pacemaker dependancy

I was born with a defect that resulted in me having a pacemaker at 18mo. Now that I am 29 years old, my original leads are struggling to perform adequately, resulting in me "using up" the battery life of most devices in five years. I have had about five pacemaker replacements and now I am having issues with scar tissue and my chest cavity being concaved where they have removed tissue. During my last operation, doctors wanted to move my pacemaker to my abdomen, but I was very scared to have my implant relocated there. I was given new leads, but they were pocketed under my ribcage, and my old leads are still connected to my pacemaker. I can feel where the new leads are pocketed, and I am terrified of having my device relocated to my abdomen because I already feel this discomfort. Does anyone have experience with multiple pacemaker replacements? Doctors don't want to remove my old leads because they have been there so long. I am not sure why they didn't move my pacemaker to my other shoulder. I am sad to think I might have to have open-heart surgery to have these new leads removed when I never wanted the implant in my abdomen in the first place. 


2 Comments

so many leads

by Tracey_E - 2019-08-15 22:36:31

Are the newest epicardial? Wondering why removal would be OHS. Extraction is generally done with a laser. They do it with a cardiothoracic team on hand in case something goes wrong and they have to do OHS, but that's become more and more rare. I talked to my EP, who does many of them, and his entire team (large research childrens hospital) since they first started doing extractions has only had two end up in OHS. Two out of thousands. 

I'm surprised your first ones weren't in the abdomen. They usually put it there in children then move to the chest when they are closer to done growing.

One of our moderators, Don R, had his moved to his abdomen and he says it's very comfortable. He may or may not see this and respond. He has been dealing with some vision challenges and seeing the screen gets harder every time I hear from him, and he hasn't posted in a while. But he was pleasantly surprised how good it felt after it was moved. He had infection on both sides of the chest so that's how his ended up abdominal.

Three people I would have consults with (assuming you haven't already).

One, talk to an ep who specializes in adult congenital. This may mean traveling but imo it's well worth it for the expertise This is what I started doing two years ago. I first went just to talk to them but it's night and day from a regular cardiologist/ep who has very few young patients paced long term. It's what they deal with all day long so they are better at handling problems that crop up from many device changes. I changed my care and haven't looked back. 

Second, talk to someone who specializes in extraction, someone who does at least 100 per year. In my case, this is my adult congenital ep. They can assess your risk and tell you frankly what would be involved in removing the very old leads. My ep has already told me that I'm going to be high risk and there is another surgeon who invents many of the new techniques and teaches extraction, so my doc feels he's better suited for me when the time comes because he deals with more high risk cases. After talking to my old cardio, I was terrified of extraction. After talking to my new adult congenital ep, I still take it seriously and am planning to put it off as long as humanly possible lol, but now I am more comfortable with it because we have a plan and I know what's involved. 

Last, I would talk to a plastic surgeon. My previous ep brought in a plastic surgeon to assist. My first 4 were buried under the breast. The scar tissue was building up and got uncomfortable so the plastic surgeon rebuilt the pocket when I got #4. It was great! No more aches. And then the stupid surgeon decided the pacer was buried too deep so for #5 he went and moved it, but that's another rant lol. But 4 after the plastic was done was awesome. Anyway, ep's know the heart. Plastic surgeons know how to make things look and feel better, that's all they do, and fixing up an uncomfortable pacemaker is probably the easiest job of the day for them. A plastic surgeon and experienced ep working together is your best case scenerio. 

Hope that helps! The Adult Congenital Heart Association has a list of clinics on their website, that's how I found mine.

not much help

by dwelch - 2019-08-16 09:28:04

I don think I will be much help, but to the question of multiple replacements like Tracey I am on my fifth device.  I started at 19 years so I was mostly grown.  over 30 years with devices in the same shoulder.   one lead is that old, the other lead from the first pacer broke before or at the first replacement so it is in there taking up space.  I got another lead then and the fifth device is a three lead biventrical to balance out so many years with one lead on the bottom.  There was a risk that there wasnt room for a fourth lead on that side, but Im a big guy it worked out.  The option I was given was to tunnel over to the other side or lead removal.  In the end I can stay on this side for a bit longer.  I supposedly have a really good surgeon, I wouldnt have any way to confirm or deny that.  Told he is the one in the region that you want to go to for lead removal.  Again I have no way to confirm/deny this, just what I was told.  I am very happy with my EP as well she put in the extra effort when I was having an issue with my latest device.  If you are interested/curious message me..

I am also confused as to why the abdomen rather than moving to the other shoulder.  Unless there is a medical or technical reason I would think they would give you the option or at least give you reasons why they are making these decisions.  Likewise why open heart surgery.   If they cannot answer the why question, maybe its time to talk to someone else.

If nothing else get a second opinion, be it another local doc in a different practice or travelling to the next big city from where you live.  That doc may end up with the same answer but might be able to explain it better.

 

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