Options

Haven't posted in a while but now looking at some options. I really don't know where I stand right now and probably won't until I see my cardio again next week. My afib is back and I'm actually running out of options available to me. As some know already I have a PM for SSS, I've had an ablation for A-fib once before and have also had open heart surgery Maze procedure to correct it. was actually taken off all drugs until last December when it started acting up again, then went for the next 3-5 months trying to figure out why i was having so much trouble GP saying it was heart EP saying it wasn't etc and me caught in the middle of it all with no explanations. started teating an Asthma flare up and became slightly better but just sucking it up and living with it. Thanksgiving night landed in the ER because I couldn't breath and other issues. Long story short Afib was back the atrial pacing settings were working to pace me out but my heart was beating out of sync. Right now they've got me on Amiodarone which I hear is nasty stuff (but all the other antirhythmics I either have already tried or can't take) and metoprolol plus elliquis which seem to be helping although I'm still having some issues. My question is they mentioned that they might have to go in and burn the wiring thru ablation (which i've had before) and do it so I would be totally dependent on PM for survival I guess that means either sinus node ablation or av ablation or both?? what are the consequenses of that if they end up doing it vs the long term effects from the amiodarone?? they told me that the issue of  it may not work (well not much has long term) and that if anything happened with the PM i'd be dead. Right now it's hard to do anykind of phyiscal activity such as excersising long walks etc. for any length of time. sometimes even walking across a parking lot or my house can be a challenge although things are better since Thanksgiving. any ideas or feedbacks?? and I apologize for the long vent. . 

3 Comments

none

by kmom - 2016-12-19 17:23:07

Angry Sparrow--Thank you for your kind comments--I did want to clarify something however--and that is the comment about being dead if something happened to my pacemaker--that is ONLY if I get the procedure they were talking about (Burning off the nodes in my heart that direct the signals so I am totally 100% dependent on the pacemaker) I am not right now paced at 100% or even close to it. I'm not really sure what would happen if they did burn all the "wiring" that's sending the crazy signals and i'm not sure if they were talking about AV node, Sinus Node or both?? I see my EP next week and I will see what he needs to do. I think I also may have mentioned in the post that my insurance will be changing at the beginning of the year so I may have to see another EP that's in the insurance--actually I think he may be but the hospital is not so maybe they'll  have some ideas or suggestions that my old one hasn't thought of before we have to go that radical. 

AV node

by Dmb4500 - 2016-12-20 22:11:49

I would be asking if burning the AV node will reduce or eliminate your a-fib. My understanding is (via visits at Cleveland Clinic) that an AV Node ablation with a dual pacemaker installation will NOT reduce or eliminate it.  I was told it MAY "hide" the symptoms ... Some people will still feel the symptoms and some will not, but everyone does not have the same outcome. If in chronic a-fib, whether noticeable to the patient or not, the atria are still at risk of enlarging. Your case may differ as you already have the PM. I also have the a-fib/flutter, enlarged LA, beginnings of pulmonary hypertension, had Ablations, had the mini-maze (not OHS) in which left atrial appendage did not get closed off, along with various meds, and 18 cardivoversions in 2yrs,2mths. Age 46, female. Best of luck to you!! 

AV Node Ablation plus pacemaker

by Bionic Beat - 2016-12-24 17:12:46

In Jan 2008, I had the pacemaker implanted, then a couple of months later (April) they did the AV Node Ablation.  I felt better 45 minutes later.

Last November, the FDA recalled my pacemaker for sudden, unpredictable battery loss....now, that's scary when you are 100% paced.  It was replaced Dec 22, 2015.

 

In September 2016, I felt quite rotten and it was confirmed that I'd need CRT, so that pacemaker was put in two weeks ago.

 

Ive had a very good 9 yrs from this wonderous technology and am looking forward to getting in many more years of good health. 

 

My my understanding is that it doesn't 'go well' for everyone, in fact it can make the situation worse in 5% of cases.  95% do much better.

 

With the CRT, it's a 50/50 chance of improvement.  I'm sure I'll be just fine.

 

Its your decision, get all of the facts both good and not, then do whatever you have to do.  

 

Best wishes,

Bionic Beat

You know you're wired when...

You have a 25 year mortgage on your device.

Member Quotes

I am 100% pacemaker dependant and have been all my life. I try not to think about how a little metal box keeps me alive - it would drive me crazy. So I lead a very active life.