So my Question is.....: Hi All, Since... - Atrial Fibrillati...

Atrial Fibrillation Support

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So my Question is.....

Maureens46 profile image
57 Replies

Hi All,

Since being diagnosed last year 2017 with PAF I have taken great interest in reading all the posts on here.( I actually contribute the odd one myself). Most recently I have concentrated on those dealing with Ablation as the increased frequency of my attacks have put me on the waiting list for a Cryoablation. Simply put, they don't make for great reading. It seems to take multiple Ablations often with post procedure agony including irregular beats, Ectopics, Flutter, AF, lightheadedness, breathless, tight chest, pain in chest, throat and more. All the above endured for six to nine months post procedure with no guarantee of success. It doesn't exactly fill me with confidence or offer much by way of better quality of life. Any lingering hope that my procedure will be successful first time around is but a fading dream.

SO MY QUESTION IS...

Has anyone on here had a successful Ablation 1st time which gave instant relief and calmed the savage beast FULL STOP.?

The thought of possible multiple Ablations each one taking six to nine months of recovery at my age (74) doesn't offer much by way of options.

So there you have it, a silly old person having a pessimistic view of Ablations, but I'm confident that someone in our loving AF family will reassure me. What thinks you?

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Maureens46
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57 Replies
BobD profile image
BobDVolunteer

Maureen the problem is that most people with successful ablations don't come here as they don't need to.

Three to six months is the time it takes the heart to fully recover by the way and most people find that any symptoms pass after a couple of months. I have never had any pain after day three maybe and such complications are rare. Yes you may need a follow up ablation as cryo is really a one size fits all solution and often doesn't-- especially since we are all different.

Try being positive as it does help.

Maureens46 profile image
Maureens46 in reply to BobD

Good point Bob, no need to post. As always we can be assured by your wisdom and detail. Many tks

Mo

Mejulie69 profile image
Mejulie69 in reply to Maureens46

Bob has hit the nail on the head - people who have successful ablations don’t generally come here, yet they make up some 75% of the population. For what it’s worth, I had my first ablation on Monday, apart from the terror during the approach, it was a piece of cake. 50 hours post ablation, I am so far completely ectopic and AF free. I was having 15,000 PACs per day prior to my ablation, and one bout of AF per week.

wilsond profile image
wilsond in reply to Mejulie69

Thank you for this...im fretting waitingto see EP for ablation referral..bricki g it bigtime!!

Dolly1962 profile image
Dolly1962 in reply to wilsond

Me too wilsond ....

Dolly1962 profile image
Dolly1962 in reply to Mejulie69

Fingers crossed for you so glad it went well . Me too aswell as wilsond have been bricking it as waiting to see a EP to discuss a ablation as not tolerating any drugs. So pleased for you , take care and here’s to your full recovery .. 🤞Thankyou for the reassurance it’s much needed ...

wilsond profile image
wilsond in reply to Dolly1962

I see EP 20th April now,just been changed from 6thApril.Let me know how you get on!take care and stay well!

Dolly1962 profile image
Dolly1962 in reply to wilsond

I’m still waiting , but will do hope yours goes well , 🤞

beardy_chris profile image
beardy_chris

I have heard several EPs (Electrophysiologists) say that you should expect to need two ablations. Often only one is necessary but don't see it as a failure if they need to go back and 'fill in the gaps'. If you expect to need two, your expectations will be more realistic.

Peddling profile image
Peddling

I very much concur with your view. I’m pretty sure I would need 2 or 3 ablation and worry about the recovery period. In my opinion repeated procedures of this type weaken the system. At my age 73, do I really want to run the risk? Short answer, if I don’t have to I won’t. If it becomes an emergency, or totally reduces my QOL then I will.

Maureens46 profile image
Maureens46 in reply to Peddling

Good post Peddling, yes our age is a big factor when considering our options. Having had two complete knee and one Hip replacement done in recent times the recover times get longer with age. Thanks for you input and here's hoping you don't have to make the choice

Mo

1Jerbear profile image
1Jerbear in reply to Peddling

Peddling Your answer here fits me too . I have had 4 cardio shock treatments and one cryoablation .I am still a-fib I will be 73 March 5TH. I know my doctor will suggest another ablation . From the start they said it usually takes two . Even so ,there are no guarantees. . My experience with my first ablation about 1 1/2 months ago was not what I call pleasant . 5 1/2 hrs for the procedure ,they must have had my arms tied behind my back because when i awoke my shoulders were killing me . When they pulled out the 3 tubes the pain was indescribably awful . The urine catheter must have tore me up inside because I peed bloody for two days . The only side effect I have now is shortness of breath when I excerpt my self. Oh yes I forgot my left groin side hurt for a week and I ended up with a bruise down to my left shin . So Do I want to go through this again ? Do I look like a person who enjoys pain? LOL Answer; NO! I'll go with what I have . I'm on Eliquis blood thinner ,the rest is in Gods hands . That's how I feel about it . Everyone is different .On here you see some people say it wasn't bad ,I am happy for them , I really am ,and I hope it keeps them in rhythm . If they said your gonna die with out it , and my wife i still here ,then I would do it .I hope we don't have to come to that Peddling. I hope we can continue our life on an even keel that we can accept . Sorry If I ranted hahahahahah .

cuore profile image
cuore in reply to 1Jerbear

Hi 1jerbear. I will be 75 on March 3. Do read my reply to Peddling. I am so sorry to hear you had such a bad experience as mine was the total opposite of yours. I do not know how skilled your arrhythmia department was, but for such a delicate procedure, the advice, I have read, was to get the most qualified EP you can. Should you ever contemplate another ablation, I would strongly suggest that you investigate other places.

in reply to Peddling

Hi Peddling, I;ll be 74 next month, had my first 'pace and ablate (Nov 2016), felt fine almost from day1, am still feeling good and am on no cardiac meds. Just my experience but if I need a touch up down the road I will hop on the table and do it. irina1975 edit. I don't think 74 is old!

Peddling profile image
Peddling in reply to

Hi Irina,

No I don’t think 74 is old either...on the outside! It’s just that I do notice it takes me longer to recover from coughs, colds, etc., and my body is not so robust at fighting off infection these days. Of course that could be as a result of the af as well as age. Your post is encouraging though, I just hope you don’t have to catch that bus

cuore profile image
cuore in reply to Peddling

Hi Peddling, last year at the age of 74, I had two ablations, four months apart: the first, a long one, for persistent atrial fibrillation, and the second, an hour long one for peri-mitral atrial flutter. After the first, I did tire somewhat and falling asleep watching T.V. was easy. It is now three months post second ablation and I am in sinus rhythm hoping to stay that way. Compared to pre- ablations, I do not feel my system has been weakened at all. The contrary is true: I feel positive and energised. I did not and would not consider age as a negative factor in my decision.

Peddling profile image
Peddling in reply to cuore

Thank you cuore, that is very positive news and I am so pleased for you. As I said, if my QOL deteriorated I would no doubt reconsider my position.

Hello Maureen, a bit of a dilemma!!

The first thing I would say is you need to think about the figures. One million plus have AF in the UK, less than 12,000 have joined the forum and a small fraction of those post on a regular basis. I haven't got a clue how many ablations are carried out in the UK, but it must be several thousand and Bob has said the rest.....

rosyG profile image
rosyG

Hi Maureen-you don't say anything about your present burden of AF and quality of life at present with AF as that would help you to make a decision. I've never heard anyone here say they are in agony after ablation.....but there are serious risks to consider

Maureens46 profile image
Maureens46 in reply to rosyG

Hi Rosy,

I did reply to your post but it seems to have been lost in the bowels of technology.

I do have PAF with increasing frequency (hence being on the waiting list)(I have exhausted all the triggers,) but despite all that my QOL is good. I suppose if I am honest as an arrhythmia patient I possibly suffer depression not only because of a deteriorating Heart function,but from constant anxiety of anticipation of next episode. Having said all that I'm still above ground so onwards and upwards "What can't be cured must be endured"

rosyG profile image
rosyG in reply to Maureens46

yes it's hard waiting for the next episode- how often and how long are they? I plan what to do when they start and that stops me being so anxious!

Maureens46 profile image
Maureens46 in reply to rosyG

Hi Rosy,

Can fluctuate never know when it's coming but have had four episodes in the past week. On Bisoprolol 1.25 and Flecanide as PIP which has worked up to now. I allow it to run for about two hours untreated before I take PIP. Nice to hear from you tks.

secondtry profile image
secondtry in reply to Maureens46

Hi Maureen, I agree with your original question.

My cardiologist would not favour PIP when you are having so many episodes, based on my experience (64yo, Lone PAF, lowish pulse & BP, no comorbidities) you need to be on 200mgs regular daily dose of Flec to stabilise yourself. I know nothing about Bisoprolol as only on Flec. The cardio's argument is PIP at your stage becomes a roller coaster for the heart, better to keep things even - you will probably be reluctant to leave PIP as I was, but 4 yrs later with no AF, no known side effects & no ablation I am glad I did. Good luck.

Maureens46 profile image
Maureens46 in reply to secondtry

Many thanks secondtry, agree about PIP. Have already tried Flec.200mg daily and had an AF episode daily. However I didn't give it a chance to work. Stopped it after five days and back to PIP. (With GP's blessing). Apology for the pun but seriously thinking of giving it a secondtry. Thanks again for your reassuring post and continued good health.

Mo

secondtry profile image
secondtry in reply to Maureens46

I would look at taking Magnesium (Nutri MegaMag Muscleze) supplement and CoQ10. After I was put on 200mgs Flecainide per day, it stopped the nine AF episodes in the last month (when on 100mgs/day) but I still felt pretty bad then 3 months later I consulted a high profile London Naturopath, who said he treats AF patients with just the above and I felt better after taking this and have continued for 4 years having regular 6 monthly blood tests to check the levels nb the Mg test needs to be the 'Red Cell' test through Biolab London, not the GP one. Do take professional advice first though plus research replies on this Forum nb I read somewhere CoQ10 can have some effect re blood clotting - life's never simple!

cuore profile image
cuore in reply to secondtry

From my research, I remember that CoQ10 is contraindicated with Warfarin but fine with the newer anti-coagulants.

secondtry profile image
secondtry in reply to cuore

Thanks Cuore for clarifying that aspect. Still exercise caution people as the reason it affects Warfarin (I believe) is that it has some coagulant effect, maybe not material.

I'm going to call mine a success until i'm told otherwise. I "feel" like i may have flutter, but I'm not 100% sure .

If I need another ablation, it doesn't worry me. I'd rather not but I would grab the opportunity if offered.

Recovery took longer than I anticipated , but only regards to energy levels and fitness. I suffered absolutely no pain

Like Bob says, the success stories don't usually hang about.

Like some other forums, people are happy to post that their hotel stay was rubbish, their food was awful or their car was a piece of junk, but not as many will tell you about the good stuff

in reply to

my other thought is, with the NHS strapped for cash, if the failure rate was huge or the benefits questionable they wouldn't do it

wilsond profile image
wilsond in reply to

That was exactly my comment this week!

Maureens46 profile image
Maureens46 in reply to

Thanks Mike, most helpful.

Mo

Mickhall profile image
Mickhall

Forgive me but I have only just been diagnosed with AF and am new here, what do folk mean when they say their waiting for the next 'episode.' My heart rate is high 24/7 what I am asking is what is an episode?

doodle68 profile image
doodle68 in reply to Mickhall

Hi Mick :-) see the link for a description of the different types of AF,scroll down the page..

heartrhythmalliance.org/afa...

I have 'Paroxysmal' AF it comes and goes referred to by many as 'episodes'

Mickhall profile image
Mickhall in reply to doodle68

Thanks for your prompt reply how do you deal with the type of AF you have, do you check your heart rate regularly or can you feel it when it flips into AF. I asked because after a successful cardioversion op I though I was ok, it was only after I had my blood pressure taken ten days after the op I realised I had flipped back into permanent AF. (Later confirmed with ecg)

I felt no symptoms but when I realised I was back in AF they stated crowding me in. Could this feeling be psychological and if so is it common

doodle68 profile image
doodle68 in reply to Mickhall

Hi Mick :-) no I don't check my heart rate regularly. I can feel an episode starting if it is a bad one with lots of symptoms then I cope as best I can .Some episodes I can't feel and find by accident when checking my blood pressure which I have to record a couple of times a week because I have had a high BP.

I take an anticoagulant and a beta blocker, nothing else. I have learned to live with AF, it is just somthing that happens sometimes over which I have no control. It no longer scares me :-)

Buffafly profile image
Buffafly

Wow, two knees and a hip replacement! An ablation would be a piece of cake 😀 I had mine two years ago, recovery no problem, straight off medication. I have had a couple of episodes of AF when I have been ill with something else and another strange arrhythmia once but I don't feel the need for a 'touch up'. I didn't want an ablation but I couldn't take meds anymore because my heart was running too slow and pausing so a pacemaker was the alternative. I was delighted to get rid of the medication. One of the reasons I 'hang about' is to reply to people like you! Of course you have to make your own decision based on your QOL and perception of risk but people have already made very good points re statistics so I'm just adding one good news story. I'm 73 by the way......

Maureens46 profile image
Maureens46 in reply to Buffafly

Thanks for "hanging about" Buffafly" I'm glad you did. I too have a slow Heart rate and that too can trigger an episode of AF (So says my EP) as you point out it's my call and based on my current AOL, so big decisions to be made. All the posts on here have been most helpful in different ways in helping me to form an opinion, so thanks again Buffafly for your good news story long may it continue and please do hang about the forum needs you. Of course I will keep you all in the loop regarding my AF journey.

Mo

opal11uk profile image
opal11uk

First and foremost you are not a silly old person, your the same age as me! lol Personally speaking, ablation didn't help me, I was offered another and refused because my quality of life had gone from bad to worse after the first one and I ended up with my trusty Pacemaker. To be honest no one can help you as there are no guarantees with any of this and of course you are guided by your professionals and the decision has to be yours. My response is a negative one sadly but I'm sure others will have more positive stories to tell of their ablations. Good luck whatever your decision.

Maureens46 profile image
Maureens46 in reply to opal11uk

Hi opal, your response might be negative but it's appreciated. It goes into the mix with the more positive ones and helps to formulate my ultimate decision. So thanks for your input.

Mo

opal11uk profile image
opal11uk in reply to Maureens46

the sad thing for me was that the medic told me the procedure had been 100% successful, I came out of the hospital with a dreadful cold which couldn't have helped and after a week or two started to have 'white outs' which apparently were a precursor to passing out and my cardiologist was concerned that this could cause real damage if I collapsed going downstairs, crossing the roads when walking my dog etc.etc. so was really frightening. After many conversations with the specialist and his nurses it was thought that perhaps during the procedure he had interfered or even damaged the sinus node, anyway my heart rate became too low and there were unacceptable pauses so a pacemaker was fitted and life has been good ever since, except that my hubby was diagnosed with chronic Leukemia yesterday so not so good.

notkidding profile image
notkidding in reply to opal11uk

Totally agree, take all input, suggestions and recommendations, and then own your decision.

There really are no ablation "success rate" numbers, because the definition of "success" varies by EP, cardiologist and patient.

For example, when I pressed my EP for a definition of ablation "success", he told me that I had a "50% chance for no AFib for a period of time. When I asked for the definition of "a period of time", his response, "Weeks or months".

Good luck in whatever course that you choose!

Maggimunro profile image
Maggimunro

Hi Maureen, my first ablation for SVT (dizzyness, fainting, pulse 200 plus) was a total success. However they discovered I also was developing Afib, and that is the point. Afib worsens with time. Mine went from one attack monthly to persistent in 11 months. My quality of life was rubbish and I couldn’t tolerate the medication.

So ablation two was for Afib. They do extensive mapping at the start of the proceedure and usually find 50 to 70 points inside the left atrium that are sending out the unwanted electrical signals. The chances of getting them all the first time around is unlikely, so a second ‘mop-up’ is sometimes needed. As indeed it was for me. Ablation three was last June and I have been Afib free aver since. Yes, I used to obsess about post op ectopics (pure ignorance on my part) and I still get low level left sided chest pain when I lay on that side, BUT my quality of life is now amazing. I did a strenuous, hilly 7 mile walk last week.

Yipee.

Maureens46 profile image
Maureens46 in reply to Maggimunro

Glad to hear that you are AF free Maggi although it took a while to get there. Three Ablations are obviously a small price to pay to be free of AF and enjoying such a great QOL. Am really jealous of your hill climbing feat as I used to do all that and more. Now reduced to 3 miles a day max on sticks while recovering from new Hip. Long may your AF free journey continue and many thanks for your input.

Mo

Flyer2820 profile image
Flyer2820 in reply to Maggimunro

Hi Maggimunro

I am glad you mentioned that you have slight chest pains as I was going to let the cardiologist know about this. I find that I sometimes get a quick sharp chest pain on my left side or it may be an ache when lying on my left side. I wondered if this was part of AF. Anyone else get this. I must be honest I am not too worried about it though. WHAT'S THE POINT of worry. Get on with it I think.

Flyer2820 profile image
Flyer2820 in reply to Flyer2820

Sorry Maureens46 not Maggimunro

Maggimunro profile image
Maggimunro

Ps I am 69, so no spring chicken.

Blavet profile image
Blavet

Hi Maureen. Bobs correct in what he said. I’m one of the lucky ones (touch wood). I don’ t post very often rarely in fact,but I do keep up to date with this website. I had a cyroablation in March 2016 and have been free From PAF since then. I’m 52 now and have had rhythm problems since I was 29. I had a radio frequency ablation in 2006 for SVT (basically I had an extra pathway causing a very fast regular heat rate up to 200 bpm. That ablation was successful too but then had the dreaded AF. I’ve had many echos and scans over the years and was lucky that my atria hadn’t become enlarged. I’m very grateful to the two consultants who did my procedure at The Royal Victoria Hospital in Belfast. Totally free of all meds and free of AF. Good luck and hope it all goes well.

Maureens46 profile image
Maureens46 in reply to Blavet

What a great post Blavet and delighted for you and thanks for being around to add to the discussion. Keeping fingers crossed that you stay one of the "lucky ones"

Mo

Lindabob profile image
Lindabob

Yes, I had a Ablation 17 months ago. It was preferable to a trip to the dentist. I went home and never experienced anything other than a bit of an ache in my chest for a couple of days. I took it easy for two weeks and was careful for another few weeks. Since then I have had a few ectopics. Last week I had s very short run of AF, less than a minute and I feel great😊. I hope I am AF free for while yet.

Maureens46 profile image
Maureens46 in reply to Lindabob

Hope you stay AF free Linda nice to read about another satisfied customer. Many thanks

Mo

1Jerbear profile image
1Jerbear

Hi Maureens46 .I have had 4 cardio versions .The first two lasted a long time ,kept my heart beating right .The second one lasted 3 1/2 years and then back into A-fib . I had a cryoablation almost two months ago . I am still a-fib or in a heart flutter one or the other . My symtums shortness of breath after climbing stairs or doing anything a little strenuous . They told me a head of time it usually takes two ablations .I am on two types of blood thinners ,one is Eliquis for a-fib the other for my stents ,which I had received a few months ago in September . Actually other than shortness of breath I feel pretty good . I must be sort of the exception , as we are all different . I don't want to go through another ablation because it was not easy for me .I'm almost 73 so do I want to go it again ,don't think so ,so far as the way I feel now .My point , we are all different and so this is a great place to be to read all the other experiences here and read all the great advice and opinions that help in making a decision .Of course we need to write down our questions for the doctor or doctors involved in our case . I wish you well ,Jerry

Maureens46 profile image
Maureens46 in reply to 1Jerbear

Another great post to add to the mix Jerry. I can understand your reluctance to undergo a second ablation. I hope you don't have to make that choice. Many thanks I appreciate your input and your AF journey.

Mo

Hi Maureen. I will be 74 next month. I have had a successful ablation in Nov 2016. However I also received a pacemaker at the same time. I felt better within days of having the procedure. First I was able to get off meds that had been making me feel tired and generally unwell for a long time. Second it did not take months for me to feel better. Third, I hope I continue to do well but if my EP says I need another ablation (not because this one wasn't successful but because more tissue has deteriorated or areas of my heart than may have been dormant have begun to cause more electrical impulses) I would have it to continue feeling so well. Just my experience and I'm sure getting the pacemaker has increased my chances of having a successful result. But I'm thrilled to be able to be off cardiac drugs. Take care. irina1975

Maureens46 profile image
Maureens46 in reply to

Hi Irina,

Nice to read about your success, and this gets added to the positive and successful pile. Long may your AF free journey continue and many thanks for your contribution.

Mo

in reply to Maureens46

You're welcome and thanks for the kind words. I did a lot of patient teaching during my career and now I try to help patients believe they are their own best advocates and the best way they can do this is through knowledge. Often, no one has as much knowledge about an illness than a patient who has it. Fortunately, my observation is more and more doctors enjoy working with a patient who is interested in learning about their disease and actively taking part in their care.(If you find a healthcare provider who is threatened by this approach run and keep looking!!) Re a-fib my main message is it can be well-managed and we can lead very comfortable lives. I am in permanent a-fib (living with 1 ablation, a pacemaker, and a Watchman device) and to me it's less bothersome than some other medical conditions I contend with. For 'newbies' (newly diagnosed patients,) it's hard in the beginning until you and your doc-often thru trial an error-figure out the best treatment plan for YOU. Once you do, it's almost smooth sailing. (With occasional choppy seas! LOL). But a comfortable, good quality of life is possible-in my opinion. Take care. irina1975

Victoria55 profile image
Victoria55

Maureens46, I had an ablation last January 2017, and thankfully it went very well. I only had a little discomfort the first few days, which was to be expected. And I am grateful that I haven’t had any A-Fib events for an entire year, fingers crossed.❤️

Maureens46 profile image
Maureens46 in reply to Victoria55

Fingers crossed Victoria that's great news and long may it continue. It's always nice to read a success story it restores faith in people like me who are always a little pessimistic. Thank you.

Mo

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