I have been a forum member for a while but not that active- only posting and responding a couple of times but would be grateful for any feedback from anyone who is seeing an EP or had an ablation at King’s. My PAF was diagnosed In 2010 but seems to have become a lot more frequent in the last year or so. I was seeing an EP for yearly reviews until 2017 but was then relegated to just a yearly telephone consultation with an arrhythmia nurse. I have had just one of these in which she said my 12 episodes this last year of anything from 4 hours to 12 hours was acceptable and she would review me in a year. A month later I received a copy of her letter to my GP in which she said that in view of my increasing number of episodes she was going to refer me to one of the consultants for consideration of invasive treatment. This was nearly 4 months ago and I have heard nothing more.
I was not overly happy with the EP I was seeing as his attention to detail was not great and combined with the arrhythmia nurse’s handling of my case, I am loosing confidence in the department.
I am hoping that this might be just a glitch and that others have more positive experiences to offer. At present I am
torn between chasing them up about an appointment or asking for a referral from my GP for a second opinion / private consultation elsewhere.
I would be grateful for any comments.
Written by
Londonlass
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Second opinion private consultation. Important to have some belief in your advisers and to feel in control as part of the team. I swopped cardios, turned down the EP's advice for an ablation (similar experience to you) and have been AF free for 5 years on Flecainide.
Same screnario here although I have seen 3 EPs and am on my second cardio, all on NHS with one exception. All EP’s wanted to ablate and couldn’t comprehend any alternative . 1st cardio prescribed a shed load of the usual pills, not explaining the relevance of any of them and whilst I did see him at six monthly intervals, it was a pretty arid experience and he was clearly bored as was I. The latest and hopefully last cardio actually listened to me and recognised that my other health issues could cause complications and challenges to any ablation procedure. We went back to square one, assessed and rejected certain medications in favour of others. I also see a naturopath and have made dietary changes, (see Nella’s posts for examples) and whilst he finds this amusing rather than relevant, he says he will keep an open mind. So yes, seek other opinions and options until you find someone who listens to your concerns and is able to see you in the round, not just a hospital number. Good luck.
Thank you for your quick reply. I presently take the lowest dose of bisoprolol which no longer seems to be keeping things in check. It might be time to look at other medications. I need to think hard about the next step.
Hi Londonlass.I have been under King's for several years with PAF too and have had a mainly positive experience. My PAF seemed to be progressing despite flecainide so they advised I had an ablation.However, I was really nervous about it so went to see Dr Oliver Segal privately. You can obviously self refer for this.He was very helpful but agreed with King's regarding the ablation despite me having far fewer episodes than you are experiencing. He was also very complimentary about King's especially as they use GA for their procedures unlike Bart's which is his NHS base. He did recommend two particular EP's if you would like their details. Despite his recommendation I delayed the ablation as I didn't want to be on a NOAC during winter(!) and for some reason my PAF has diminished to the point where it only troubles me very infrequently. I now, like you have yearly telephone consultations with the Arrhythmia Nurse and usually find them very helpful, especially a particular nurse. It must be very frustrating and confusing to find the letter did not reflect what you had discussed and I guess the best place to start may be to ring and ask why this happened. As secondtry says, it is really important you trust the team looking after you and as a nurse myself I am very keen on working in partnership with people.
Hi Londonlass.He recommended either Francis Murgatroyd or Paul Scott. I have met Dr Murgatroyd several times and really liked and trusted him. He apparently specialises in RFA while Dr Scott performs cryoablations. I hope you get the answers you need so you can plan a way forward you’re comfortable with.
Thank you very much for this. Neither of these Consultants is the EP I saw, so that changes things a bit. I will try and speak to the arrhythmia nurse too before I make a decision about getting a second opinion.
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