One Year CheckUp - Only 1.6% Usage?

Just in from my first annual check up with Medtronic Surescan that was implanted May 2018 for Second Degreee AV Heart Block. Had issues with implant procedure that required two more trips to the hospital, including an extended stay on high-dosage antibiotics after the incision came open. Took six months to convince the doctor to lower the setting to minimum Heart rate of 40 and no max (I am youngish - 46 - active, fit with low resting HR previously). In December 2018 I was pacing 5.5% of time before they lowered the lower setting (I could feel it at night). No issues whatsoever since the December visit and lowering the low rate to 40. 

Today I went in and learned I am now only pacing 1.6% of the time. The original implant was diagnosed and placed within a week, without much time for consultation or review. I do not have an EP - only a cardiologist. I asked today if I need the PM since the 1.6% seems to be just the device doing it's thing. The doctor didn't have a very good answer - just said it was already in.

I also asked if something else could have caused my symptoms last year - I travel overseas (Asia and South America most recently) a lot and at the time of implant had odd bloodwork that my primary care physician wanted to look into further but the cardiologist told her I needed the PM ASAP due to complete heartblock (charts say 2nd degree...). The cardiologist today did admit that an infection or virus can cause temporary symptoms that mimic heart block and can be treated. This was a lot of information to take in and I didn't know what to ask.

While driving home I began to wonder if the antibiotics they gave me for the PM implant infection and issues could have resolved a latent tropical infection that was causing the heart block symptoms and maybe I don't need the PM after all.

Anyone ever hear of anything like this? I mentioned removal of the PM in a year if I'm still not using it and the doctor made a joke about all the problems with the implant and if I wanted to risk that again (totally botched incision and implant, requiring two more procedures and the gift of C. Diff.). I always felt like this happened very quickly with no real warning. My fortune cookie this week said to trust my instincts...:) I am considering going to an EP if I can find one to get a second opinion. Not sure what I would do if it turns out I don't need a PM and have one.

Any input is greatly appreciated. Thank you in advance.

6 Comments

Suggestion

by Gotrhythm - 2019-06-25 16:15:00

I don't have any thoughts about whether or not you had a problem that was misdiagnosed.

I would suggest before going to the trouble and risk of removing the pacemaker, you try turning it off. See if you really do get along fine without it before doing anything drastic.

Just a suggestion.

intermittent heart block

by SamanthaS - 2019-06-25 16:51:42

I had intermittent 2nd degree block for years - undiagnosed.  I would go months even years without a fog/vertigo episode and then have a weekend of weirdness.  I had my 3rd degree event last year on Thanksgiving and am now pacing 100%.  I wish I had been tested and had the thing placed years ago but I was very fit and active and not a single doctor ever considered my problem was my heart.  A neurologist diagnosed vestibular migraine and even tried to get me to take meds for that.  I could easily have died and taken others with me if I had been driving during the event.  Get more than one opinion on this and get more testing if need be.

One more thought

by Gotrhythm - 2019-06-26 13:26:29

Before trying to make any decision, you really should see an EP. 

What Gotrhythm says

by jcb - 2019-06-27 13:36:07

See an EP. Also you don't give much information to go on. It's  important to know whether your second degree block is a type 1 or a type 2.

Pacing 1,6% could possibly mean kicking in once every minute or so for a single beat at night. If that's the case you can possibly do without the pacer. 

It could also mean you have a 6 second (or longer) block several times an hour that requires pacing. In this case you probably want to keep the pacer.

 

 

 

Ep

by Hairbyelectro - 2019-06-29 09:48:26

I would see an EP as soon as you can. Personally I wouldn't trust any cardiologist that wasn't specializing in the issues you are experiencing. Be your own advocate and ask what you want to ask and find a EP that you trust....they are not all created equal. 

Update: Saw an EP who says I never needed PM

by Kassandra - 2019-11-04 04:42:54

Finally got in to see an EP. He reviewed my file and confirmed my suspicions that I never needed the PM. According to my original Holter monitor results he could confidently say I never had heart block and my symptoms are extrinsic to the heart. He turned the PM off and I will see him again in two months after further testing for sleep apnea.

I am not pleased with the cardiologist who put the PM in and now need to figure out who to have remove it. It’s been 18 months and the PM has already been removed and replaced once due to internal bleeding and possibility of infection. Ugh.

You know you're wired when...

Your electric tooth brush interferes with your device.

Member Quotes

I am just thankful that I am alive and that even though I have this pacemaker it is not the end of the world.