AV node ablation failure?

[Shepheart]

Hi I’m new here also. I have PAF, and SSS, I had a pacemaker put in 6 years ago. Meds do not work well for me. 2 months ago I had an AV node ablation. It seems to have failed. I’m still getting Afib generated V tach and other atrial pacing. Anyone else have a failed AV node ablation?

[bushy2016]

I too have af and sss...node ablated a month ago...i too still have af...but a lot less symptoms

[Shepheart in reply to bushy2016]

Hi bushy2016, thanks for replying. I too was told that the Ablation would not stop the Afib but it would make it less noticeable and that I would no longer be paced from the erratic atria but the implanted pacemaker would have full ‘responsibility’ for generating the heart beats. After 2 months I’m still getting high ventricle rates, some in the 140 range but most much lower but still above my setting of 60.

[bushy2016 in reply to Shepheart]

Hi same is happening to me most in the low 100s but getting up to the 160s ive been told they will load me up with beta blockers to lower the rate as the pacemaker only controls the lower heart rate and not the upper...so the pacemaker is of some benefit..but Im afraid to say its not a miracle cure..we had hoped for but life is slightly better and least I know my heart wont drop to low into the high 20s as it use too!!

[Alphakiwi in reply to Shepheart]

Sounds like the AV node ablation is not successfull. The idea i was told is the AV node no longer controls the heart rate so the PM is first implanted and that does that job.I had the pm implanted 6 months ago and have been fine for 5 months after they turned the rate sensor off. I have not needed the AV node ablated. Now on no drugs other than bloud thinner.

[CDreamer]

So sorry this happened - I’m just about to start the process - pacemaker implant today hopefully.

I rather think I saw a similar post a few months ago - try putting key words in the search box and see if anything comes up.

[bushy2016 in reply to CDreamer]

I wont say good luck..as its not luck..as you will be aware AF isnt eradicated it is just suppressed...speak soon...when your in the chosen ones!!! group

[Shepheart in reply to CDreamer]

Hi CDreamer, I hope all goes well with your procedure today. Let us know how you are doing post-op. Modern medical technology is pretty amazing.

[2564]

Hi Shepheart

I had a pacemaker fitted last October and an AV node ablation done in march.

Apart from the pacemaker stops my heart going too slowly so I no longer pass out, I don't feel any different. The hospitals attitude was basically too bad they had done all they could.

I wouldn't mind so much but the consultant promised me the earth. But hey ho try not to et it get me down

[Shepheart in reply to 2564]

Hi, 2564, sorry you are not feeling better than expected. The fact that you are no longer passing out is a great advantage to be thankful for though. You say you are not feeling any different than before, could you explain a bit about what you mean?

[2564 in reply to Shepheart]

Hi Shepheart

Obviously I had these procedures done because I have PAF. Now have had them done I can still feel my Afib which is practically constant. I also asked them at the hospital why my chest always feels as if it is being constantly being hit heavily with a hammer. The reply, Oh!

that will be the pacemaker you are feeling as it now works 100% of the time, I have that feeling 100% as well as feeling the Afib. I knew that it wouldn't stop the Afib but my consultant assured me that I would no longer be aware of it. Like you I cannot take medication it either did not work, or I had horrendous side effects. I sometimes wish that I had not listened to the Doctor's advise and had these procedures done. So I try my best to ignore it and enjoy life. You take care

[Shepheart in reply to 2564]

Hi 2564, I know the feeling of ‘buyers remorse’, I think that is fairly common. When I realized the AV node ablation didn’t work I thought ‘wow, I get to reprocess this whole thing, what am I going to do now?’. I still have the same options. I can’t continue with the meds (dizzy, spacey, tipsy walk and tired). I could try natural means and accept V tach until I die or retry the AV node ablation. I think I’ll go with the Ablation.

I am fairly thin and I feel when I am in Afib but I just mostly ignore it now. I don’t notice any difference when my pacemaker is pacing. Could your voltage settings be too high?

[2564 in reply to Shepheart]

Hi Shepheart,

I didn't realise that you could have an AV Node ablation done again. Surely they have burnt nearly all of it?

My pacemaker is set at 70,

[Shepheart in reply to 2564]

Hi 2564, I’m not sure if an AV node ablation can be redone. That’s part of why I came on here. Im hoping for more feed back and experiences of failed av node ablations. I’m waiting to hear from my cardiologist, so far, crickets.

The pacemaker technicians can adjust voltage up or down on the strength of the electrical charge to the heart beat. I wonder if yours is to high. This is separate from how many beats per minute.

[2564 in reply to Shepheart]

Thanks I did not realise that. They just told me, that it had been set at 70. I will make enquiries.

Hopefully you will soon hear from others on this great site.

[Hidden in reply to 2564]

They've probably burned less tissue than you think. This slow approach leaves more healthy tissue to ablate should you need another ablation. The slow process is frustrating as we would like to wake up totally 'fixed'. This way they don't destroy tissue unnecessarily that you may still need. Also, you said your pacemaker is set at 70?. You might do better at a different rate. Worth asking about. Finding the best rate can be frustrating as it seems to be a trial and error process. After my ablation the rate was set at 80-too high for me. Then tried 60-too low-felt tired. 70 has worked out to be my magic number. But we are all different and if I need my Xanax it's there . Hope things settle down for you. One more thing. I don't advocate taking meds unnecessarily but I have always been anxious-a type A personality if you will. My primary doctor allows me small amounts of Xanax to use occasionally when my anxiety runs away with me. When I first got my pacemaker I worried about it too much-always checking my pulse, etc. I would then be very aware of my pacemaker beating in my chest like gangbusters. If I took a small amt of xanax I calmed down and so did the pacemaker. Now I'm hardly ever aware of the pacemaker. Not advocating drugs but handling my anxiety made the pacemaker much more tolerable. Take care. irina

[Shepheart]

I read somewhere that AV node ablations are over 95% successful. I’m thinking that I must be in the 4% that aren’t. Has anyone had a second / redo and is it carried out the same way as the the first ablation?

[Hidden in reply to Shepheart]

You can have more than one ablation. If you need another one all it really means is that a little more tissue needs to be burned. It will be healthy tissue that has not been burned in a previous ablation. That's why we might be under-ablated the first time. It's kind of like losing weight. We lose a few pounds and then realize more has to go so we lose some more fat that we still have on board. Not a very good analogy but it's early here in Atlanta and I haven't had my coffee yet. LOL

[Shepheart in reply to Hidden]

I don’t know what the standard is for AVN ablations but my report said that the node was ablated for 300 seconds at 35 watts. Sounds like a pretty good zap but what do I know! Haha. Like you said everyone is different so some of it is trial and error.

I’m glad of the idea that it can be redone or the area of ablation expanded.

Enjoy your coffee now, I know I’m liking mine 🙂

[Hidden in reply to Shepheart]

Thanks. Iam and so is my brain! LOL I grew up in Miami Beach (Florida) and LOVE Cuban coffee. So my brain is probably getting a coffee jolt equal to an AV zap. 😊

[Hidden]

Hi Shepheart. I'm sorry you're not feeling well. If I could rephrase something you wrote I would say you're only 2 months out re your ablation. That is not a long time and symptoms don't get better right away. Ablated tissue needs time to heal just like healing that we can see on the outside (like our incisions.) Also I know you've seen posts from members who down the road have needed further tissue ablated. Many of us only need one ablation but if I needed further tissue ablated I would do it. Surgeons often lean on the side of ablating less sites in the first ablation so as to have more healthy tissue to work with if necessary. We can always have more sites in our heart ablated but we can't undo what has already been done. I have had a pacemaker and an ablation for almost 3 years. (I'm 74) I am now off all meds and everything is working fine. My diagnosis was also SSS (sick sinus syndrome-tachy brady syndrome) and in the beginning while I was healing I got discouraged and wondered why I put myself through it all. But over time everything healed and settled down. I am now stable, well-controlled and happy I had the "Pace and Ablate". Try to be patient, don't push yourself too hard right now and believe in the not too distant future you will feel that the surgery was worth it. So take care and if I can help with answers just let me know. Take care. irina

[Shepheart in reply to Hidden]

Hello irina1975, thank you for your nice reply. You’re right that I need to be patient and give this some time. The rate and arrythmia control meds I was taking cause me grief and I don’t want to go back on them. If I keep getting the Afib generated high rates in the ventricles that I’m occasionally having it may be suggested that I take the meds again (Diltiazem and Propafenone).

My EP was so confident that the AVN ablation would work he told me to stop the meds the very day of the procedure. The first month was excellent with the pacemaker pacing the ventricles 100%. The second month checkup had V rates up to 140 and other Afib effecting the rates of the ventricles. It seems to be getting worse as time goes on. But like you said maybe it just needs more time to settle down.

The nurse who did my pacer checkup and adjusted the rate down to 60 said she would pass the report on to the EP and he would get back to me. It’s been a week and I have heard nothing. I have another appointment in a month, I might just wait till then and hope nothing happens. I’m on rivaroxaban so I’m not concerned about stroke risk. But I don’t like those high ventricle rates.

I’m on disability which is nice, so I’ll just take it slow and easy.

[Hidden in reply to Shepheart]

I didn't like the meds either. I was able to stop right away but I have a friend who had to resume meds again-but only for a short while during the healing/recovery process. Please don't think of your procedure as a failure-just a small glitch in your journey to AF health. BobD has written some good info about the process of healing from ablation. It might be worth browsing thru the forum to find it. Just send him a post. Take care. irina

[Shepheart in reply to Hidden]

Thanks irina1975 for your response. I’ll continue to check out the resources here. It’s good to find people with whom we share some similarities with on this journey of health and aging. ☕️

[Shepheart]

Just an update here. I have had a couple of pacemaker interrogations since I first posted. This what I have learned: The AV node ablation was successful and I’m 100% pacemaker dependent. The odd arrhythmias and high rates were due to the settings not being precise. I found out that my ventricles are being paced at times with input from the atrial pacing. As long as I’m not in Afib the settings allow for signals to come from the atria via the leads somehow. This is so I can get as much atrial kick as possible. It has to with a better coordinated contraction affect of the heart. For the last month I have been feeling much better and hardly notice my heart beating. I’ve also been taking magnesium taurate, so that may be contributing to better health.

[Hidden in reply to Shepheart]

Shepheart

Thanks for the update on the pacemaker analyses. Glad to hear you are feeling so much better.

Could you tell me who did your AV node ablation? Would you recommend him/her. It seems to me that the expertise of the PM clinic team is also pretty important with 2 and 3 lead pacing, based on my own experience. I am looking at a redo PM at some point, having had the first one removed. AV node ablation would likely be some way off in my case.

[Shepheart in reply to Hidden]

Hi, oyster, I’m in Canada so my cardio team won’t be of any help to you. We also have national health coverage. I didn’t have much choice in who my EP would be. I just went with the referral in my area of residence. I had no reason to request other than who I was assigned to, so just went with the flow.

I have found that if you think you are not feeling quite right, keep calling or going to the Pacemaker Clinic until you get some satisfaction with either your results or good explanations of your condition.

Good luck with your condition and keep positive, it sure makes a difference.

[Hidden in reply to Shepheart]

Hi Shepheart.

I'm happy you're doing so much better. A -fib health really is a journey isn't it?

Also it's good to take magnesium supplements. I do-magnesium taurate or mag glycinate depending on what is available in the store and if one or the other is on sale.

Magnesium is so important for heart health and in today's world with overworked soil and chemicals sprayed on our food I don't believe we can always get the same nutrition from food our grandparents did.

I forgot to say I am in permanent a fib. Have been since my Pace and Ablate. My ablation never returned me to normal sinus rhythm-it just stabilized everything. I am doing fine with this. And only mention it in case your afib appears more frequently.

It's very possible to live in constant a-fib with our pacemakers keeping us safe and stable.

Have a good weekend in Canada.

Off topic: I love Canada-travelled there several times in my younger days- and if things don't get better here in 2020 I may move up there provided the orange toddler has not built a wall to keep you out and me in! LOL.

Take care. irina

[Shepheart]

Another Update. I had another Pacemaker/cardio checkup a couple of days ago. The cardiologist told me that the av node had healed over the past 5 months. Meaning that the ablation has failed. I’m scheduled for another in about 4 weeks. I was told if the next one failed there would be no more, I’d have to live with it the way it was.

[Hidden in reply to Shepheart]

It's me.I should have read your next post and am sorry to hear you need more surgery

I hope this will be successful and that you will comtinue to feel comfortable and stable

Please try to think of it as a part of your journey and not look at it as failure. Please keep posting how you are doing.

irina

[Shepheart in reply to Hidden]

Hi Irina, I had my second AV Node Ablation on Dec.21/18. The report said that I was already in complete heart block when on the table so apparently they mapped it out again and ablated. I guess there wasn’t much before/after comparisons to be made. So far my heart is behaving, just a few ectopic runs every so often. In three days I have a pacemaker checkup, so I should have more information after that. Thanks for your comments.

[Hidden in reply to Shepheart]

You're very welcome.

[bobbyp28 in reply to Shepheart]

So is “heart block” a good thing for you or a bad thing. ? Confused here…

[Shepheart in reply to bobbyp28]

An av node ablation causes heart block. That’s what I needed in order to have 100% pacing from the pacemaker. Otherwise I was getting erratic signals (caused by Afib) from the upper atria through the av node. * I had a second av node because the ablated area had healed up and was allowing electrical signals through at times. It’s been 5 years now and it’s all working as planned.

[cali111]

I am too awaiting a ablation six months after a pace and ablate plus a PVI. I came across your posts and wondered if you are now in a better position. I find it very difficult to get further forward and am still very breathless on exertion with no explanation I can understand except they are trying now to return me to sinus but if it isn't successful I cannot go any further. I hope you can lead me further or are you still waiting?

[Shepheart in reply to cali111]

Hi cali111,

It’s now 14 months since my last av node ablation and I think it is all set up and running as it should. I might go into Afib from time to time but I really don’t notice much nor is that a concern since the pacer is giving me a steady beat. I don’t have breathlessness and I can walk a few km fairly well. For the heart I only take the blood thinner xarelto. Hopefully I can stay off BP meds.

However I do have an issue with a feeling of brain fog and some low grade dizziness and slight imbalance but I suspect that it is not heart related, possibly something with the brain or depression. The doctor doesn’t seem to be too concerned. I just kind of accept that is life.

I hope you get sorted out and feeling better soon. I know it took a while for my heart to settle down after the av node ablation.

[cali111]

Thank you for your reply. I hope that this next ablation will help me. I know my EP is a bit baffled by my breathlessness and tries his best but after a pace & ablate and a PVI he doesn't have the answer to why I can't walk across a room without being breathless, so I am hopeful otherwise I shall have to readjust my life to take failure into account.