Pacemaker being removed due to misdiagnosis

removal

by Tracey_E - 2017-12-08 21:40:09

I wouldn't be in a rush to remove it, JMHO. Vasovagal syncope can be a combination of heart pauses and blood pressure drops. The pacer only fixes half of the problem. When it paces, it's likely to only pace for a few seconds at a time which statistically shows up as nothing but practically is the difference between passing out and not. I would treat the blood pressure and continue to monitor until it's under control rather than be in a hurry to get it out. Hopefully you will end up getting it out in the end, but you don't want to rush into it then end up needing it afterall. 

Have they discussed the position of your leads? What you are feeling is not normal but can happen when a lead is in a bad position. 

Leads and BP

by Starcrost - 2017-12-08 23:00:32

Hi Tracey E,

I never fully regained use of my left shoulder and arm post surgery. It causes pain to extend my shoulder or raise my arm past a level straight out position. Six months after surgery I am told it should have fully healed. It's been determined by PM records and the HM records that I use the lower lead not at all and the upper one has fired less than a handful of times. I've been off all heart meds for 2 1/2 months with a level range of around 140/85, my new 'normal'. I have not had a syncope episode since a month after the PM was placed.  My EC went over every scan leading up to and since the PM was installed. It causes me pain and is not actually being used. For that reason he had reccomended it or the heart monitor be removed as neither seem to have a useful function. I chose to keep the heart monitor in place just in case the decision ever came into question. The lower lead is also slightly out of position. He said it is not an issue because I don't seem to use that lead at all but it can cause serious discomfort. Of all people, I honestly do not want to ever think about having to do this surgery 3 times! I can only make the best decision possible with the information given to me and that I can find through my own research. A year and a half ago, I didn't even have a blood pressure problem....everything changes so fast.

Symptoms

by brandys58 - 2017-12-09 00:07:58

This is the first time I've seen anyone explain the VERY same feeling I have under my rib cage. I have been saying its like a baby kicking. I went to the Dr. yesterday, he said it was the pacer causing spasms in my diaphragm so he had the E.P. check it. He did a few things and the kicking stopped but only until I got home. It's back now, not as bad but its back and I now feel so tired and Im dragging. I am only 10 days post procedure but, already not too happy with my decision to get this. My cardiac issues are very different from yours, but my advice to you would see if they can just turn the pacemaker off for a while as you go through more testing. I wouldnt go through another operation until they are sure of whats happening and would also get a second opinion. Best of luck...

last thoughts

by Tracey_E - 2017-12-09 10:51:13

If the ventricular lead is causing problems, it can be turned off. Any pacing you do would be atrial anyway. 

Shoulder problems are not at all normal but can happen if you don't use the arm enough while healing. Have you had PT? 

Last thing... you said "the upper one has fired less than a handful of times"  Based on that, I would keep it, at least for now. Those are times your heart would have paused and you could have passed out. When it only paces a few seconds at a time it doesn't seem like much and statistically it shows up as 0 on the reports. If those are seconds your heart would not have been beating, then those few seconds become very important. 

Also VVS

by Washingtonienne - 2017-12-09 22:24:04

I have my pacemaker because of VVS or NCS or Dysautonomia - whatever phrase you want to use to describe my brain and heart not communicating well.  I only had my loop recorder a few months before it caught a significant pause when I passed out.  Sometimes I passed out more than a year between episodes, sometimes it was within a day of the last episode.  VVS/NCS can be so unpredictable.  <sigh>  

Anyway, I second the recommendation to turn it off for a while before making the decision to remove it. 

What misdiagnosis?

by Gotrhythm - 2017-12-10 16:18:12

My friend has a pacemaker due to NCS (neurocardiogenic synpcope, also called vasovagal syncope.) The pacemaker is because, when she does faint, not only does her blood pressure drop, her heart has an alarming tendency to stop, or slow to levels incompatible with life.

I was with her when her heart paused for 16 seconds. She said she felt strange but she didn't pass out, possibly becuase she was lying in a hospital bed at the time. She was in the hospital because the day before while at home alone, she fainted, fell, broke her wrist and got a concussion with a brain bleed.

Her doctor was adamant that because of a diagnosis of neurocardiogenic syncope, the same thing as vasovagal syncope, she had to have a pacemaker, even though it is true, the pacemaker will not address the underlying cause of syncopal and near syncopal events. You say your pacemaker has fired only a handful of times. Those are times when your heartrate fell and the pacemaker kept it from plummeting to dangerous levels.

I agree with others. Turning the pacemaker off is much easier than removing it, finding out you really did need it, and replacing it. Ask you doctor to explain the rationale for a pacemaker even though it will not "correct" VVS.

About the shoulder. Removing the pacemaker isn't likely to help. The pain isn't about it "being healed." It's about ligaments, tendons and facia that were allowed to get too tight through disuse. The less you use it the more it hurts, and the more it hurts, the less you use it. When I had a frozen shoulder, years before the pacemaker, I found deep tissue massage to be the most helpful, starting with loosening the tissue under the arm down the ribcage. 

Good luck. Hope you feel better soon.

Neurocardiogenic syncope and pacemaker

by Blondpacer - 2017-12-10 20:55:18

I was diagnosed in 2000 with syncope. Then started fainting and heart drop so low a pacemaker was put in @ 42 years old.  Brain doesn't communicate with heart to increase heart rate when blood pressure drops. So, yes a pacemaker is necessary. Tilt table was positive. I'm on #2 ..

NCS and pacemaker

by YoungEsquire - 2017-12-11 02:10:03

i was recently diagnosed with NCS and got a pacemaker. I've noticed a big improvement in how I feel.  I would humbly recommend that you Work with docs on tweaking it before you get removed. 

Diagnosed with PMT

by D_davis72 - 2017-12-11 02:38:39

i also feel the weird sensation in my rib cage. Feels like a tens unit. 

Follow up to removal

by Starcrost - 2019-08-08 12:46:51

My pacemaker was removed leads and all just over a year ago. The heart monitor was also removed in the same procedure. On removal, the lower lead was found to be fractured and firing erraticly on its own. The pacemaker and leads were tested and found to have some infection present. It took the opinion of 4 Electrophysiologists to convince me. In looking back it appears to have been the right choice. During pre surgical workup, a piece of broken medical equipment was found lodged in my heart from the pacemaker implant. It has caused significant damage to my Tricudpid Valve needing repair. It was in place 10 months when it was discovered. I hate to think how long it might have been if removal prep had not found it. It was removed soon aftervthe pacemaker in a separate surgery. I am finally recovering and feeling some strength returning. I have permanent side effects of the surgeries that I will now need to learn to adjust to. I have had some lightheaded spells since removal but good education on the factors that trigger my vaso episodes has cut them down to very rare. Overall, for me, I believe this was the right choice.