Sinus Node Dysfunction after ablation, now I need a pacer...

[cvnurseann]

I am a 27yr old female, with a history of arrhythmias.  Ironically, I am a cardiac nurse...but it is so much different when it is ME having issues..its hard to be the patient! I also am a single mom of a beautiful 7 year old little girl.  Anyhow, I first noticed a problem when I was 15 as I was a very active gymnast.  I was also on my highschool drill team.  I worked out 5 hours per day and was in great shape but could never tolerate running or any activity requiring endurance because my heart rate got to high. (HR of 202 at 2 minutes on m my treadmill stress echo) When I was pregnant with my daughter I wore my first holter which showed at rest, sinus tach at 143bpm on average.  I had a sinus node modification ablation for IST in January of 2007, and afterward I felt fantastic for about 3 weeks. Then it came back.  7 months later I had a second sinus node ablation which left me having a very irritable sinus node, with sinus arrests, pauses, junctional escape and ventricular escape rhythms.  This over time subsided, and ever since I have been dealing with significant sinus node dysfunction.  My resting heart rate is now in the 50's and I cannot get my heart rate up when needed. My baseline rhythm is a significant sinus arrhythmia with frequent pauses. I am always fatigued, tired, light-headed, and feel every pause. I worry because I get out of the car for example and start walking into the grocery store and feel my HR drop and I get dizzy, nauseated, diaphoretic, and it takes everything I have not to pass out.  I cannot have Epinephrine at the dentist because it drops my heart rate to the 20's!  I had a stress echo last week, and I exercised for nearly 7 minutes and my max HR was only 117 and all of a sudden dropped while I was still walking on the treadmill, to the 40's, causing a vasovagal-like response and I almost went down on the treadmill.  Immediately my doctor saw severe sinus node dysfunction with a blunted HR response to exercise.  I was having sinus pauses of 2+ seconds with my rate in the 30's, and this was immediately following exercise. My cardiologist and I have entertained the idea of a pacemaker for the past 3 years since my last ablation but he was hoping to wait until I was older to do this.  We seriously discussed a pacemaker during this stress echo, as he says he thinks I will feel much better with the help of a pacer.  My questions are what are the long term risks of implanting a pacemaker in a young 27yr old female? Is there a chance that pacing could cause CHF or cardiomyopathy down the road?  He also says there may be a significant  neurocardiogenic component to my sinus node dysfunction, what does this mean? That a pacer is absolutely necessary?? Also my left atrium is mildly enlarged and the RV systolic pressure is estimated at 31-36 mmHg, with mild TR.  These echo findings are changes from my previous echo, where all was normal and only a trace of TR.  Could this be resulting from my long term sinus node dysfunction?  I am very anxious about having a pacemaker implanted although I am sure it will make me feel better.  I just wonder if all of the above is indicative of a heart that is working too hard to properly function? Should I just go for the pacemaker, which I imagine will be a DDD pacer?? Thanks for any advice, I'm pretty nervous and anxious about this pacemaker, but I just want my life back - to walk in the park with my little girl and not have to worry about my HR tolerating the exercise.  Thank you!

[cindy707]

Good morning i read your post this morning and tend to agree with you....after being on this earth a short 27 years i would exhaust every single option out there for myself before you take this giant leap in your life.  Granted when the sinus node is affected things get pretty worrisome and professionally understand with medical science we are still a little limited on options i would not jump at this until absolutely every option has been looked at.  I completely understand your being anxious over what is going on and i would too.....i too have a pretty heavy medical background in cardiology as well and truly feel that we do make the worst pts.  You need to get all of your ducks in a row and research as much as you can and go as far as you can.  When my incident finally reared its ugly head 3 years ago and left me w. 4 pretty major diagnosis i did nothing but research for 90 days...found the best doc in my area, read every study there was out there, got pt. reviews, best hospitals, etc. rather than end up dependent on a permanent medical device and my hard work paid off.  I opted for surgery with one of the best docs available and one of the most progressive hospitals in northern california and yep i took a huge gamble but what were my options?  You know as well as i do being in the profession that docs are like hairdressers...sometimes you end up with a great one and other times one that is too quick on the gun.  If i would have listened to my original doc things would have gone completely differently and you have alot at stake here...like your little girl and the rest of your life.....find out who the doc was that made headway in your specialty, Look to the New England Journal of Medicine, look to who has submitted course studies for other docs, get referrals from the top dogs in the field...do not short change yourself or your daughter and then when everything else has been axhausted then sit down and seriously think about the implant....at some stage in all of our lives pacemakers will be antiquated its not that i am against pacemakers at all because as we know they save lives but exhaust all other options...get pro active in your search for another way if possible...good luck to you.....

[Mom2four85]

if you have neurocardiogenic components which could be autonomic nervous systems problems and I'm reading your post correctly, then you have a double whammy like me.  Some of what you've described, I've gone through and had to have a tilt table test and an RF ablation then cardiac mri to rule out genetic heart stuff then a catherization to check the arteries before I had a pacemaker/icd implanted

I'm a member of an pm/icd board http://www.icdsupportgroup.org/board/ that has alot of useful info for just about any condition associated with the needs of a pm/icd and might be useful for you to find info on needing your pm/icd - there's people of all ages and stages of life there