Has anyone taken part in a research project or have any experience of standard catheter ablation for AF versus ablation of the nerve endings (ganglionated plexi)? Or have any thoughts about this?
My 4th catheter ablation was last Friday so 6 days ago now at Hammersmith hospital. I took part in a blinded research project where they won't tell you if you've had the standard procedure or a more extensive ablation of the nerve endings (ganglionated plexi) of the heart (after 12 months they can tell you).
This is the second time I have taken part in the project. It turns out last time I had just the standard procedure plus the extensive mapping but no ablation of nerve endings.
I suspect I've had the full monty this time as the recovery has been harder - discomfort in my chest that I haven't had before and then (probably as a result of the anaesthetic) wheezing and crackly breathing which I have never known before but turned out to be a chest infection.
The worst of it for me as the patient is I'm in continuous AF since the fourth day following the procedure. Feeling worse than before I went in when I had it down to a couple of hours a day. As with any research project it's a step into the unknown and I knew the risks.
I don't know if there is anyone out there who has had an ablation of the nerve endings who could share their experience?
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Suzanne-Cheshire
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We did have two forum members who had the procedure done in a trial by Dr Sabine Ernst about 3 years ago at Brompton if I remember correctly. I think both have left the forum but if you type key words such as Sabine Ernst and ganglionated plexi into the search box on the top right, it may throw up some more info.
This forum would be the only place where anyone who had had the procedure would post. I asked on this forum if anyone had had ethanol infusion of the vein of Marshal for peri-mitral atrial flutter (which I had ) and no one responded.
Ganglionated plexi ablation had been around for some time. In my brief research, this current 2020 scholarly article summarizes past results:
The current buzz is Pulsed Field Ablation which is still in the trial stage. ( Kindly note, I am not saying you are not also current. Ganglion Plexi ablation certainly must have advanced from when first initiated)
Six days is so early in recovery. May you get fantastic results.
Hello, after my last ablation 7 weeks ago, I too have been told that my atypical atrial flutter stems from the Vein of Marshall. They were unable to fix it in the ablation. I am not in flutter all the time but when I am it is terrible. I am now on the rhythm drug Tikosyn to see if that will keep me in NSR. One EP indicated said that the ethanol infusion was an option for me in the future. But another EP felt that the treatment wasn’t successful enough and the two disagree. I tried looking for any posts anywhere from others with diagnosis without finding any! I would love to know what you have discovered and how you are doing! Hope you are well.
I would agree with the former EP. My second ablation in Bordeaux was for peri-mitral atrial flutter ( as well as the reconnection of my right superior pulmonary vein) on Nov. 20, 2017. At that time, the hospital Haute-Leveque had been doing the procedure for four months.
Dr. Jais and Dr. Hocini from Haute -Leveque have been my EPs. I have found that there is little layman information for ethanol infusion of the vein of Marshall and that you need a skilled operator for the procedure to be successful. Dr. Jais had given a paper at the AF January symposium either in 2018 0r 2019, but I could not find any paper online. There does not seem to be statistics on the success of ethanol infusion of the vein of Marshall that is readily available. However this 2020 article may be of use to you since it does conclude that the ethanol infusion of the vein of Mashall had a greater success rate.
My peri-mitral atrial flutter ablation I feel was very successful because it has not come back. Furthermore, the procedure was very short , about an hour which also included the ablating of the reconnected superior right pulmonary vein.
I am doing very well and grateful to be in sinus rhythm.
I would be pleased to answer any further questions.
Thank you very much for sharing your information. It is encouraging to me, as it might be a procedure I will need in the future, and it does sound like it can be very effective. It has been almost 3 years for you and I would definitely call that successful. I am wondering if you are on any medications now? Thanks again!
I am still on the rhythm control drug Propafenone 150 x 2 daily. It is almost three years since the peri-mitral atrial flutter ablation. So, I consider that part successful. However, I had a third ablation on May 27, 2019 for atrial flutter in the right atrium and to address the right superior pulmonary vein which for the third time didn't want to be ablated. So I believe I am still on a drug due to that issue. But, the dosage has been reduced from 300 x 2. My age and that right superior pulmonary vein , may not have been totally ablated which may be the reason for still needing the drug.I as one of the most complicated cases at the six month stage. I am aiming to be off Propafenone. I am actually one year and 5 months sinus rhythm since third ablation.
Thank you for your response. I think I understand now that with your second ablation you had the vein of Marshall ethanol infusion for the peri-mitral atrial flutter, which has been successful. And then a third ablation to address the right superior pulmonary vein.
I am also aiming to be off medication (Tikosyn), and I believe an ablation with the ethanol infusion treatment of the vein of Marshall, at this point at least, is my only hope. Was it much of an ordeal? I am glad yours seems successful. Thank you.
It was no ordeal at all. The actual ablation for ethanol infusion of the vein of Marshall plus re-ablation of the right superior pulmonary vein that had reconnected took one hour, set-up time another hour, for a total of two hours. It felt as if I had had no ablation at all. There was hardly any bruising at the groin entry point.
My right superior pulmonary vein has been ablated in all three ablations. It reconnected after the first and second ablation, and in the third ablation, it was refusing to ablate. I was told they had to do a cardioversion for the third ablation, but unfortunately I forgot to ask for more details. The. procedure, as stated, was in Bordeaux and I am now back in Canada.
The third ablation again addressed the right superior pulmonary vein plus right atrial flutter.
Thank you for taking the time to respond. It really is wonderful to exchange thoughts and experiences with others on this forum. Everyone is very helpful and kind.
I am encouraged by your experiences. I would love to to hear how you get on, and am wishing you the very best of luck in the future.
Thank you for sending that link. It looks promising. I will be discussing this with my EP at the Cleveland Clinic first week of December. Hope you stay well.
Ethanol infusion of the vein of Marshall solved my peri-mitral atrial flutter. Too bad they didn't do that in the first place, but they would have had their reasons.
I’m wondering now if that is the type of flutter I have, that they weren’t able to stop completely. I was just told it was “atypical”. In the left atrium. I did hear the term “mitral”, which I took to mean the area around the mitral valve was ablated. Have lots of questions for this follow up appointment. Thank you again.
I believe that's correct. It's not an easy flutter to ablate. Mine was done in November 2017, and at that time, the Bordeaux group had been using the technique for only four months.
Thank you. Very interesting reading. I will be seeing my EP in a few weeks and will ask how this case compares to mine. I don’t yet have a real concept of my prospects of becoming free of any arrhythmia without drugs, but that is my hope. As I’m sure it is for everyone! May I ask how are you tolerating the Propafenone? Will you be able to stop that medication at some point?
In the beginning, I had the usual side effects such as metallic taste. My original dose was 300 mg x 2 . I tried to stop completely at about the ninth month stage but went into arrhythmia six days later. A few months after that I emailed my Bordeaux EP who suggested that I could take 150mg in the morning but keep the 300mg at night because my arrhythmia occurred at night.
I did that until recently when I noted that Propafenone appeared to be having the same effect on me as when I was taking Amiodarone -- decreasing my GFR. Flecainide did not cause a decreased GFR. I now have stopped taking the 300 mg at night and also reduced it to 150 mg. My goal is still to get off Propafenone.
The other side effect is Bradycardia. The 150mg x 2 is keeping the rate in the normal range whereas higher dose and I am in Bradycardia.
I am supposed to get an appointment with an internist because I also take blood pressure meds. I have a sneaky suspicion that both Amiodarone and Propafenone also caused my blood pressure to go up but I need to fully chart my meds to get a better picture.
It's a balancing act.
Maybe you can pm me privately. I'm interested to know how you get along.
Thanks for posting that link which is an informative read and your positive wishes! I haven't found much info on outcomes from my own googling but this explains a lot.
Day 12 and suddenly back in sinus rhythm so not all doom and gloom after all. I can't seem to find any posts by others who have had ablation of the nerve endings!
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