My pacemaker was inserted three weeks ago for symptomatic persistent a-fib that no longer responds to meds, cardioversion, or ablation. I had to wait for the AVN ablation since I am sensitive to silicone and the pacemaker parts are coated with it. I haven't had any rejection symptoms therefore my AV node ablation is scheduled to go forward this coming Tuesday. It can't come soon enough!
I am having symptoms of Heart Failure and it is effecting my quality of life aside from causing discomfort, extreme shortness of breath, fluid distention of the abdomen and swollen feet and legs, as well as lack of sleep.
Has anyone experienced if the AV node ablation improves these symptoms?
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Heartbeat2022
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Very interested in the fact that you have a silicone allergy yet you have not had an issue so far.
I have been told I need a pacemaker but have refused so far because I have had terrible allergic reactions to heart monitors, ecg pads, cardioversion pads and any of the components of these articles they use.
I and my EP have asked for a test to be done on the components of a pacemaker but so far after 3 years they have not been able to collect together everything.
I just do not want to make that monumental decision without some assurances.
I have never had silicone implanted before now and only reacted with it on my skin, my EP says internally it reacts differently. I am extremely grateful we can now proceed with the AV node ablation.
It is a good idea to consider the components of the pacemaker before proceeding.
I just saw this and I’m wondering what did you end up doing? The reason I ask is because upon speaking with the tech for my pacemaker, I brought up someone on here who has allergies to titanium it because of that has had horrendous feelings and replacement of pacemakers and worse, and right now has no pacemaker rather than go through more hell. Her doctor refuses to get into the allergy discussion. I don’t know how he can even be a doctor like that and now she has no pacemaker? Anyway, I wondered what you ended up with because when I was talking about the situation I just told you about I was told they make a gold pacemaker. I know it sounds like a joke. How about having a heart of gold? But this is very real because obviously they know people have allergies and yet they need this life-saving device and others like it. I hope you have gotten more help by now but if not, maybe some thing like this can help you. I know what it’s like to be stuck between a rock and a hard place although I didn’t know what is the time. My new pacemaker is relatively new, and before this, it was not a pacemaker to help me. When my doctor told me it was special I thought he was being silly but in the past month, I am learning more and more. My doctor just presented my case in Dallas and they have asked him to teach the procedure there to the EPS so that they can help others like me
I am just a wealth of little snippets of information at times lol but sometimes it helps someone so it’s all good.
I finally had the components of a typical pacemaker tested for any allergic reaction and the results were negative which is good should I ever decide to accept a pacemaker.
At present I am still resisting a pacemaker.
I had a telephone discussion with my EP about 8 weeks ago and he understands why I am reluctant but he does feel that it would help with my Bradycardia. He said that should I have a reaction despite the tests he could remove it as long as it was removed in the first year after implantation. After that the components and wires tend to get embedded into the human flesh and it makes it more difficult to remove. I guess they have to eventually if the patient lives long enough to replace the batteries.
I am 76 in a few weeks time and to be honest the longer I can leave it the happier I shall be albeit I do have issues being short of breath when walking for any amount of time.
I had read that you can be fitted with a gold pacemaker but as they could not find any allergic reaction to the standard version I think they will not be prepared to do this for me.
I have a face to face appointment with the EP in July and in the meantime will get another ECG (EEG) and an echo scan done so that he can see how I am. It is now 3 years since I have had any tests or face to face appointments due to the Covid pandemic.
Hope your pacemaker continues to be good for you and thank you for your message it is much appreciated.
if you are comfortable enough without it, I can understand. I had tachycardia in the 150s and just started heart failure sometime after the end of December I think. The doctor said my heart and I had both had enough. That is why I needed the pacemaker and the AV node ablation. It was the prolong time of the high heart rate that caused the failure. I have no other heart issues, and it is not congestive heart failure. As far as the body taking hold. Yes, it builds a cocoon of sorts over something that it considers a foreign body such as the lead. I knew this previously because my daughter had a needle left inside of her during surgery, and it was more invasive to try to remove it. That’s when they explained the cocoon. With a pacemaker unless there’s a problem with your leads, they will not be touched when you need a battery change. Right now according to my pacemaker, it could be 13 years before I need one replaced. It is amazing what they can do. I just had my loop recorder removed. They took it out the same way it went and I have the same scar so I was pretty impressed. Only you can decide what you want to live with . If the symptoms right now are not that bad, I fully understand your viewpoint. For me, it was the way to go and I am finally starting to feel better in fact yesterday I had a fabulous day. It can take up to six months to fully heal , but that’s from the ablation. A fib is not an issue now it’s been blocked out with the AV node ablation. My heart rate was lowered Wednesday down to 70 they started at 80 which was a big drop for me from the 150s. The final goal will be 60 which is what they consider the best to have at rest. It felt good when I got home Wednesday that my heart was very quiet probably the way a heart should be. I’ve been living with thumping and palpitations and more including the pain for so long. I forgot what normal could be but it sure feels good.
I will be 71 I’m not ready to stay in my rocking chair yet lol in my head I’m 35 lol well I was I’m hoping to get back there the past year has been tiring to say the least.
please let me know how you’re doing. Just be good to yourself and be happy.
The pacemaker was inserted and I had to wait to see if my body would reject it because of the silicone coating. I was in heart failure with my kidneys and liver function affected. Unfortunately I was in bad shape by the time the a-v node ablation was performed. I bounced back in about 3 months and was able to increased my activity level to close to pre pace and ablate.
Thank you for your reply. I had seen there was a possibility of a cold coated pacemaker…..heart of gold!😁
Hi - I was hoping that someone would respond soon to your query and all I can say is that may be because the people for whom it helped may not remain on the forum.
I had PM fitted in 2018 in preparation for AV node ablation but the PM alone improved my symptoms and QOL so much I didn’t go ahead with the AV node ablation but that could have been because I had the implant prior to Heart Failure as my EP wanted to prevent that as he could see signs that was starting to happen. I do hope it helps you but it may take a little while.
I know this is an older post but it’s good to see you mention improvement of heart failure. Without picking up the phone and asking my doctor or his assistant you just confirmed what I thought I had heard. I am having an echo done next month to see where my heart failure stands at this point. It had just started I wonder if it was the reason my cardioversion Christmas week had failed even with three shocks. It was after that that we spoke of the pacemaker. Dr. wanted me to try digoxin for a month then we would sit down and plan things out. In reality he was way ahead of the game thankfully and continues to be so. The digoxin failed twice in the month was doubled the first time then failed again two weeks at a time. Anyway, I’m not 100% and there is the possibility that my heart failure is causing a little bit of a problem and they are meds for that. I actually take three of the meds they use although I take them for different things. If needed I believe my medication is going to be changed because my EP said there are new and better medication’s now. He is always thinking outside the box and has the answers before the questions come up,. I am so grateful to have this doctor in my life. And when I asked if I would feel better when the pacemaker was fitted he told me probably not I might even possibly feel worse. I didn’t feel worse I have a feeling he meant just the soreness, etc. that goes with the implant plus I had my loop recorder removed at the same time. The AV node apparently makes all the difference. Today was one of the best days I have had so far it’s 1 foot in front of the other one day at a time I know but all I have to do is look in the mirror and see color in my cheeks and lips and then be able to walk down the hall and I feel happy and grateful
Sending healing, thoughts and prayers to help you with your heart failure and I’m hoping my echo shows that it hasn’t gone any further, if nothing else. Please let me know how you’re doing now.
Good morning, I had a pacemaker and AV node ablation 2021 after a couple of years of AF and medication. I am now back to my normal activities, including golf, without any symptoms of breathlessness or fatigue. The only medication now is Apixaban a blood thinner to avoid blood clots. Other meds too for other issues
It is good to hear you are back to normal activities without symptoms, how long did it take before you were able to resume normal activities without breathlessness or fatigue?
Hi, yes it was pretty quick and built up over a few weeks. It was more coming to believe that i could return to normal activities, so in all I would say 6 to 12 months.
The pacemaker won't stop the afib, it will still be present even after the AV node ablation. The pacemaker controls the rate and you may not feel the afib. i will let you after the AV ablation is done this week.
There is some thing for everyone here, even though we are all different. Just know that you are not alone regardless of the type of a fib that we deal we can empathize and some parts of it is the same for all of us so when your family doesn’t get it, you have people here that understand. I cannot believe how close I feel with people here.
If you are having signs of heart failure they may intend to fit a 3 lead( dual chamber ) pacemaker and then that should improve your symptoms I think. I am sure someone else would know more about this. X
I had a bi-ventricular pacemaker inserted and will have the AV node ablation to improve ventricular function and ejection fraction. It is scary because the procedure is not reversible and I will be 100% pacemaker dependent. Unfortunately nothing has improved since the pacemaker insertion, I was trying to see if others noticed an improvement after the AV node ablation.
Ah ok I understand now. I know it is scary to be 100 percent pacemaker dependent but I think it is more a psychological thing as pacemakers are very dependable. I think you will notice more benefit when your pulse is regular which should happen after the AV node ablation. However from what others have said, it might take several months of tweaking before you feel much better. I hope all goes well for you. X
again I know this post is very old. I hope you know by now that the AV node ablation should’ve made a big difference. What you mentioned about being dependent is what scared me as well. Lol my new pacemaker has a safety switch. I’m laughing because I had my first follow up the other day and it turned out that someone left the switch on. The switch is there in the event that during monitoring of me a problem pops up. It’s my back up, so even though we are 100% dependent we have help built in. it’s possible you could’ve used the type of pacemaker I have, which is relatively new. The biventricular would not help me if this hadn’t become available when I did I would just continue in heart failure. My AP has actually been invited to Dallas to teach the people EPS there so that they can use the procedure on more people after he presented my case to them at whatever he was attending. I have a to lead with HIS pace bundling. It is Bluetooth enabled and the monitor may 24 seven and also I have a hotline 24 seven. If something is not right, they contact me and asked me to send a transmission right from my phone. I’m laying here shaking my head, thinking about how amazing this is and how blessed I was to find the doctor that I have.
If going forward they ever need to make a change for you regarding a pacemaker, which I hope they don’t, please keep this in mind. I when I have my echo, we could also see if it helped with my heart failure. I just had my AV node done on 27 February so he is trying to give it all a chance to give my heart a rest before the echo. I think he said some thing about values or variables. All I know is he was really excited over my EKG much more than I was.
I hope you have gone a long way and a positive manner since this post from you
Hello, I’ve also had a Pace and Ablate and don’t regret it for one second. I also had signs of early heart failure and after having the Pacemaker June 2021 didn’t notice any difference at all. My AV node was a long wait due to Covid and was in Dec 21. I immediately noticed the difference and am grateful to have had this option. Good luck with your ablation.
I was advised to do pace and ablate in February after two failed ablations in June 2020 and January 2021. I said I wasn’t mentally emotionally prepared to do so and requested an echo cardiogram and had one done June 2. I’ve had similar symptoms as you and assumed it was heart failure. turns out I do have mod left ventricle hypertrophy/sti ffening And pulmonary hypertension. My primary referred me to a pulmonologist a month ago and I was diagnosed with pulmonary hypertension and I am now on oxygen 24 seven and Lasix diuretics and an inhaler. I imagine they would’ve done the echo for you by now. Mine showed pH back in 2020, but I did not go to a pulmonologist and I wish I had. They are postponing another third ablation or pace and ablate. unfortunately pulmonary hypertension is overlooked and not diagnosed because symptoms can be so similar to heart failure and it is a heart and lung disease. i’ve been doing so much reading about it and heart failure etc. I’ve also read that many people have the pacemaker inserted but don’t go ahead with the AV node ablation. Yes it is a huge decision… I wish you the best. Whoever said that getting old was our golden years was full of crap… LOL
The oxygen is due to pulmonary hypertension levels, risks and symptoms. I can’t really say there’s a big noticeable difference since symptoms come and go and some days are better than others, but there is some.
The Lasix definitely helps breathing and I feel better because I’ve had terrible upper abdominal bloating and uncomfortable breathing with it.
You say that you have heart failure and a lot of bloating in legs and feet. Are you not on a diarrhetic??
if not they should’ve been treating you for that in my opinion It sounds like you have all the typical heart failure symptoms as you said….
obviously it’s up to your doctor, but for me the pace AND ablate were both needed. The pacemaker really did nothing until the AV node was done. I had asked my doctor ahead of time what I feel better when we were doing just the pacemaker first. He was very honest and said probably not if anything, you may not feel as good as you do now. I was OK I didn’t feel worse other than where the incision was. Two weeks later I had my AV node ablated. Even in the recovery room when they were checking everything looked better. I didn’t feel worse I may have felt better just sore again. My heart rate was set at 80. I had been living with a heart rate in the 150s. So 80 was really good for me. I was set to 70 on Wednesday and I think today I felt the best yet. After my echo next month the hope is to get me down to 60 for a heart rate. One thing that was explained to me I did not know earlier is that 60 is the preferred heart rate for when we are sleeping. I did not realize my pacemaker anticipates activity and my heart rate will go up just like anyone else with a heart. The things we learn lol when I came home with my pacemaker and my heart rate was up I was afraid not realizing that’s what your heart does. It goes up if you’re active. I thought I was supposed to stay at whatever they set me at. In case there are others out there that didn’t know either. Make sure you ask questions. It will take the fear away when you understand.
as far as skipping the AV node ablation, the point of it is blocking off the natural pacemaker that is giving the wrong directions to your heart. That is what put me into heart failure. My heart became exhausted. I don’t have congestive heart failure that’s different. If you don’t have the AV node done, then a fib is going to continue giving crazy directions to your heart. That’s my explanation not medical terms lol. By blocking it off, your pacemaker is in charge and will have your heart doing the right stuff.
I had a pacemaker implanted one month ago and 12 days later they did the AV node ablation. My heart does feel calmer but one lead is affecting my diaphragm and making it feel like there is a thump in my back when I lay down.. I have a three lead pacemaker. They said they can fix that with different settings so I'm hoping to see positive results from that. I had uncontrolled atrial tachycardia and palpitations so it might be handled different than Afib. My sister had a pacemaker and ablation for Afib and felt better right afterwards. I hope that you get the same results.
I had the level of symptoms you are describing for HF and had a gap between CRT-P being inserted and node ablation.
It was hard the time between as you know you are nearly there but so far from feeling better and still have the awful symptoms. My kidneys and liver were also giving me problems as a result.
When they did the node ablation they said there was no guarantee in improvements but I think that is a cover for them and to manage expectations.
I did feel better after the ablation and my HF symptoms have got so much better.
No longer do I have feet like footballs or liver or kidney problems. Their function is back into normal parameters.
I list nearly 2.5 stone in weight over the initial weeks afterwards as fluid was released from my body.
Shortness of breath massively improved and I can function in everyday life normally. I do get some SOB still at times but it might be when bending to do shoelaces or if I have had a lot of salt or carbs in my diet. I still weigh each day to check what is happening - as advised by HF nurse and to them I am no longer considered technically HF although to GP I am stage2/3 still. But I think that is just for monitoring me.
It took awhile, but yes, the symptoms improved massively and I can lead a more less normal life and am very happy.
Thank you for sharing, it is very helpful and reassuring to know the symptoms improve and life can continue more normally with the pacemaker after AV node ablation.
i have also experienced HF with AF/flutter PM in Dec AV node ablation Feb, mid April my BNP was 891 EF22 pretty depressed. After final setting of pacemaker now130/60 I started to notice a difference. By end of May I was golfing 18holes with a cart last blood work BNP down to 186 do not know my EF but feel it has improved, I am still on all my meds but hope that changes, The best I can tell you is do not rush it expect around 3 months before a big improvement if you are like me. after3 months your QOL will greatly improve, As far as being pacemaker dependent I do not think about it as long as my QOL is good the rest doesn't matter, I hope you are as happy after as I am Les
The AV ablation went well yesterday, I went home several hours after the procedure and even though I was very tired and my legs and feet still filled with fluid, I rested easily as well as slept throughout some of the night. The fluid in my legs, feet and abdomen is still attributing to my shortness of breath even with my pacemaker rate is set at 80 bpm. The shortness of breath isn’t as severe as before the procedure yet it will make carrying out normal activities challenging. I am hoping for a rate response adjustment with the pacemaker setting at a range between 65 and 120 to correspond with normal activities and exercise. For now, I am still on a diuretic, beta-blocker and blood thinner. I look forward to having the swelling and shortness of breath subside and can say it is comforting to have my heart feel calmer.
Thank you for sharing your experience and helping me through this process!
It is almost a month since my AV node ablation and the swelling and shortness of breath have subsided. My pacemaker is currently set to rate response with a range of 80-130. I recently started riding my bike again taking it slow for now until I build my stamina back up. I am feeling much better and except for tiring easily I feel great!
My appointment with the EP cardiology doctor is in a week and I hope to have the diuretic and beta blocker doses decreased or cancelled. I will need to remain on the blood thinner I am currently taking since the a-fib is still present and the possibility of a stroke remains.
I am doing much better, my activity level and stamina have significantly improved. It took a couple months after the ablation to get my stamina back up, I am able to easily ride my bike and exercise.
I had all of mine done in February. I did not expect much until the AV node is done because the point is it is to block the natural pacemaker which is what is causing our problems. I had my pacemaker fitted February 13. I asked the doctor if I would feel better he told me probably not. I might even feel worse. That was just because of the soreness putting the pacemaker in. Yes, the AV node makes all the difference. Your pacemaker will be in charge and your heart will finally get rest. I am getting an echo next month. My doctor is hoping to see that my heart failure is being helped by the pacemaker did you know that’s possible? It can get better he wants about a month of the pacemaker really working before he checks. If it does not get better, he said they’re a new and better medication’s now. FYI I have been on losartan, Jardiance and metropolol anyway, I did not know they treated heart failure. Whatever the numbers are that he is checking will decide whether or not he puts me on new medication’s. I had asked him. How are you treat heart failure. I want you to know I have absolutely no regrets and I think the pacemaker was the best thing I could’ve done. I was not in favor of it but people here talked about it positively and I listened. Six weeks ago to get off the couch and try to walk was impossible. Let me tell you how normal I feel right now as I’m smiling while I write you.
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