Pulmonary vein isolation for " Quality of Life" not health ,in Wales .

[gedbo]

Hi

Today I and appt with electro physiologist some 3.5 years after diagnosis and 2 unsuccessful cardio versions .Currently on amiodarone and warfarin age 58 and in good health .

The reason I mention Wales is that location appears to be a significant issue in treatment protocols and success rates depending on where you live. Advised by cardiologist that 60% chance of success of procedure . He said that complication in Wales is that Welsh Assembly Government will only fund local anaesthetic for this procedure which means that many people feel significant discomfort and are likely to move during procedure , which can have significant consequences for success. Recommended if I wanted to proceed that register with GP in England was a good move as general anaesthetic is funded in England .

However after I described my symptoms he told me that procedure would really only be to increase my quality of life as AF would not affect my longevity, compared to my life expectancy if I did'nt have AF.

Was somewhat confused by this as he was keen to emphasise risk of stroke via procedure but no mention of stroke as outcome of AF. Rather that factors such as high blood pressure , diabetes , age etc were indicative of risk of stroke and as I didn't currently have those , stroke not a concern.

Also procedure not a " cure" as even if successful scarring will eventually diminish and electrical impulses flow again.

I am not sure whether he was " loading the dice " a certain way to influence my decision. Wife s view after leaving consultation room wa " No way are you having that procedure." Would appreciate experiences of others in such consultations .

Gedbo

[dedeottie]

I had my ablation in The Heath Cardiff and my E.P. did exactly the same making it all seem very worrying. In the end I asked him as a human being not a doctor whether or not he would have one if he had A.F. and the answer was yes. As it happens, I will have to have another as this has not fully worked but I'm still glad I chose to go down this route as my personality is such that I had to know I had at least tried to get rid of it if only temporarily. When I run out of ablations I will hope there is something else to improve quality of life. The procedure costs around £16000 so they are very cautious about how many they do especially here in Wales.

Good luck with decision making. It is not easy I know.x

[gedbo in reply to dedeottie]

Hi Dedeottie, it was very useful to hear your experiences in Wales and why you went for ablation. This helps me to fill in some of the unknowns which I feel are holding me back frm decisions. I do hope your second ablation is a success,

many thanks

Gedbo

[rosyG]

I don't think he was "loading the dice" but telling you about the very real risks of ablation, factual details about your stroke risk with low chads Vasc score and your stroke risk is reduced by Warfarin.

However, you are young to be on strong anti arrhythmia drugs which also have risks attached when they are used long term.

It's hard to comment because the likely outcomes are very individual and he was talking with full knowledge of your individual case.

Others who have had ablation ( I have not agreed to it as feel I am not symptomatic enough to warrant the risks- however I am not taking regular medication except anti-coagulation) will be better placed to advise you.

I hope you can sort this out- it's a difficult decision for you.

If you are not very symptomatic ( you say you are healthy) was the possibility of any alternative medication suggested- I'm not saying this is needed as don't know your individual circumstances but do wonder if a second opinion re medication would help?

Regarding anaesthetics, some procedures in England are also done under local so don't know if you can guarantee a general here- others will help with this

[gedbo in reply to rosyG]

hi rosyg.

thanks for giving me some balance about " dice loading ". and describing why you have made your decision not to proceed with ablation.The antiarrythmmia drug is a worry , I think I am fortunate not to be suffering side effects but I think this could change over time. I will ask for review of meds .

many thanks

Gedbo

[BobD Volunteer]

Personally I think the risks of being on amiodarone long term far exceed those of having ablation (PVI) . I was 60 when I had my first and 63 when I had my third successful one although the second worked for a while. I'm now 70 and still AF free and every moment has been worth it. I guess it depends on how symptomatic you are but don't be fooled by people telling you AF won't do any harm. It can cause heart problems such as cardiomyopathy (enlarged heart muscle) and even heart failure if uncontrolled long term and for many people their quality of life is greatly reduced.

I initially shied away from ablation but as my condition worsened (and AF always does) my view changed.

Bob

[gedbo in reply to BobD]

Hi Bob

your comments are very thought provoking for me , and I do appreciate that. I suppose the concern is about balancing the different types of risk up. I did think that while treatment may currently be " quality of life" issue , this will change with my age . EP did mention that there would almost certainly have been remodelling of my heart. I understand this will continue to deteriorate.

Having read some other posts on amiodarone I do not think that it provides any more particular benefits to me say than flecainide. I know this is and individual choice but your comments on harm of the condition are reassuring as they coincide with my thinking.

A question that arises is the risk of stroke as a result of the procedure. I have not so far found anyone who has mentioned having experienced this . I guess that there may be a number of reasons for this , but would like to know where the figure of 1% risk is drawn from.

Kind regards

Gedbo

[Hidden]

Can you Google 2014 guidelines of international afib association? I don't know why MDs are in such disagreement about afib impacting longevity.

[gedbo in reply to Hidden]

Hi thanks Lorna -doone. It is good to be pointed to info on this matter and not have to rely on the opinion of one expert.

All best wishes

gedbo

[Japaholic]

I've just had it, 2 weeks ago with sedation, not anesthetic. The difference in my quality of life even in such a short period has been astonishing. Can you imagine after having AF since 2009 what it feels like to be in sinus rhythm for so long? It's wonderful.

Yes it's uncomfortable and sore afterwards but I'd do it again tomorrow if I needed to.

There are some welsh people on here, I'm sure they'll add their thoughts.

If AF is bothering you, consider ablation. The difference for me has been astonishing.

[gedbo in reply to Japaholic]

Hi Japaholic

your post helps me understand the variety of factors in this equation. Glad to hear your positivity on this one and hope your quality of life is maintained. More food for thought for me

thanks

Gedbo

[jeanjeannie50]

I had my two ablations under sedation only and they were fine, in fact my EP prefers to do them that way. Was mostly away with the fairies and only vaguely aware at times of what was going on. A nurse was watching me all the time and if I became too aware they increased the medication. I wouldn't hesitate to have it done this way again.

From what you have said in your post it appears to me that your EP doesn't appear to have a lot of confidence in performing an ablation under sedation only. It may be a good idea to ask on here if anyone else has had an ablation performed by him and what the outcome was.

Let us know how things progress.

Jean

[Japaholic in reply to jeanjeannie50]

Good idea jean

[gedbo in reply to jeanjeannie50]

Hi Jeanjeannie

thanks so much for sharing your experiences , there is much uncertainty for me at the moment but the uncertainty re the EP is certainly a factor and will follow your advice to see who else ahs had ablation by him and their experience of consultation.

Will certainly post again.

kind regards

Gedbo

[Hidden]

I have no experience of your drug, I was put on Flecainide at 61yo with Lone PAF i.e. no other health issues, which has made me stable, in SR for 15 months now. The lesson I learned at that early stage was the dose level makes all the difference and if you have found a drug that works don't change drugs lightly.

Taking into account all personal circumstances are different including attitudes to treatment, my approach when advised by a cardiologist and an EP to have an ablation was:

70% success rate is not high enough, I'll wait for procedures to improve

I'll know when I need an ablation as my quality of life will demand it

In the meantime, I'll not be complacent and take advice from every quarter - that's tough and slow as involves research, changing lifestyle and finding reliable Alternative practitioners but there are a lot of positives in changing. I know I have to get off the drug asap and because I'm feeling well and sleeping better, I hope to start reducing the dose in October.

Overall, do I regret not having an ablation earlier.....NO, should I need an ablation later, am I in a more knowledgeable position (thanks largely to this excellent Forum)......YES.

[gedbo]

Hi orchardworker .

Thanks for sharing your thoughts o this matter. I do think the matter of medication is a very significant one . I have my doubts whether any of them(on no 4 atm) has made a difference, perhaps the dosage ahs been the issue .

Also thanks for sharing your decision making on this matter. Your post givew me an alternative view on ablation which I do value indeed. Hope your move off meds is successful.

Best regards

gedbo