AF Association

Post Pulmonary ablation issues

I am weeks post pulmonary cryoablation for paroxysmal atrial fibrillation... the procedure was traumatising.. I am not being a baby here.. had other procedures unrelated and just got on with it.

I was not sedated enough or given sufficient pain relief.. I found it very painful and frightening.

Had procedure at 9.00am and home by 7.00pm.

The following day I was back in with heart rate ranging from 54bpm to 180bpm in seconds.. in hospital for a couple of nights and put on Verapermil.

I have not settled since and feel dreadful.. heart rate more stable but still having afib epsidoes daily with ectopic beats. When I have a gap in heartbeat it takes my breath away.. I feel breathless but sp02 seems ok. I have also coughed up frothy sputum (no blood) this morning a few times. But seems to have settled.

To complicate further I have asthma so cant tell if asthma or heart related.

I feel ill now all the time and shaky whereas prior to surgery i felt well apart from when i had afib episodes.

I feely extremely low and anxious which I know doesnt help

Going to see EP in 4 days time. I am concerned I am missing something as I ignored my Afib for 2 years thinking it was just stress.

I am 54 year old female... and told I am quite young for this..

Any support greatly appreciated.

Adele x

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It does take three to six months for the heart to fully heal following ablation. (Pulmonary vein isolation procedure) You will take time to feel better and often have some arrhythmias during that period. Do rest as much as you can and above all listen to your body and don't try to push too far too fast. Your experience during the procedure was unfortunate and uncommon by the way . Did you not make them aware that you were not sedated enough?

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Thank you for your support Bob.. yes I did tell them a few times.. but they just kep saying ina minute.. I really dont want to put others off.. It just happened to my individual experience.. I feel a lot worse though .. Is this normal Bob? Worse before better maybe?

I had to return to eork 10 days post op as self employed.. my job involves driving long distance to see clients and sonetimes the work is intense..I would have like more time off..

Although my Mum is in hopsital at present due to her dementia.. and has been for 5 weeks.. i am concerned how I will cope when she comes home...

My Ep not too happy me being put on new tablets.. and wants me to go in this Thursday.. so not sure what he will suggest.. his secretary said he doesnt see patients before the blanking period.. so now I am worried he wants to see me.. I know this anxiety is common with this condition but this has become a tad overwhelming

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Sounds like your EP has your best interest at heart

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No Pun intended there Mike? Lol

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Haha, I was in two minds whether to post that

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Made me giggle.. at least my sense of humour is still there..

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Hi Adele,I had a similar thing on my first ablation,I thought I was a tuff 70 year old Yorkshire man until they started ,bloody hell what pain,after i learnt that they had damaged my phrenic nerve and i had paricarditas " the bag around the heart being damaged".

The next 24 hrs were a night mare i was on morphene ,I asked what went wrong but the doctor didn't reply and the nurses said they didn't know,I've made repeated attempts to find out ,no results

6 weeks later I was back for another op. this time under general anaesthetic 41/2 hours filmed, I was told it was an unusual cased, they invited cardiologists from the south of U.K.to observe in another part of the hospital.this op. was a total success and I'm doing well after a long recovery.Thank you Dr Bala and his team.So keep the faith and your next ablation will be a turning point ,it will get better.

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Oh my goodness what a horrendous experience you had.. and yes they do breed them tough up there in Yorkshire :) so must have pretty awful... so very glad this dreadful experience is now behind you and that the following surgery has set you on the road to recovery.. its just not good enough to tell about went wrong... they told me mine went well and all I could think of the time was "well the surgery was a great success but yhe patient did" ha ha..

I know i am not and worse than before but perhaps this is just the blanking period.

Adele x

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A lot on your plate at the moment Adele, easy to say, but try and find time to relax.....I’m sure things will begin to improve, let us know what he says Thursday......

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Yes you are right... I must find more me time.. and be a little selfish in a good way..

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I think it is good news that your EP wants to see you so soon as it means they can look objectively at what is going on with you and your heart and whether you need more intervention now in the short term.

If you have suffered untreated AF for a number of years (as I did in my late 40s - thanks to my GP who thought it was stress) you may have AF originating from areas other than the pulmonary veins and the cryoablation only isolates the pulmonary veins.

Wait until you know what is going on no need to panic be pleased that your medic is taking you seriously and acting promptly to address your symptoms.

It was clear pretty much from the off that my first ablation had not dealt with my AF but it did inform what was needed the second time (including MRI prior to it). No way anyone on here can tell you what is going on for you with any certainty so really good to be back in front of someone who is in the best position to do that so soon.

Don’t worry rest up and take care.

Jo

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Thank you for sharing your experience with me. I am so shocked to hear GP did not take your symptoms seriously.. it also hadnt occured to me the electrical signals cone from elswhere.. just hadnt occured to me..

I am relieved I am being seen by the top specialist.. so hope i have some reassuring news .

I am in Af as I write i have had more AF in the last 3 weeks than the last 2 years.. so I definitely need some reasurance.

Xx

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So sorry you have had a bad time. I had mine done under GA I did not want to know anything you are very brave, you will feel better as days go by but if worried call for help.

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Thank you.. i wish i had mine under GA now.. Thank you for saying was brave.. if the EP hadnt had hold of my leg I would have bolted and run for the hills i felt like i had rverted to 8 years of age.. lol..

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Oh bless you I do hope you feel better soon x

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Thank you

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I would complain about the inadequate sedation, not only has it been a traumatising experience for you but has probably scared others who would quite like to know where you had this procedure so they can avoid it!

I am sorry you are having such a tough time, hope things improve soon.

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I feel dreadful if i have put others off.. it was never my intention.. this is my experience.. and could be a different experience with same surgeon a different day.. I will be talking to my EP about it though on Thursday xx

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So sorry you had such an awful time. I had an ablation a week ago but it was done under GA (only because it was cancelled twice and I was then offered a private hospital who only did it under GA). My heart has definitely quietened down but it has taken the whole week to feel vaguely human again, give yourself a break and let yourself recover as much as you can when you can.

I would make sure your EP knows exactly how you felt, especially if you had such a terrible experience. The fact they are seeing you is positive, write down the points you want to make and go through them making sure you get answers. You feel how you feel, you are not being awkward or a nucence, you are asking for completely reasonable help and support. It's easy to blame all sorts of things e.g. Feeling anxious but I would go with your gut feeling, you feel something is wrong so it probably is.

Good luck with your appointment and let us know how you get on. Xx

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Thank you for your support.. so pleased things have quietened down for you.. I honestly feel worse now than i did before .. i hope it settles.. I will let everyone know what EP suggests moving foward . I am pretty much in permenant Afib at the moment.. which is wearing...

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Sorry you had such a bad time. But things may well improve. After my second very complex ablation (under GA with TOE thank goodness) 6 months ago I had 4 months of frequent bouts of AF - very intense every 3 -7 days and one lasting 5 days. Also felt weak and bad with stairs and hills. Like you I felt it was in some ways worse than before. (I had persistent AF previously - like you say, wearing)

But after that everything seems to have settled and I feel better. Still some ectopics and still on meds but better. Will it last? I hope so. Early days I know and fingers still crossed, but I agree with everyone above, that ablation is a far bigger deal than doctors make out - for many people. And my EP says the heart muscle gets very irritated.

I really hope yours settles too as for some people it's such a great success. Staying calm helps but it's easier said than done...

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Reading your experience has made me think more about my expectations.. your right this procedure seems to be quite played down really.. "just pop in for the day and home you go... sounds like no more than having a tooth pulled"

But it is quite an aggressive procedure.. so maybe just relax a bit .. il feel better once i have spoken to EP

Adele x

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I've got some excellent therapy through a charity called Anxiety UK. I opted for hypnotherapy but other types of psychotherapy are available It's really helped me with the anxiety. Worth a look at the website if that appeals to you.

Janet x

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I was so encouraged to read your post. I am at exactly four months post my second ablation which was for perimitral atrial flutter. I have had two ablations within four months-- first for AF and second for AFL. Total two ablation time plus post ablations is nine months. During four months post second ablation, I have had lots and lots of short episodes (1/4 days) but I have also had two 5 day episodes during blanking period and one 9 day episode right after blanking period. If these episodes don't stop, a third ablation is suggested.

Are you saying that after the 4 months you no longer got AF? If I follow you, I would be really pleased.

I am on meds also, and they have been increased after the 9 day episode.

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Sounds like we are around about the same place! Yes you are right, since January I have had no AF. And feeling lots better generally as well as on stairs etc. Some ectopic beats or PVC but things suddenly improved after 4 months.

I'm not getting my hopes up too much as it's only 11 weeks and I know people on this forum who've had quiet spells and then the AF has come back... so every available finger is crossed! But if it continues then wonderful!

On the positive side the AF nurse and EP say it can take 6 months to settle and they have known people for whom things "suddenly come right".

When I was in the blanking period having problems one EP said I might need a 3rd ablation, but then my own EP said he'd done so much work in my second ablation that it might not be possible. It surprised me because people on here have had 3 or more. But it depends on what exactly has been done I suppose.

I was in persistent AF for 8 months before 1st ablation and 7 again before 2nd. I have slow heartbeat so getting meds right is a juggling act. So 100 Flecainide x2 daily and 1.25 Bisoprolol x2 daily (split dose suits better) plus BP meds and Apixaban.

If things don't stay right (hope they do) then a pacemaker is one option which I hope won't be needed but reading posts on here am less scared of that than I was. If the current peace continues, hooray 😊😊!!! Am taking life easy and really working on the anxiety though.

Sending you positive vibes and hoping things turn a corner for you. J

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Your ablation history puzzles me. You were allowed to be in persistent AF for 8 months before the first ablation? You might find interesting this article by Dr. Michael Haissaguere : afsymposium.com/february-2014 as he discusses the number or rotors formed when patients are allowed to remain in persistent AF. (He invented the ablation technique.)

I had to go overseas because I was being allowed to reach long-standing persistent. I had my ablation at 6 months with 4 rotors that had to be ablated. You remained persistent for another two months compared to me. You may or may not have developed another rotor in the additional two months.

Before the second ablation you write you were persistent for seven months. Were you never in sinus after the second ablation?

Was your second ablation for AF or atrial flutter?

You might want to read a case history whereby the patient was told to have a pacemaker but by going abroad, he has now been AF free for one year (I talked to him): a-fib.com/charn-deol-a-fib-...

Since you mention two EPs who have different opinions, it might be wise to get a third opinion from an EP who has done a large amount of ablations.

There are also new methods such as the RADAR being reported in 2018: a-fib.com/2018-af-symposium...

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Thank you for sending this. Most interesting and useful. One of the EPs i saw trained with Haisseguerre in Bordeaux. Where did you go for your treatment overseas? I would be interested to know how easy it was. Did we talk once before and you travelled from Canada? Did they use the Medtronic vest on you?

My EP says he's done 3 to 5 ablations a week since 2006. Does that sound a large number?

You ask if I was in persistent for 8 months. That's not quite right thank goodness but it was too long. Its a long story and I was trying to summarise! I had persistent AF 3.5 months. A cardioversion stopped it for 3.5 months and then I had my first ablation which was PVI taking in also the atrial roofline.(May 2016). In sinus rhythm most of the time for 8 months. (May- Feb 2017) Occasional AF stopped by Flecainide.

AF bouts became longer over 3months ( Feb - may 2017) but still in sinus much of the time. Then I had persistent AF continuously for 3 months and a failed cardioversion - lasted 6 hrs in sinus - before my second ablation (early Sept 2017).

I obviously had remodelled as they found there was no AF from the Pulmonary Veins, the second ablation with mapping was very comprehensive, took in Left posterior wall, septum, mitral isthmus also Right atrial wall and septum for flutter. Ok for 2 weeks. After this 4 months of episodes then they stopped.

Thankfully no AF now for nearly 3 months. Hoping it lasts but feel inspired to seek another opinion if necessary. Already have the EP lined up if necessary. Perhaps a trip to Bordeaux. How much would it be?

Thanks again

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Hi JanetMayne: to answer your first questions:

I assume that the EP who suggested that you might need a third ablation was the one who trained in Bordeaux. My Bordeaux EP said that if the arrhythmia is still coming back, and I was willing, they could propose a third ablation. My Canadian EP also mentioned a third ablation. I went from B.C. , Canada to Bordeaux, France for both ablations in a span of four months.

Yes, the cardio-insight vest was used both times, The second time, I also had alcohol injection in the vein of Marshall for perimiter flutter, a technique that they had been using for only a few months. I had no complications from both procedures, The first procedure was very long, but the second was only one hour. And, I had no bruising for the second one, I could see only the little cuts to get to the femoral vein .

The cost for the Bordeaux ablations was 16,555 euros each time, for a total of 33,110 euros (16,555 x 2). Translated from Canadian money, that was big bucks but it was worth every penny. I have no idea what the cost would be for a consultation.

Yes, we talked in 2017, October 13. I don't know the required frequency for a commendable EP, but 3 to 5 ablations a week sounds good.

I would check on the terminology about "remodelling." I may be wrong, but my understanding is that the pulmonary veins are still undulating, but signals cannot jump over due to the scar tissue as scar tissue does not conduct signals.

After reading your procedures, we had about the same work done with the difference that the bulk of the work for mine was during the first ablation, whereas for your, it appears to be in the second.

The first time, we both had pulmonary isolation plus the left atrial roof-line, except in mine, it could not be completely blocked. However, for mine, I had most of the stuff done in the first that you had done in the second, with bit of a variation. ( for first mine: anterior left atrium, septal left atrium, posterior left atrium, inferior left atrium, right atrium, PVI, atrial roof-line , not completely blocked.

For both, an interesting similarity for the second is that you write mitral isthmus and I had perimitral atrial flutter -- but I think that it may be the same as mine reads "bidirectional block at the mitral isthmus was obtained with a delay of 250 ms."

I would conclude that we have both had about the same amount of ablation, so I would investigate more about having a third ablation if you do not stay in rhythm. My heart rate has gone below 60 b.p.m. but then I have been on Amiodarone, so I'll see what happens when I am off it.

This comparison is very long, but I felt it necessary since a pacemaker is not a reversible procedure.

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Hi there. I do appreciate your detailed reply. Thank you. It sounds as if we have had the same work done. Interestingly the Haissaguerre trained EP said he does more comprehensive first Ablations when patients have long standing AF. I think that is going to be the way forward.

I take on board what you say about pacemakers. I really hope things improve for you. Best, wishes to you.

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Do hope things settle down for you quickly; for me, I am learning the anxiety during an episode does make it worse but controlling anxiety is an art, something I am working on. I know the pressure of being self-employed, but you really must think of yourself first it is the only way. Best wishes

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Yes you are right relaxation is definately an art.. if i had been PAYE I would have taken a month off.. unfortunately back on job 10 days post op.. but i am not on the road every day so i can write my reports when i want..

The anxiety fuels it. Lol i want a brandy to relax but the drink makes it worse. Cant even have a coffee any more...

I had a sprinkle of salt on mybfood last night.. snd thought to myself my gos you are living dangerously lol

Adele x

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Dear Adele, how scary for you, I can't imagine being awake and not getting sufficient pain relief. I hope you get this resolved with EP. You will be in my thoughts and prayers for a resolution. Big Hugs.

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Oh thank Bud that is most kind.. xx

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No way should you have had inadequate sedation like that. Totally not acceptable. Maybe thats one of the reasons why your EP wishes to see you earlier than usual

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I think i agree with others,a formal comp!aint about the level of pain you were in does not seem unreasonable.

Glad you are being reviewed quickly,easy for me to say take it slow!y and keep calm but perhaps some mindfu!ness and breathing might help with your anxiety and distress in the meantime? There are several on youtube etc which you might find helpful,and cDreamer has recommended several on this forum.

Thinking of you

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Have they checked you for blood clots? I had an ablation for SVT 3 weeks ago and at week 1, I felt off with a little chest tightness and elevated heartrate (110-120). The ER doc did a D-Dimer test and CT scan and it turns out that I had a small pulmonary embolism. I'm only 29 and my risks for clots were relatively low. I just wondered with the frothy cough and elevated heartrate if that was something your doctor looked into.

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How did you get on with the EP appointment? Hope you feell better now?

Where did you have the ablatiion? I am waiting for one,Im 58 and started af when I was 53,suspect stress had a major influence too,hell of a lot going on at the time.

Mind and body are so connected!

Bestwishes

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