Can anyone help please.

[meadfoot]

After my last 5 day stay in hospital recently after attending A&E in the middle of the night in a terrible state yet again with AFib and Supraventricular Tachycardia (heart beat of 250, passing out every 45 seconds and coming round again, chest pain requiring intravenous morphine and intravenous flecainide and on heart monitor for the whole 5 days - absolutely terrrifying), I am now awaiting an appointment with an EP and currently have no named cardiac consultant as my usual cardiologist who I did not see when in hospital is not an EP.

I was told I would get a letter with an appointment to see an EP within 2 months. I was amazed during 5 days as an in patient and being so ill I was not seen by an EP as I was told an ablation was likely to be needed. However that was the way it panned out. Have to say the Cardiac consultants (a different one each day doing the rounds) were great and all the staff were amazing. I am always grateful for the care I have had.

I live in fear of another massive attack and although I try to live a normal life I have put holidays abroad on hold and cancelled my cruise for September as my episodes are always extreme.

So getting to my question. I don't know anything about EP's in my area and can't find out more than the names, nothing about the numbers of ablations undertaken, experience etc. I live in South Yorkshire in the north of England.

I met a Dr O'Neill from Guys in London at a AFA patients day and was impressed with his presentations. I also here Prof Richard Schilling at Barts is excellent and a Dr Gupta at Liverpool heart and chest hospital has good reviews.

Does anyone on the forum have experience of having an ablation undertaken in South Yorkshire or undertaken by any of the three doctors above.

This is not a tiny procedure and I want to trust my heart to someone I feel confident in. Our local ones may be excellent but I just don't know. I have a wonderful GP but they don't know who is best in our region either or anything about waiting lists and experience. My original cardiac consultant was fabulous but cant help now as he is not an EP.

An feedback you can offer me will be greatly appreciated, thanks in advance.

Regards

Dee.

[BobD Volunteer]

Dee firstly so sorry to read all you have been through.

There is a list by area of EPs on the main AFA website which you may find helpful. The problem with recommendations is that for every good report you may well find a bad one as it really does depend on the way patient and doctor interface. I too have met both those you mention and in the case of one as fellow members of a committee but I would never make comment about either's ability as I have no experience of being treated by them. The other comment I would makes that wherever possible I would prefer to be treated locally if possible. I live in Devon and was treated at Royal Brompton in London 9which I can say was excellent but the logistics were a nightmare on occasions due to the journey. One time my wife had to leave work middle of the day and drive a nine hour round trip to bring me home as public transport was verboten. Worth some thought. Yes I would do it again but think about it.

BobD

[feejbee in reply to BobD]

Hi Dee

So sorry you've had such a horrid time. It seems amazing that being so ill you have to wait so long to see the right person that can help , I can really empathise with you there. The trouble seems to be with regional hospitals you are never seen by the same doctor or consultant twice and as for an EP they are few and far between. Like Bob I had my ablation at The Royal Brompton in London by Dr Tom Wong ,I have to return there in 2 weeks for my 3month appointment. I am fortunate that I live in Berkshire so only a 2 hour trip there but even if I lived in the very far North of the country I would have come down to one of the London specialist heart hospitals or at least a major city hospital that specializes and is known for its cardiac care .As you say it's not a tiny procedure and you want to be able to trust your heart to someone you feel very confident with.

Good Luck with whatever you decide

Fi

[meadfoot in reply to feejbee]

Thank you Fi. It is great that you understand my predicament and I appreciate your point about getting the best EP. I will look further into this. Pleased to hear you are making steady progress and have found a EP you are comfortable with and confident in. It sounds as though things are on the up for you. Good luck and thanks again. Dee.

[meadfoot in reply to BobD]

Bob, thank you for your kind support and your experience around the practicalities and logistics of traveling far for treatment. I have also wondered how I would be received at my local hospital should I need to go back there afterwards if anything went wrong with the procedure undergone, by choice, elsewhere. Another balancing act to consider. Thanks again. Dee.

[jeanjeannie50]

Dee, so sorry to hear all you have been through - what a nightmare and I can understand why you have cancelled your holiday!!

I too have heard that Prof Schilling is one of the best EP's.

My ex boss had AF and he was cured about 3 years ago, after a second ablation, carried out by a Dr J Gill who works at one of the London Hospitals. I think if someone could possibly tell you that they have been cured by a certain EP that would give you some hope.

My EP is Guy Haywood at Derriford Hospital in Plymouth and I talked a few years ago to a lady who he cured from AF with one operation. I've had two ablations carried out by him, still waiting to see how I get on after the second one which was only about 8 weeks ago. I certainly felt so much better after my first ablation.

Did you go back into sinus rhythm naturally when in hospital? Also what medication are you on now?

I guess the problem is people only use this site when they are having problems with AF, once they are cured they may not feel the need to come on on here.

I do hope that someone can advise you.

I wonder if it would be an idea to go onto a health forum, on one of the main newspaper sites, and ask if anyone having had a successful ablation can recommend an EP?

Big hug and really feel for you.

Jean

[meadfoot in reply to jeanjeannie50]

Hi Jean, thank you for your support and reply. I went back into sinus rhythm naturally which is my usual way but this time within an hour I was off again and had to have intravenous flecainide. I am now on the drug in tablet form twice a day plus my usual Atenolol and Rivaoxaban. Not happy as things are clearly escalating.

You were helped at Derriford hospital I see and seem to have been happy with the treatment there. My cousin is a doctor at Derriford hospital in A&E. Thank you again for your response. Regards Dee.

[beano2013]

I went through 12 months of going in and out of hospital due to AF. My life was on hold and quality very low, basically I did little but sit at home. I found I had to be really pro active to get an ablation, but to say I am delighted to have had it done and am now 2 year down the line, quality of life great, it was the best thing I have ever had done. I would point out that my first ablation was not successful and a great disappointment to me. However, as mentioned the 2nd ablation has been successful and whilst I am aware I may need another one in the future (the failure rate is around 2 years plus before some need it done again), I would not hesitate to go along these lines. With regards to who carries out the ablation, I went to Queen Elizabeth Hospital in Birmingham and Dr.Lencioni carried out the procedure. Because it only takes an overnight before you are discharged I don't think location should be an issue. Equally, I believe all those involved in this procedure are highly skilled and work on a team basis, therefore you should be fine wherever you have your ablation done. It is a procedure that affects the heart, but it is a well practiced procedure and the success rate is high. One word of caution is to check what type of ablation the hospital adopt. Then look on your internet to have explanations on the various types used. I chose the most common type, but you would need to read the literature on it to determine for yourself which you felt was the safest. All the very best. Beano 2013

[meadfoot in reply to beano2013]

Thank you so much Beano for your helpful comments which have given me positive food for thought. Lots here to mull over. Regards Dee.

[lizzily]

Have been away from this site for a while and have just read your post. Oh Dee, what a dreadful time you have been having. My thoughts are with you and I'm sending you hugs across the miles. So sorry too that you have had to curtail your travelling.

I'm fortunate at the moment that things are reasonably settled for me, after having had episodes of SVT plus AF, but not in anyway as extreme as yours. I am however searching for the same information as you as I am not convinced that my local cardiology team in Devon has enough expertise in carrying out ablations. I've seen the cardio (not EP) once, and frustratingly the 24 hour ECG report demonstrating my AF etc. was missing, and the 12 day ECG recorder hadn't worked properly and had failed to record anything. The cardio just kept talking about my "palpitations" and I didn't feel he took me seriously. When I asked about ablation he said I probably would already have some fibrosis at my age (66) which would make an ablation less likely to succeed. My echo was normal and my BP etc. fine so that comment went down like a lead balloon!! He has a colleague who is an EP but I don't know whether to try and see him or ask my GP to refer me elsewhere. I have decided to phone the Devon EP's secretary and see what information I can get regarding numbers, success rates etc. I have a friend who lives near Papworth and I'm thinking of there as a possibility.

My heart too is very precious and I want to find someone I feel I can trust. I do hope things remain settled for you until you reach a decision. Do keep me posted.

Best wishes, Liz

[meadfoot in reply to lizzily]

Thank you Liz. It is a mess this AFib and SVT hassle. I have heard good things about Papworth and one respondent to my question said they had a positive experience at Derriford hospital in Plymouth. I realise it is a dicey business making recommendations 'as one mans meat' etc. but this forum brings a wealth of personal experience and ultimately we make our own decision. I hope you find a good way forward, sounds like a second opinion would be useful to you. Take care and be well. Big hug. Regards Dee.

[lizzily in reply to meadfoot]

Thank you Dee. Just decided to check out Derriford and Guy Hayward and found some great info. Why can't other centres produce similar statistics? guyhaywood.co.uk/Plymouth-E... useful data like this would make choices easier. Certainly would have felt very lost without this forum.

Wishing you well Liz

[meadfoot in reply to lizzily]

Thanks Liz. Data looks excellent. Good luck. Dee.

[SRMGrandma Volunteer]

Dee,

I just read this and I am so sorry you are at this point of worry and uncertainty. What a scary experience. I really hope you find the right EP and SOON! It is really awful that you've had to cancel your cruise and that AF is making such a huge impact in your life right now. Sending you all the best wishes and support from across the pond. Please be well. Hugs!!!

[meadfoot in reply to SRMGrandma]

Thank you SRM Grandma. Supportive as always. Thanks for the hug, always welcome. I hope you continue steady recovery from your injury. Regards Dee. (ps: my daughters pregnancy is moving forward well, week 23 now and counting. Welcoming a baby girl mid December!! Cant wait).

[SRMGrandma Volunteer in reply to meadfoot]

So thrilled to hear the pregnancy is going well. Just keep your thoughts on that baby girl to get you through this rough patch. I am steadily recovering from my injury and heading back to work on Friday. Beyond thankful that my AF has remained in silent mode throughout this recovery time. Please take good care of yourself! Here for you....

[gardenome]

Hi So sorry to hear of your terrible ordeal, I was never that bad thankfully. Anyway my cardiologist was never keen on the idea of ablation and it was really through reading the postings on this site that I decided that was the way to go. I also worked out that I wanted Prof Schilling who I saw at the London Bridge. I immediately trusted him completely and I am now three weeks post crioablation (using the freezing technique) and apart from one night early on when I had chest pains, I have had no problems at all. I am off Digoxin and now left with Sotalol (one more week to go) and Riveroxaban I do get tired but hardly surprising. I am 75, I would add that it was through this site that I learned to be more relaxed with the PAF as I took on board that I as unlikely to just drop dead, and that helped a lot. Good luck Pennt

[meadfoot in reply to gardenome]

Hi Pennt, thank you so much. Your experience is heart warming and mirrors mine so well. My cardiologist is not a fan of ablation either but has accepted it is my next required step so an EP is to come my way. I will really give thought to what you say. So pleased to hear of your ablation success and trust you will continue to go from strength to strength. Regards Dee.

[gardenome in reply to meadfoot]

Hello again. I would never actually recommend anyone, I can only give my experience. However, I would add that I don't think the location of your procedure matters in relation to convenience for you or others. London E1 was not at all convenient for me, the right person is worth the trouble for for what is hopefully a one off experience Best wishes

Penny

[meadfoot in reply to gardenome]

Thanks Penny. You make perfect sense. My GP said if she was undergoing surgery or a procedure the skill of the person doing it would be her only consideration. I certainly did not think you were making a recommendation but rather describing your personal experience which is helpful in itself. Did you have to go private or was it NHS. Dee.

[gardenome in reply to meadfoot]

Hi Dee I have health insurance which would not cover London Bridge Hospital so Prof Schilling carried it out at the London Independent Hospital which Aviva were OK with and it was fine Penny

[meadfoot in reply to gardenome]

Thanks Penny. Dee.

[stormcloud in reply to gardenome]

Hello Penny,

I was very interested to see that you recently had a cryoablation performed by Prof. Schilling as I have just been put on the waiting list to have the same

procedure with him at Barts hospital, How did you find the whole experience?

The arrythmia nurse told me that it would be performed under sedation and

not general anaesthetic which I'm not too happyabout,Were you just sedated? I keep changing my mind about having it,I have PAF and on the good days I convince myself that I don't want it or need it then I get a few 10 hour episodes and change my mind! I have been prescribed apixaban as I need to be on an anticoagulant for 3months prior to ablation but have been too scared to start taking it,Do you have to have any regular tests while taking the new anticoagulants such as liver or kydney function?How long have you been taking riveroxaban and have you had any problems?

Will you have to stay on it as I beliieve Prof. Schilling thinks that there is still a risk of stroke after ablation. Any information you can give me about your experience would be very welcome. Did you have to travel far as that is another concern for me as I live in Somerset and have mobility problems at the moment due to the fact that I am waiting for a hip replacement. Which should I have first,I wonder, the hip op' or the abation? By the way, I am 79 years old.

Hope things continue to go well for you and it was all woth it,

[meadfoot in reply to stormcloud]

Hi stormcloud, just read your post to Penny. Pleased you have had an appointment with Prof Schilling. I take Rivaoxaban and have not had any side effects. Apixaban sounds good too. Good luck. Dee.

[stormcloud in reply to meadfoot]

Hello Dee, Yes the ablation would be done on the NHS Glad you are not experiencing any problems with riveroxaban. How long have you been taking it and how old are you?

[meadfoot in reply to stormcloud]

Good to know re NHS and Professor Schilling. Re Rivaroxaban, I been taking it since February this year. I am in my early 60's.

[stormcloud in reply to meadfoot]

Re Rivaroxaban. Thanks for your reply. Hope you didn't mind me asking your age but some of the new anticoagulants have only been through trials on people up to age 75 years old

and I am past that. Still haven't started the Apixaban! Do you have any regular tests because you are taking Rivaroxaban or did you need any prior to starting it? Hope you are feeling better again now.

[meadfoot in reply to stormcloud]

Hi stormcloud. I did not have any special tests done before being prescribed Rivaroxaban but had a blood test one month after (I have a very good and cautious GP), another at 3 months and 6 months all of which were absolutely fine. Will have bloods done 6 monthly but then I already do for my other drugs - Atenolol, Flecainide and now Rivaroxaban. Hope this helps. Awaiting EP app at the minute, thanks. Dee.

[stormcloud in reply to meadfoot]

Thanks Dee.. You are lucky having such a good GP. Hope you get your EP appt. very soon..

[meadfoot in reply to stormcloud]

PS stormcloud, is the ablation being done on the NHS with Professor Schilling. Dee.

[Hidden]

Hello Dee

I've only just read your post and must say I really do feel for you. Your AF does seem to be much worse than most. I would not worry too much about the ablation itself as it does have a very high success rate. I have had three now (at Derriford but with David Tomlinson and not Guy Haywood). The first was good for quite a while but I had to have another 2 years later as my rhythm was very unstable and the bouts of AF did not go away on their own but always required a cardioversion.

As the second one didn't really improve matters Dr Tomlinson decided to do a Pace and Ablate procedure which was done at the end of last year and since then my quality of life has vastly improved. The pacemaker causes no problems although it can't cure AF. It just isn't nearly so bad.

I really hope you will be able to make a decision soon and that we have been able to help you in this.

All the very best

Dot

[meadfoot in reply to Hidden]

Hi Dot. Pleased you are much improved and thank you for your support. Everyone's comments have really helped. This forum is full of new supportive friends for which I am very grateful, it helps to make this condition more bearable. Trust that you will continue to improve. Dee.

[Hidden in reply to Hidden]

I have just joined after reading your post. I would be very interested to learn about your experience as I have only just recently been referred to Dr Tomlinson. It would be reassuring to know if as an NHS patient I can approach the secretary and find out where on the waiting list I may be. I understand that there is a very high success rate if one has intermittent AF but if my paroxysmal atrial fibrillation progressed to persistent AF then the success rate would be lower. So I hope it will be caught in time. I would be very grateful for you reply.

[Hidden in reply to Hidden]

Sorry I meant to address this to Dot. Hello Dot.

I live near Exeter and have been referred to Dr Tomlinson as there has been a cut in money to extend ablation services at the Royal Devon and Exeter Hospital. This has just happened out of the blue. They are no longer adding patients to their waiting list. I was very lucky to get my ablation for Atrial Flutter done. At least I have some better quality of life. It was horrendous before. I could not move at night without unexpectedly triggering off an episode pretty frequently during the past year. My life was very limited and the episodes were rather debilitating. They are to some extent now. It was suggested that I take Sotalol but I am not keen on taking it because of the side affects. At least at the moment, my mind is relatively free and fluid when I am not in AFib but I have to watch myself, in that I do not do too much or what is considered to much in relation to my condition. Otherwise, I would be a fit and active near 60 year old.