I had an unsuccessful cryoablation August 2017 which also unfortunately left me with a phrenic nerve injury, resulting in my right diaphragm being paralysed - therefore no air going in or out of my right lung.
I saw my EP this week who has put me on his priority list for a heat ablation. My last ablation was halted on the 4th vein because they said my phrenic nerve was floating in and out of view (at that point they didn't know they had already damaged it ) and they were fearful of damaging the nerve.
I asked the EP how they could be sure they wouldn't further damage my phrenic nerve with the heat ablation and he said because they don't go anywhere near it with heat ablations. I was always of the opinion that either ablation could involve being close to the phrenic nerve and am now very confused and dare I say feeling mistrust in my surgeon. Although in his favour he was actually mentioned in the Daily Mail this week as being one of the top heart surgeons by his colleagues. He said he will make sure that he will personally do my procedure this time and not his team as he deals with the more complex patients.
He also said because of my phrenic nerve injury he won't use a tube down the throat for my anaesthetic. I stressed that I must be totally asleep for the procedure as I would be too anxious otherwise and he promised me I would. Also regarding the phrenic nerve injury at first he said it would heal in a few weeks, it didn't, then when I saw him again he said within a year - now he is saying two years!
I'm just wondering what other people think. I am so unsure of having the procedure done but feel I between a rock and a hard place as I get very debilitating episode of AF every 6 days lasting for 2 /3 days at a time and life is just so miserable during these episodes. In between I feel absolutely fine.
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Surreyhunni
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I believe that radio frequency ablation is more precise than cryoablation. If as you suggest it is to take place at one of the centres of excellence they will almost certainly be using 3D mapping which enables a more precise targeting of the catheter.
Making that assumption I believe you should be trusting your EP as you are probably under the best care available in the UK.
If you cannot find this trust you should take the medication and lifestyle options and live with the QOL this will offer you.
Thank you for your reply - I also had the cryo ablation at St Barts and the same EP at the time said it was my best option for the best outcome. They did use 3D mapping. I understand a phrenic nerve injury is very rare but has had many repercussions on my general health and my life in many ways.
Is radio frequency ablation the same as heat ablation? I question whether he will actually go near the phrenic nerve this time, he says not. As my last ablation was halted because the phrenic nerve was floating in and out of view.
He also says the recovery is a week to 10 days ….. when we all know this isn't true.
When the say a week to 10 days they just mean your out of the danger zone that doesn't mean you feel good also they don't include the fact that most ablation come with complications that are severely under reported for example I had aspiration pneumonia and pericardial effusion /pericarditis and on my medical report it said that I was feeling much better which is complete bullshit.
Thanks for replying Scott. In my experience the Dr's try to have you believe you will be back to normal very quickly ie within a week or so. Maybe they believe this themselves as its not them having the procedures but I would love to find out what a Dr who has had the procedure says!
Yes the radio frequency from the catheter burns the inside of your heart.
My EP was one of Dr Schilling’s team until 2 years ago.
I agree that full recovery takes a lot longer than a week or two. Maybe he was referring to beginning to return to normal activities rather than full recovery.
Best to talk to him again about your concerns.
Pete
Hello Surreyhunni, this is probably a question that many here are not really qualified to answer (with probably some notable exceptions)!
Given your earlier experience, it is quite understandable that you are concerned and if I were you, I think I would probably seek a second opinion if only to put ones mind at rest. I expect this would have to be a private consultation but Bart’s is a leading hospital with a good reputation and if by any chance you are referring to Professor Schilling, I would be more than comfortable following his advice.....
Thank you Flapjack - but no, I'm not referring to Professor Schilling. I'm trying to find out if I'm wrong in thinking all types of heart ablation can go close to the phrenic nerve, as I remember when I signed the consent form it was something mentioned fleetingly in the warning of risks. At the time I was being told this, they thought they were going to be doing a heat ablation instead of the cryo that I had been referred for.
I would feel exactly the same in your situation however if it will correct your problem it ay be a risk worth taking. Professor Schilling is supposedly the best in his field and many many people have had successful treatments with him, however once bitten twice shy, so I know how you are feeling. Whatever your decision, I wish you the best of luck x
Hi I have been offered a high definition ablation as I has 2 unsuccessful ablations last year my EP said this was new technology this year and could get to the moderator band where he needed to be, has anyone heard of this new technology and with what results he is keen for me to have this asap, maybe your EP has heard of it also?
My wife had exactly the same experience - phrenic nerve damaged after cryoablation. In her case, it took about 10 months for the phrenic nerve and normal lung function to recover. Once it had recovered, the EP advised RF under general anaesthetic to complete the job. My wife was only too glad to go ahead with it in view of the impact AF was having on her life. The previous cryoablation had already sorted out 3 of the PVs and in the RF ablation they were able to fix the 4th and also identify other rogue cells in the heart which they ablated. She was very happy with the outcome in that the AF was eliminated without damage to the phrenic nerve. It did take some time before she felt "normal" again (over 12 months in fact) but, because she has had another underlying long term problem with her thyroid, we can't be sure whether the speed of recovery was hindered by the thyroid issues. Her instinct is that the heart, having been "damaged" by the ablation procedures, takes time to recover so she puts her current level of well-being down to the ablations rather than anything to do with thyroid treatment. She certainly has no regrets over going for the RF ablation.
I would add that, in my wife's case, the EP said he couldn't do anything further until the phrenic nerve and lung function had returned to normal. You may therefore want to quiz your EP about the advisability of doing the RF ablation before the phrenic nerve has recovered. My wife's EP was Dr Todd at Broad Green, Liverpool who was also one of the doctors recommended in the newspaper the other day. Maybe your EP should have a chat to him about when to carry out the RF.
Hi tcpace - thank you for your response. I did question my EP about the risks due to the phrenic nerve injury sustained from the last ablation and because in November I also had to have a kidney removed and was told I was very high risk and may not make it through the op. I also had to undergo many heart and lung function tests as a different hospital to get them to even agree to take the kidney out ( I had a very large tumour almost the size of the kidney). As it was a life of death situation I had no choice but to go ahead with that. His answer was "I will have an anaesthetist with me and we won't put a tube down your throat". I stressed that I must be asleep for the procedure and he promised I would be.
I'm pleased to hear your wife's PNI has resolved itself. I pray the same will happen for me but 10 months down the line there is no sign of it. Can I ask did it happen gradually or was it a sudden recovery?
Hi Surreyhunni - sorry to hear about the problems you've had to contend with. Hopefully everything is going to work out well for you.
Regarding your question, my wife had been having regular X-rays after the cryoablation to see if the nerve had recovered. Eventually, about 10 months after the ablation, she experienced a tingling feeling in her chest (at the level of the diaphragm) over the course of a couple of days. It didn't seem to make a great deal of difference in terms of breathing but next time she had the X-ray the lung showed up normal. She reckons that even now her breathing is not quite as good as it used to be but at least both lungs are back to be fully functioning. Basically I'd say the recovery was more sudden than gradual and the tingling feeling definitely seemed significant in her case.
Incidentally just after the ablation, the EP told her that recovery from the PNI could take anywhere from weeks to well over 12 months. As it turned out it was about 10 months so, with luck, you'll be getting close to resolution of that particular problem.
One more point: I personally think it's important to have a GA for the RF ablation because it gives the EP more scope to explore the heart and ablate rogue cells than would be the case if the patient were conscious and more prone to find the discomfort too much. In my wife's case the procedure went on for somewhat longer than I had expected but it gave the EP the opportunity to do a more thorough job without discomfort for her.
Hi Surreyhunni, I know he isn't your EP, but I had my ablation by Prof Schilling. He carried out a combined cryo and RF ablation. He did not treat one of my pulmonary veins with the cryo as the entrance was too large and there was a danger of the balloon going in too far and damaging the phrenic nerve. This vein was treated with RF and successfully stopped the AF.
Unfortunately as it was "the team" rather than your actual EP who carried out your first ablation, they would be less experienced and might have missed the fact that one of your PVs was too large so the cryo balloon went in too far. That is the problem with NHS procedures, you're not sure who will actually carry it out.
However as your EP has said he would carry out your RF (heat) ablation, I would be inclined to go with that. He is incentivised to sort you out. I would just double check that it will actually be him. I would also add that you are impressed that he made the top 10 - it's always good to massage egos and he would try that little bit more as he knows you're clued up.
Hello, if you remember i had cryo done last July same problem as you phrenic nerve damage, however that has now healed,confirmed by a scan in January.I have been on list for 2nd ablation by mapping and radio frequency, but told them although 1st ablation was stopped due to damage it did make a difference to my quality of life so holding off on 2nd ablation for the now, have another appt at Heart Institute end of July when I will decide which way to go,his other suggestion was pace and ablate which I will also decline at the moment, but would consider next if quality of life decreased.
I know this does not answer your question, just same situation and my decision, and I believe we are all different so our decision-making will also be different.Hope you can make one that you feel is right for you.Best wishes Jane.
From what I remember when looking at the data for side effects of ablation it was largely the cryo which had the phrenic nerve damage. I have found this:
"In summary, phrenic nerve injury is a well-established complication of all types of AF ablation. Phrenic nerve injury is most common with balloon-based approaches including the cryoballoon."
This describes the problem as more common with cryoablation. Maybe the low temperature is more likely to cause damage than the high temperature? The surgeon's error might also have contributed to this. I would avoid allowing the same person to do the second procedure!
Just wanted to sympathise and emphasise with your dilemma. I too have a damaged right Phrenic Nerve following my Cryo Ablation two weeks ago. I can attribute this to a last minute change of EP, where I got saddled with A recently qualified consultant (3 months experience) As you well know this leads to the right side of your Diaphram being paralysed resulting in breathlessness. Only two weeks in and I feel let down because of the way it happened. However if I was offering advice I would go for a second Ablation because you are attending a top Hospital with the best Ep's around. (What I would give to have that choice) I sincerely hope your other medical problems resolve soon and i wish you better health in future. Please keep us posted as to your decision and how the Phrenic nerve is responding.
Over 2 years now since my aborted cryoablation which resulted in a phrenic nerve injury. The lung is still paralysed and I'm told it won't recover now. I declined a further ablation earlier this year and continue to suffer afib episodes every week, lasting between 2 - 5 days at a time. Having moved house earlier this year, I've now been referred to Addenbrookes hospital to see a cardiologist. I feel despondent as I was assured the pni would resolve itself and i'm very debilitated not only with the af but also having only one lung working.
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Update: Breathless after Catheter Ablation..Phrenic Nerve Injury????
Phrenic Nerve Damage
Ablation was a bust
