Looks Like it’s Back For Good

[Froggy]

Hello Everyone

Two ablations, 3 and 4 years ago and 3 years NSR, AF has decided to pay me a visit. It happened at the beginning of December - at first, about 10 days on, 3 days off and has progressively got to 0 days off.

My GP has more or less told me that there is nothing further that can be done except increase my dosage of bisoprolol to control my heart rate. I am taking warfarin too for the past12 years.

Is that it? If so, how do I cope with the breathlessness and dizziness long term? Is the GP right in saying what he has said, do you think?

Froggy x

[lms0006]

3 ablations did not hold in permanent AF now

[MummyLuv in reply to lms0006]

Please look into mini maze as an option for you if you are unhappy being in permanent afib

[UScore]

Can you not get seen by an EP Cardiologist for other options?

[Froggy in reply to UScore]

My GP thinks that it is not worth it for some reason and that “there is nothing else that we can do”.

[MummyLuv in reply to Froggy]

I don’t think that is true Froggy, ask your GP to refer you to a cardiothorasic surgeon for an opinion on a mini maze. He/she likely will never have heard of it so have a read of my posts.

[Buffafly]

Maybe you could try another drug to control the rate (what is the AF rate?) I have noticed that many people posting in PermAF seem to be fairly comfortable so maybe you might get used to it but as Uscore says not before you have consulted an EP.

Badger posted two interesting scenarios recently, maybe worth a read if you haven't.

[Froggy in reply to Buffafly]

My AF rate is usually no lower than 85 and currently the max has been 110. GP says that I shouldn’t be feeling bad with my AF as long as my rate is controlled. Before this my rate was averaged around 55. Thanks for the advice re Badger, I will have a read.

[Hidden]

Sorry to hear your news Froggy. I suggest you should ask to be referred to see an EP as soon as possible. If you have confidence in the specialist who performed the procedure(s), perhaps you could consider a private consultation with him/her. Generally, GP's are not best placed to comment on suitability for treatment unless of course, your there are specific notes on your records, even so, there have been advances and you have the right to get proper advice. Good luck

[Froggy in reply to Hidden]

Thank you, I will approach him again. Due to see GP on 10th Jan, is that soon enough do you think?

[Froggy in reply to Hidden]

Just out of interest, how much would a private consultation cost?

[Hidden in reply to Froggy]

Obviously charges can vary, but a consultation should be around £250. You need to be careful though and make sure the EP is made aware that you are not an "insurance funded" patient. They are likely to want you to have an ECG which could cost around £60 or so but an echocardiogram would be significantly more, so check out these rate at the time of booking. 10 Jan is not far away and I would certainly wait to see what your GP has to say first and it would be worth asking if the surgery can provide an ECG and if so, retain a copy for later. If he does agree to refer you, the wait to see the Consultant could be considerable. Again, it all depends on local demand! Best of luck.....

[RichMert]

2 ablations 4.5 years ago and I still would not trust any advice from a GP over the condition or any treatment. So he / she wants to reduce the speed with Bisoprolol but what about the underlying issue. They fixed the AF once and 3 years was a good indication that the original ablations were worth it. You do not say how old you are but, I hope this is not being used as a factor. I would insist on speaking to a consultant.

[Froggy in reply to RichMert]

Thank you. I am 66 years old.

[RichMert in reply to Froggy]

not that old then. I would be pressing for another ablation, should be easier for them to find if permanent. You are getting me worried now, are we all on borrowed time with these ablations?

[Hidden in reply to Froggy]

There is a LOT that can be done to help you live a good life with afib. But you probably won't discover how through a GP. Try to find an Electrophysiologist. This is who treats a-fib. Please check out a few of my posts. Maybe they will give you some ideas. I am living very comfortably with afib. Diagnosed in 2011, now 73 y.o. It's been something of a winding road but worth it. Goodluck with finding the best treatment path for your particular afb problems. irina1975

[dmac4646]

if you are symptomatic have you tried rhythm control ?

[Froggy in reply to dmac4646]

According to GP, rate control is the most important thing and so no mention of rhythm control meds.

[Paceygirl74]

No your GP is WRONG. Speak to your consultant. Make an urgent appointment. I had 10 AF ablations before mine worked. It is incredibly disappointing when AF comes back especially so far down the road, but this definitely is not the end. I'm sure there's more your consultant can do for you. Keep at it don't give up. Make a nuisance of yourself if that's what it takes. Don't take No for an answer and certainly not from your GP. Good luck. I understand your frustration.

Vicki

[Lilypocket in reply to Paceygirl74]

Crumbs 10 ablations! You should change your pseudo to Ablationgirl , Vicky. 🙂I'm 6 days past my first. Great you knocked it on the head finally 👍

[cassie46]

Hi - I have permanent AF and went to see a EP privately last August because I was getting no where with my cardio at my local hospital. I chose Papworth, cost was £275 for EP and £65 for ECG. I have never had an ablation (I have been told by EP it was left too long) so there is a final thing that can be done that is a pace and ablate. This is where a pacemaker is fitted and then the AV node ablated (your natural heartbeat is destroyed) then pacemaker takes over and is your heartbeat. This will not cure the AF but having a normal heart rate would mean I can come off drugs and only take a NOAC. This will all help with making the heart pump more efficiently. I asked to go on his NHS list at the consultation and he said yes.

He needed further tests a Echo (had one done at my local hospitol a few weeks before I saw him, but he said it was poor not enough info) and a 24 hour ECG monitor, had these done on the NHS a few weeks after seeing him. The echo that I had done at the local hospital I was in and out about 20 mins, the one at Papworth was nearly an hour, she did far more scanning in different areas, under my heart and even the arteries in my neck!

Pace and ablate is the last resort - I am still mulling it over.

Cassie

[Paceygirl74 in reply to cassie46]

Cassie

That's exactly what I had done 3 years ago and I've never looked back since. It was the most frightening decision I've ever made but the best. My surgeon didn't want to do it because of my age. I was considered to young for such an aggressive op. He tried loads of other ways to fix my heat. By that time my heart was so unstable in a space of just 5 mins it was going from 70 to 120 to 90 to 150 bmp. It was completely out of control (to many ops had damaged it beyond repair).

I can now even run for a bus and still talk to the bus driver. I can climb stairs and be fine I can dance around the house and be fine.

The only thing it doesn't like is if I suddenly turn over in bed or reach out of the bed for something on the floor It picks up speed then as it is set to motion. Speeds up a bit but only for a few seconds.

The thought of this op terrified me but looking back I wish I'd let him do it sooner.

Vic

[Hidden in reply to Paceygirl74]

Hi Vic, Glad you're doing well with pacemaker and ablation. I feel the same. Had mine in 2016 and ir I had known how much better I would feel I would have done it a LOT sooner. irina1975

[Hidden in reply to cassie46]

i finally had a pacemaker and an AV node ablation in Nov 2016. This was the answer for me and I've never felt better. Was able to get off cardiac drugs which caused me terrible side effects. The only med left is coumadin. I want off that and am scheduled for a procedure I've requested-a Watchman Procedure-this coming Jan 15, 2018. This will enable my electrophysiologist to wean me off blood thinner within 4-6 months post procedure. Other than side effects from the blood thinner I am doing fine. irina1975

[MummyLuv in reply to cassie46]

Hi Cassie, pace and ablate may not be your only option, mini maze procedures may also be an option, pls see 4chickens post. She is having this instead of pace and ablate, I also had a mini maze for persistent afib, pls see my posts, johnMiosh has the same procedure 5 years ago and remains afib free. Ablating the AV node is permanent as you’ll be mulling over.