year when my pacemaker failed to capture ventricular beat for times up to 5 seconds. The Medronics rep turned the pacing voltage up and all was well. After a couple of weeks I saw him again and my threshold was back to normal. We turned the voltage back down to its original value and its been working fine since. At the time I was feeling lousy and aching all over so I guess I had some sort of bug.

I hope it works out well for you. You might suggest they give you a Holter monitor for a few days after removal of the pacer to see if you are having any problems during sleep. It would also give you more confidence that all is well.


Yes Or No

by SMITTY - 2008-10-15 11:10:53

I say leave it if the pacemaker is not causing you pain and there is at least a couple of years battery life left. Why risk more surgery to have something removed that is not hurting anything.

I got one for SSS, which I didn't need, and had it for almost 3 years. with that thing causing me many problems by shocking me sometimes. The doctor told me that while he didn't think my pain was from the pacemaker he would remove it or turn it down so low that it wouldn't help out unless my heart rate dropped into the 30s. I told the doctor to just turn it down and if that didn't stop the problem I could have it removed later. It was turned down and guess what I did need the thing until about 2 years later so they just turned it back up to 70. I have been using it more than 75% of the time for about 3 years now. It still shocks me sometime, but nothing like before, especially after I got the nerve deadened that the pacemaker was "stimulating" and making me think I was getting shocked.

I'm glad I kept the thing and didn't have to go through the surgery of getting another one. Of course mine has never been a minutes problem, except for the shocking problem.

So, like I said, if it ain't hurting you why not keep it just in case you do need it somewhere down the road. It can always be removed later.

You know you're wired when...

You always have something close to your heart.

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