PM lead problem

My lower lead has been shocking me since placement feb 10 after trying to re adjust it 4 times the nurse came in yesterday when i was out of it in surgical recovery and turned off the lower lead. When i woke up there was a note from her saying what she did. She said she turned off the lower lead and i didnt need it cause u only need it if u have blockage. I do have right blockage and i do need it. If not it would not have been going off And shocking me. They need to move the lower lead as it is resting on a nerve causing abdominal shock when it goes off. If they move it now it will be a lot easier than in a few months once scar tissue forms. Cardio said he wants to wait three months and once scar tissue forms turn it back on and i may not feel shock. Im sorry but that just sounds stupid; that is just avoiding the problem. What can i do? Im going into see him today as i got nowherenover the phone. I want the lower lead back on and ill deal with shocks rather than it not be on but i feel like it should be moved. Does any one have any advice? I dont know what my options are or what my rights are in deciding what we do. Thanks

2 Comments

options

by Tracey_E - 2010-02-25 08:02:38

It's your body so the final choice is always yours. First thing I would do is ask to see an interrogation report to see just how much you're using the problem lead.

What your dr says makes sense to me. They can reposition a lead for about a year after they put it in so three months will not make a difference. The scar tissue builds from the first day but it's not held in place so well that they can't move it for over a year. If the lead is well positioned and secure but hitting a nerve, waiting to see if the scar tissue takes care of it sounds to me like a better choice than moving it to a possibly less desirable location. Also, given your other issues, I can understand that he would want to avoid an extra surgery if possible.

It sounds to me like he's taking the conservative, least invasive approach. If I were in your position, this would be my preference- wait and see rather than rush into another procedure.

Lead Problem

by SMITTY - 2010-02-25 12:02:26


Hello Paul,

First let me say I totally agree with Tracey about it being your body, and waiting three months is not unreasonable, but I have been there and done that. Also I have not yet heard of a pacemaker problem going away without intervention.

Now, I'll tell you my experience which was not exactly like you have but close enough for government work. In my case the lead to the lower chamber was "stimulating" (that's what they called it for me) a nerve on my right side and shocking there fool out of me every time the pacemaker sent an impulse to my heart. I must have had 25, at least, attempts at changing the settings all to no avail. Of course all the time I was being told "your pacemaker is working fine" as if I didn't know that from the shocks it was giving. After almost five years I was given the option of having the lead repositioned or having the affected nerve deadened. Neither procedure carried any guarantees of success.

Since my lead had been in place so long I chose the nerve deadening. That worked, but shortly afterward I sat up in bed one night and noticed the right side of my abdomen looked as if I had swallowed about half a basket ball. So it was back to the doctor, where the first thing I heard was we never saw anything like that before. Over the next few months I under went I don't know how many tests. Nothing was done for my problem, but my experience did cause some doctors to write about it and get it published in some medical journal.

To make a long story short, the nerve deadening had apparently paralyzed the right side of my diaphragm and with that came more problems that I'll not even go into here.

As for you doctor saying wait three months, to me that sounds like a doctor trying to buy time because he doesn't know what to do. Sure a little scar tissue, calcification or whatever may build up at the tip of the lead. That inhibit the flow of electrical current to the heart wall, but if that happens I don't think it guarantees the problem with the nerve will cease. To make things even worse, repositioning the lead tip does not carry any guarantee either.

So what do you do? My first suggestion is that you ask the doctor to have a manufactures's representative take a look at the settings on your pacemaker and see if anything can be done. These are the people that in effect taught the doctors what the know about pacemakers and it stands to reason since it is their full time occupation, the may be able to help more. If getting a rep to see you that is not possible, then see another doctor if at all possible.

Also, get copies of all checkup reports. That way if any changes are made you will know and not have to depend on some nurse/technician, telling you what they have done. All changes in pacemaker settings are clearly marked with a ">" on the printout.

Good luck,

Smitty

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