How to get medics to consider ablation as an option?

[reedman]

I'm interested to know how it was that some people are offered ablation. I've had AF for over 5 years now. Had two electro cardioversions, Failed after a few days, a course of amiodarone also failed. Now the medics have gone for rate control so I'm on warfarin, bisoprolol and losartin (was ramipril) My GP has said that ablation is not a suitable treatment for permanent AF but I have read of this Consultant a Mr. Jonathan Hyde who offers "Minimally Invasive Surgical Ablation" at Royal Sussex County Hospital, Brighton and takes referrals from all over the country. His blurb says that there are only two facilities offering this type of surgery in the country. I wonder if you or anybody else has heard of this? I would be grateful if anyone has any further info on this.

[Hidden]

I would ignore what your GP says. He or she may be be right, but I'd only accept what has been said from an EP. My GP hasn't got a clue but will quite happily make similar pronouncements that I simply ignore.

I had bad AF 10 years ago and it was 24/7. The EP laughed when he saw my week long ECG. He said because it was 24/7 it would be easy to fix with an ablation because they would know whether they had got it straight away, they ablated and got it straight away and I was completely free of AF and drugs for 8 years. BUT, I have a feeling it depends on how long you've been in 24/7 AF.

By the way, I steer away from using the word "permanent" because I've seen it used medically to describe AF that has not responded to treatment, i.e. not meaning it is permanently there, but is permanent for the rest of your life (maybe on and off) because they can't get rid of it. But if they haven't tried an ablation, how do they know? Maybe they do?

Anyhow, don't want to build up your hopes because your GP could be right of course, but just repeat that I would only take that pronouncement from an EP.

So you need to get referred to an EP I'd say, as a must if you haven't already.

Just my pennyworth! (I'm just a patient by the way)

Regards

Koll

[Hidden]

I most definitely agree with Koll GP's need to refer anyone with this condition to an EP (Electrophysiologist) find one and give her/him the details and let it be processed. Cardiologists know more than theGP's, but they deal with the internal heart function, Electrophysiologists are specialists who deal with the peripheral of the heart, meaning the veins that pump the blood to the heart. I have had to do this myself and this was the only way I got this moving. So don't waste any more time trying to convince the GP any more - some GP's don't like to admit that this condition is important enough to be referred to a specialist 5 years is too long. Good luck reedman

[BobD Volunteer]

I saw a presentation by Mr Jonathan Hyde and some where have his e mail address. He earned the procedure in USA (of course) and in fact his talk was about left atrial appendage removal by key hole for stroke prevention. I had a chat with him afterwards and he seems a character!

That said it is a pretty radical procedure and I see no reason why you could not find an EP close to you who might be prepared to take you on for a normal PVI There is a list by area on the main AFA website. Few GPs have any deep understanding of AF so it is a case of talking to the organ grinder not the monkey in my view..

Bob

[Hidden]

Another way maybe, I've just realised because it's what I did, is go to your GP and ask for a referral to a private EP for an initial consultation (an open referral?). Mine cost me £150 a visit, and I went twice.

On the first consultation, he did an ECG in his office, nothing there but said that meant nothing. So he got my local hospital to fit a monitor for a week, then after getting the data back, I had a second consultation where he told me I had just a bit of AF, so booked me in for an ablation (by him) on the NHS.

Koll

[excalibur]

I was lucky enough to see EP's both at Harefield and Exeter though I had a struggle to get referred from Barnstaple to Exeter as the consultant at Barnstaple seemed to think that it wasn't worth the effort. I had the same response in London at the Whittington and only got to Harefield by referring myself privately as I had medical insurance then.

However having gone through all this after 12 years of being in what was diagnosed as permanent AF approximately 8 of which I have been able to stay in NSR with the help of Amiodarone and 5 cardioversions (4 of which were successful) at least I have been offered the possibility of starting down the path for an ablation and talked through the issues with someone who really knows the plusses and minuses.

I've opted not to have one, but that has been my decision and I think that's the issue - you need to get to the point where you have feel you have been offered a choice

If your GP won't refer you I suggest finding a new GP, or going to see another GP within your practice who is more sympathetic

Lance

[reedman]

Many thanks everybody, very informative. Saw GP yesterday he repeated his view, "not appropriate, not without risk" etc. But he has taken me off the beta blocker and put me on a calcium antagonist (Adizem-XL) which I'm to start on Friday to try and relieve my symptoms of fatigue and breathlessness (both recent symptoms) although my AF is 24/7 I was previously asymptomatic. Electro Physiologist, didn't know their relevance I will certainly ask for referral when I feedback to GP about the drug change. Many thanks again everybody.

[Hidden in reply to reedman]

Reedman, I don't think your GP can prescribe the drugs you may need to relieve your symptoms. Mine certainly is not allowed to because she told me. Like a lot of people, I need rhythm control drugs. Beta-blockers just make me feel breathless, tired and lifeless. Completely the wrong drugs for me and many others, an EP at the Patients Day described why.

Koll

[leofric]

I had persistent AF from March last year which badly affected my lifestyle (Dizziness, breathlessness, fatigue). In August an Electro-Cardioversion failed. In a subsequent appointment with the Cardiologist I was offered three options, another Cardioversion, drug treatment or catheter ablation. the only problem was that I was expected to make a decision there and then. I chose the drug option as being effectively the status quo. After that I found AFA, learned much more about what was wrong with me and went to the patient day in Birmingham. As a result of what I learned I asked my GP to refer me to an EP who I saw within 2 weeks. He explained the risks of ablation (which need to be carefully weighed) and told me that with my circumstances he could only offer a success rate of 60-70%. He also explained that the longer my heart was in AF, the lower the chances of success would be. After a weekend of considering the issue with my family, we decided to go ahead and I had the ablation 4 weeks ago today. So far everything has been good with my heart behaving perfectly as far as I know. I have been saying to people that you can't imagine how exciting it is to be able to tie your shoelace without getting dizzy! Only slight problem has been some pain in my groin when I put weight on my leg but hopefully that will go soon.

All the above on the NHS who actually put me in a private hospital for the procedure which was a bonus, although I was only in for 26 hours, four of which were on the table for the procedure.

Hope this helps to show what is possible

[Hidden]

My EP said after one failed cardio version ablation next option I have been diagnosed 2 yes with AF that was with me 24 /7. Cardiac consultants specialise in different aspects TS of heart problems so I go with their advice mostly. Good luvk

[mumknowsbest Volunteer]

Just one point electro physiologists deal with the electrics of the heart ie the arrhythmias not the blood vessels.

Eileen

[weezergeezer]

For what it’s worth, I was only offered an ablation when the episodes increased from the first onset which was once every 3 weeks, it increased over a period of 2.5 years to 2- 3 episodes a week….absolute misery, I decided to do things differently after reading posts on this forum, became more pro- active and pushed for the ablation, I swear my GP would still have been happy dishing out pills even now!.....good luck

[Hidden]

Amazing differences in treatments offered. I was given a second ablation just on the basis of symptoms that I could hardly feel, and they weren't any bother at all. Nip it in the bud the EP said. As it happens, they didn't nip it, it went away !

[mallet-head]

Hi reedman,

don't know whereabouts in the country you are but assume it is in UK if you have identified a consultant in Brighton for this "minimally invasive surgical ablation". Sounds like the catheter ablation via high energy RF which I am about to undergo at Liverpools' Heart and Chest Hospital at Broadgreen. This hospital is considered to be a UK centre of excellence for heart treatment. The EP is a specialist named Dr Dhiraj Gupta and you can see the work that his group perform at :-

heartrhythmspecialist.co.uk This gives a good overview of their work, and all contact details needed.

The success rate of cardioversion is quite variable and depends on a lot of factors e.g..type of AF, age of sufferer, how long it has been present before diagnosis etc etc. I was 63 when first diagnosed with PAF in Feb 2013. I had a (failed) cardioversion done in my local hospital, before being referred to Dr Gupta above. He recommended catheter ablation (said likely success rate of further cardioversion was low). Your GP surely could recommend the best specialist for your condition and refer you accordingly.

Best of luck, Mallet-head

[reedman in reply to mallet-head]

Thanks for your reply. I'm down in Cornwall, my nearest EP is in Plymouth which is not far so I shall attempt to get a referral to him asap. The "minimally invasive surgical ablation" is a relatively new (in this country) procedure and is only done in two centres in the UK as I understand it. Brighton and Nottingham I think. It involves three entry points (ports) on each side of you rib cage and is conducted on the beating heart. The very best of luck to you for your op.

[mallet-head in reply to reedman]

Thank reedman,

As an after thought (after I had pressed "send" on the previous message) I remembered there is a link to a site (available from the "Arrhythmia Alliance" site - one of our communities on Health Unlocked) which will allow you to see "who's who" for heart treatment in the UK. It looks a bit like Google Maps! I've posted a link below which should take you there.

heartrhythmspecialists.org

The map would indicate, as you say, the Derriford hospital in Plymouth is your closest facility.

Best of luck with everything.

Mallet-head

[CDreamer]

Hi Redman I am not clear what is new about this procedure? I have just had 2 ablations which use a similar technique but go in through the groin, all ablations are done on beating hearts.

I would be quite wary of this guy's advertising, look on the BUPA website for qualified EP's who perform ablations. The RD&E (Exeter) have a brand new cath lab just set up (Jan) for doing ablations and a new EP from London to perform them. I think it is a long waiting list on the NHS but then that seems to be par for the course around the country.

If you have health insurance you may be able to go privately, sometimes worth having a consultation privately to get the advice from a specialist.

I agree with the other posts, we have all learned that you need to be a) very knowledgeable about AF and the treatments b) quite firm with your GP that you are not going to be fobbed off with what he/she thinks he can fob you off with.

Good luck

[mallet-head in reply to CDreamer]

Hi CDreamer

which guy's advertising are you warning us to be wary of?

regards, Mallet-head

[reedman in reply to CDreamer]

Hi CDreamer, thanks for the post. I think the essential difference is that the op is done through three ports on either side. Better to post the link I think then you'll have what I've got. It is interesting that many people have had to almost pressurise their GP to get further referral. Mine referred me me to consultant cardiologist very quickly, but after two cardioversions etc I'm now on drugs various and that seems to be the end of it. I'll have another go at him shortly!

atrialfibrillation.org.uk/f...

[CDreamer in reply to reedman]

Thanks reedman, it looks as though it is an endoscopic procedure and I can't see how that is less invasive than a catheter ablation. Also that procedure seemed to use a general anaesthetic whilst most ablations are performed under sedation and a local? Hopefully I won't need another. I would check if he is on the AFA EP referral site and if he is BUPA registered.

Very interesting though and thanks for posting the link.

Very best wishes with your 'go' at your GP, ridiculous we even need to battle with them.

[CDreamer]

The Mr Jonathon Hyde mentioned in Redman's original post.