I'm getting my PM & leads removed.

After only 12 months with a PM that was fitted for type 2 av block, I'm getting the whole thing removed. I've had pain & discomfort from day 1. It's taken 12 months for the Doctor to say I'm a good candidate for lead removal, mainly due to the trouble I've had since the PM was fitted, but also for the fact I wasn't problematic to av block before being told I had av block. That's all I can say really. I await the operation date, and only time will tell if I make it out ok. Operation is via the UK NHS.

7 Comments

Removing PM

by SMITTY - 2011-10-28 02:10:47

Hey Climber,

I too endured lots of misery for several years after I got my first PM. I got fed up with being told "its not your PM causing your problem a hundred times, or more, and asked for it to be turned off. Like you, I didn’t know what may happen but I was sure things couldn’t get much worse. So the Dr lowered the low set point to 30, which meant the PM never kicked in as my natural heart rate was 55 to 60. A couple of years later I had a problem that made the PM necessary and all they had to do was reset the settings.

So, you may want to consider just having it turned down. That way it just sits there doing nothing, but if you ever do need one you got it covered with some settings adjustments.

Good luck,

Smitty

No On/Off Switch On PM

by SMITTY - 2011-10-29 03:10:17

To nswer Domb's querstion, according to my EP a pacemaker cannot be turned off per se. When a PM is assembled the circuity is powered up and will remain on until the PM battery is totally exhausted. There is not on/off switch.

They can be "turned down" to the point they will not send impulses to help the heart beat, but the sensing part of the circuit remains on. So when it is desirable, such as in a case where a person is in the final stages of life and there is no hope for recovery, the PM can be, for all practical purposes, made in operative.

In my case when I asked that mine be turned off because it was shocking me the low set point was lowered from 70 to 30 and since my unassisted heart rate was in the 55 it never fired. But had my heart rate dropped below 30 the PM would have come alive and kept me going until I got help.

Smitty

Smitty

by climber - 2011-10-29 06:10:27

As you Smitty, I've been back and forward to the Doctors, getting nowhere, un-till I got a 2nd opinion. It was only then I got answers. The option to turn it down has never been mentioned, that may be because it'e turned down to 40. My 'at rest HR' is in the low 40's anyway due to my fitness level. The pain etc I feel is 24/7. The only rest from it I get is the little sleep I manage via the sleeping tablets I take. It seems the only way to solve this is to remove the PM and see if things get better pain wise. I've no symptoms for av block, now or before the PM was fitted, apart from that 1 sign on an ECG over 12 month ago. As soon as I get av block signs & symptoms, at a later date, and they become problematic, they'll fit a new PM. It's a risk I don't mind taking as my quality of life has lowered so much over the past 12 months. Basically I was existing & not living.

PM Removal

by donb - 2011-10-29 09:10:47

Hi, I posted some time ago and now just went over all the posts with Smitty & others. I am a little confused as it's been mentioned so many times of having a PM completely turned off. Don't know if this is possible or not, maybe only set to a very low HR like in your case. I understand that you still have the pain as the PM is still active.

I had to have my PM removed because of erosion a few years ago. At the time my electrical was OK, got a second opinion from the top specialist in the largest heart hospital in Michigan. I was told my ECG showed good electrical conduction & questioned me why I had my PMs' 17years prior. Well, finally he decided that I may have been one of many patients who have had electrical recovery.& wished me luck. Well, 2 months later I was back to 2nd degree block along with a start of Atril-Fib and my 4th PM along with another pair of leads in my right chest. The reason I'm again posting is that I was 10 years older than you with my 1st PM in 1992 and now at age allmost 80 doing great. I just want to go along with Smitty, I know the pain panic you're into but PM removal can be also be a gamble because of other risks. Like you said, you can always have another PM later. AND, my 4th right chest PM & leads have been super, don't even know it's there even doing mechanical bull work under my vehicles. Hopefully all goes well & get rid of the constant pain. donb

Thank You Smitty

by donb - 2011-10-29 10:10:25

That answers my question as I've often seen sugestions posted of turning the pacing off. Some of the other newer features probably can be set to off, much like RR. I have never had enough nerve to ask my Cardiologist as he's certainly go into orbit before giving a true answer. I did have a good informative chat with my St. Jude rep recently and after telling him I've been in Electronics since 1950 he really opened up with info. Thank You Smitty!! donb

ronaldo

by climber - 2011-10-29 12:10:49

Yes ronaldo, I'll private message you when I get more news. I'm dealing with the UK's national health sevice, so it could be sometime before you hear from me.

donb

by climber - 2011-10-29 12:10:53

I feel if I was 60 years of age, and not 49 as I was when PM fitted, I'd keep the PM and live with it. But at now 50 I still feel I've a lot of active life in me, climbing, mountaineering etc, but as I feel now with this PM I can't do what I feel I should be able to do. If after the PM is removed and I then start showing signs & symptoms of av block at a later date, I'll get another PM fitted, that's if I'm not already dead. As I said in one of my posts, I'm exsisting not living. I've another appointment with the hospital to go over the details & have tests, so things arn't set in concrete.

You know you're wired when...

Your ICD has a better memory than you.

Member Quotes

But I think it will make me feel a lot better. My stamina to walk is already better, even right after surgery. They had me walk all around the floor before they would release me. I did so without being exhausted and winded the way I had been.