Info on experience with AV Node Ablation with Pacemaker dependency.

Posted by bhb30602 @bhb30602, Oct 8, 2023

Hello everyone and thanks in advance for any info you can share regarding this procedure and what life is like afterwards.
I am 67 yrs, just retired, and have been dealing with afib for 10-15 yrs. I've been treated with different meds all having varying degrees of success but in 2015, it was discovered I have a bicuspid heart valve. I had an open chest procedure in 2016 where the aortic bicuspid valve was repaired, an aortic stenosis removed, and a maze procedure was performed at that time. I recovered well and returned to work and normal activity. The afib continued on and off since all of this started and I've had a few ablations, a few cardioversions (the latest 2 weeks ago), and my flutter and afib has returned.
My cardio specialist (EPS) has mentioned the AV Node ablation with pacemaker dependency as the remaining option but it sounds really scary and so "final". The idea of not taking so many meds is appealing however, as is not having to deal with the afib/flutter any longer.
Any info would be much appreciated! My biggest fear is over the reliability of the pacemaker, not being able to walk 3-5 miles p/day or swim laps, or play tennis or pickleball.
My apologies for this epistle and appreciate any info or resources you can share or direct me to!
BB

Interested in more discussions like this? Go to the Heart Rhythm Conditions Support Group.

While I understand your concerns, I am curious as to why you think you won’t be able to do the activities that you stated.
I know that most folks I know with a device don’t have much, if any problems with continuing the life they led pre-device.
You may be required to avoid certain things like magnets and such, but it sounds a heck of a lot worse than it is in my opinion.
I am 45 years old with an ICD that I am 99% reliant on and I have put in over 20,000 steps on a frequent basis with zero problems. I obviously didn’t accomplish this right after my procedure, but with some work at recovery, it should be well within reach for an active individual like you describe yourself.
Avoid losing too many electrolytes or directly hitting the device with something while playing ball/exercising and I would think you should be fine.
I have returned to doing most everything I was doing before my device, but there are a few exceptions. Just listen to what your body tells you.

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Thank you Irishpeaks for responding and sharing info.
Google searches I've made don't seem to make a big deal out of the procedure or provide a lot of info about life afterwards. Maybe I'm overthinking it, a tendency I have, or perhaps I'm comparing to the 2016 procedure I had which was a big deal.
If you don't mind me asking, how long ago was your ICD implanted and did you stay in the hospital overnight? Do electrolytes play a different or larger role in folks with ICD's?
Thanks again.
BB

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I'm almost 65 and I LOVE my pacemaker. I'm about 60-70% dependent and have a lot of comorbidities that keep me from being active at this time, but I've had my pacer for 16 years and I was able to do anything that I wanted to during the first 10 years - swim, bike, hike, anything. I can't see that being 100% dependent would be much different, but those who are will hopefully address your question also. The pacer will adjust to your level of activity. Best of luck - I think, after all that you have gone through already, getting a pacer would be much easier. 🙂

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Do it … I had a pacemaker and av ablation in may . I’m 66 and I go to the gym 3 x a week and I have energy . It feels great not to feel like something is going to jump out of my chest . 5 years AF . But can I relate to the final decision and being dependent on a pacemaker . I was wondering if I should be doing it till I was in the room for the procedure . I have my life back . And I’m down one med . And no more ablations and cardioversions . It’s your choice and I will be thinking of you because it’s not an easy one . Take care Tara

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@bhb30602

Thank you Irishpeaks for responding and sharing info.
Google searches I've made don't seem to make a big deal out of the procedure or provide a lot of info about life afterwards. Maybe I'm overthinking it, a tendency I have, or perhaps I'm comparing to the 2016 procedure I had which was a big deal.
If you don't mind me asking, how long ago was your ICD implanted and did you stay in the hospital overnight? Do electrolytes play a different or larger role in folks with ICD's?
Thanks again.
BB

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I can't comment on ablation but I completely agree with almer. I have had a pacemaker since 2022 (Sept). In the year I have had it, I too have returned to the gym 3X a week for lifting, balance and agility. If you have bradycardia like me, it gives you your life back. At first, I was really worried about it, afraid to do anything, touch anything, or go anywhere as I was worried about all the things that could go wrong. It is natural to be afraid and cautious. It takes time and returning slowly to regain your confidence. As well as the gym, there is yoga and pilates. I am 76 years old. I too am an overthinker. The procedure was relatively short. I was sedated and not anaesticized and actually found it interesting. I have a Medtronic. They have an excellent website for patients, and a help line to call for any question (there are no dumb questions). Keep us posted on your progress.

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Thanks everyone for sharing information. I greatly appreciate the time and concern.
I see my doctor this afternoon so I will know next steps soon. What I didn't include in my intro was that the pacemaker is needed to regulate my heartbeat bc it is too fast. I don't think that makes any difference really but wanted to clarify. (usually around upper 50's/mid 60's beats per minute but it's been 100-107 just before my cardioversion (3 weeks ago) and after 5 days of being back in the 50-60 bpm range, it's returned to the 100-107 range.)
Have a great day and be safe,
BB

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In the spirit of follow-up and posting info that others may be wondering about or unaware of... I met with my Cardio EPS doctor this afternoon. He wants to try another ablation but this time it's one I've not heard of before: "Vein of Marshall alcohol injection". It seems to have greater success for patients like me and the vein of Marshall is external to the heart and difficult to get to. In addition to the incision in the groin, there is also an incision made in the neck to reach the Marshall vein. It's still an outpatient procedure but under general anesthesia. If this isn't successful then it's the original option for me, both of which I'm grateful for.
I plan to post on my status to help keep us all informed of options.
Thanks again everyone.
BB

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@bhb30602

Thank you Irishpeaks for responding and sharing info.
Google searches I've made don't seem to make a big deal out of the procedure or provide a lot of info about life afterwards. Maybe I'm overthinking it, a tendency I have, or perhaps I'm comparing to the 2016 procedure I had which was a big deal.
If you don't mind me asking, how long ago was your ICD implanted and did you stay in the hospital overnight? Do electrolytes play a different or larger role in folks with ICD's?
Thanks again.
BB

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I’ve had my ICD for 2 years now. When it was implanted I stayed for a total of 7 days. This was due to the tachycardia that I was fighting at the time, not because of the procedure itself. Each case varies, but I would imagine that a pacemaker procedure with no complications has a fairly quick turnaround time.
As far as the electrolytes go for myself, I have been told by every doctor that I’ve seen that keeping my electrolytes balanced is a big part of my heart health. Potassium and magnesium are the most important, but I need to replenish most anything lost while working.
I think this is the general rule for most heart health care, but can certainly differ among folks.
The biggest thing that I had to overcome was the fact that there is now something foreign in my chest. It takes a bit, but eventually you’ll forget it is there and continue on with your life as you were before.
I have no regrets about having mine, and have honestly found very few limitations because of it.
Overthinking is just part of being concerned, it’s natural. It’ll be done before you know it, and you’ll be back in action.

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Just recently was told by my Dr that a pacemaker only treats slow heart beats , such as in heart block , it does not correct tachycardia or a fast heart rate , that's why AFIB & tachycardia can’t be controlled by a pacemaker alone , they have to zap your AV node and let the Pacemaker take over the regulation of your heartbeat completely .
I chose to have a second ablation , in hopes that I won’t need the pacemaker with that AV node ablation. My procedure will be done on the 27th !
Also I discovered when I was in the ER that my magnesium levels were low , I started taking Magnesium Tarate and I’m doing much better .👍🏼
Sure hope this explains why you would need a dependency pacemaker. Thoughts and prayers for you . ♥️🙏🏼

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@bhb30602

In the spirit of follow-up and posting info that others may be wondering about or unaware of... I met with my Cardio EPS doctor this afternoon. He wants to try another ablation but this time it's one I've not heard of before: "Vein of Marshall alcohol injection". It seems to have greater success for patients like me and the vein of Marshall is external to the heart and difficult to get to. In addition to the incision in the groin, there is also an incision made in the neck to reach the Marshall vein. It's still an outpatient procedure but under general anesthesia. If this isn't successful then it's the original option for me, both of which I'm grateful for.
I plan to post on my status to help keep us all informed of options.
Thanks again everyone.
BB

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Sounds very encouraging.
Keep us posted please . Nora

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