I must ask again--Pacemaker infection?

[Dodiad71]

I recently left a post about a possible pacemaker infection the response was quite brief. I am being told I have a pacer infection. However after numerous blood counts, blood cultures, echo, chest xrays, along with NO fever, there is not a single shred of evidence supporting this diagnosis. Flat out nothing. My pacer is at 67 months and near the end of it's battery life, so time is not on my side here. It's also on recall. It is displaced, however, and the skin is under a lot of tension but intact. It is painful and discolored but strictly at the tension point. The pocket is NOT warm, NOT discolored, and only slightly "swollen" though I believe this appears to be the displacement of my pacer toward the surface of my skin and not necessarily swelling. My internist doesn't think it's infected. There is no evidence over the prior 67 months that I have developed an infection of this kind. My primary cardiologist doesn't think so either, but his colleague is adamant and wants me to go through a total device extraction anyway. I am concerned this is highly unnecessary and my problem can be corrected with pocket revision.

Either I am a very rare case of bacteremia without ANY evidence and made medical history, or I don't have an infection--especially one of this kind.

Is there anyway to know statistically what the likelihood is of an infection here given ALL my normal findings? Your additional thoughts would be appreciated.

[Cleveland Clinic]

dodiad,

Im sorry, I dont mean to be short -- it is clear that this is causing you a lot of stress.  Clearly there is something that has the electrophysiologist concerned. Unfortunately, there is no way with these complexities that I can answer your question over an internet forum. I can give you 2 options to hopefully steer you in the right direction or that might help alleviate your concerns.

1) Seek a second opinion at a large academic referral center. We see these cases quite often at the clinic. You would be more than welcome to schedule a visit here.

2) Set up a meeting with your 2 cardiologist and an infectious disease specialist. These are called case conferences and in extreme circumstances the physicians involved can meet and discuss. It is somewhat wrong for one doc to tell you one thing without discussing it with the other.

good luck

[PikaPika88]

Hi Dodiad,
Have you check with your Dr, your pacemaker's lead is OK too?  I'd one lead pacemaker before and the lead was leaking.  Battery was 11 years old.  I was a bit naughty because I didn't turn up for my pacemaker follow up.  I just disappered until I had my irregular pulse.  They had to pull out the old lead and give me 2 leads and a new pacer.  I didn't have my pacer infected.  After a week, I felt pain in my pocket.  I went to ER and the doctor told me something about the pocket.  If I'm not felt well they would find another place to make the pocket.  I scared like .... I went home and took some antibiotic (self prescribed) and never never mention it again.  Now it is fine.  May be your leads are old as well.  That's why they make this decision.  Let us know how you go.  Take care.  Pika.

[calico1]

Hi,
Sorry to bother you. I've been trying for months to post my question to a doctor. It keeps on saying that the limit has been reached even there are no post yet for that day.
Thanks.

[Dodiad71]

Hi pika, thank you for your concern and words of encouragement. Actually, my pacemaker works fine. The leads work fine. There is nothing anywhere to indicate there is a problem, other than the fact that my pacemaker generator is pressing on my skin so much it wants to escape through that skin. Because of the tension due to my pacemaker being basically dislocated, the skin is tender and thinning. So time for dealing with this issue is short. My problem is that I don't have the time to seek another opinion and need help now.

As for any procedure, I have already been to a large academic medical center (the best in my state supposedly for heart issues) and my overall experience there recently left a lot to be desired. I was originally hospitalized for my pacemaker but after a couple days of endless tests yielding no evidence of infection and the fact that I ended up sicker than when I was admitted (before even having any surgery) I was discharged after I pressed them to release me. I still have to follow up and it seems they cannot get it together.

[Dodiad71]

Hi Calico,

Unfortuntately posting on this site is random and can take a while. It seems that the posting times are changed daily to accomodate the different time zones. I am in Central time and have had the best luck between 8-10am.