AV NODE ABLATION

[chipper13]

I would like some advice from anyone who has undergone an AV NODE ABLATION. I was diagnosed with AF over 10 years ago, during that time they tried for about 4 years to treat me with Warfarin, Amoderone and Bisoprolol which I found very difficult to tolerate. They then tried Flecainide which helped control the AF better, but again after having a heart rate of about 55 for 2 years the AF returned with vengeance I underwent an ablation which seemed to have been successful until they stopped the meds which within a week of stopping my AF returned. I was put back on Flecainide which helped me, I was having only occasional episodes of AF until my symptoms became severe again with heart rates way above 100, therefore I underwent my 2nd ablation which again gave me relief for the next couple of years. I was still taking Flecainide but again the AF reared its ugly head so I underwent my 3rd ablation for AF and an atrial flutter. My surgeon stopped the procedure part way through after treating the flutter but was having difficulty getting through into the heart chamber to complete the AF treatment. Therfore the ablation was terminated. Following this I was again still taking Flecainide but the AF continued to get worse for the following months. It was then decided I should be fitted with a pacemaker. After having the operation and pace maker fitted I continued to take Flecainide and was put back on Bisoprolol which again I could not cope with. I was very breathless and struggled to even walk about, so my medication was changed again and I was taken off the Bisoporolol and was prescribed Verapamil which made me feel a lot better. My heart rate was 70 all the time for about 3 months which is the rate my pacemaker is set to kick in at but again this has become ineffective. My heart rate is about 110 and all over the place my surgeon has told me I can have a different pacemaker fitted which will keep my heart rate constant, although this doesn't cure the AF I will not require the meds. Has anyone had this done? and how are you after the procedure? I know there is no going back after this operation so any advice will be greatly appreciated. Thanks for any feedback.

[rosyG]

Hi,

Others who have had this done will advise- just wanted to say sorry it's been so difficult an hope this plan will stop the problems

[wendicarro]

Hi, Sorry you are having such a rough time! Your story sounds very much like my own as after three unsuccessful ablations I had a pacemaker fitted and was just as bad with that for the three months until I had an AV node ablation.

I no longer need to take arrhythmia meds as I was on such a high dose they made me feel ill!

All I take now is blood thinner rivaroxiban ,candestartan to help the blood flow better and that's it, I still have AF but it does not have unpleasant side effects as before.

I have got my life back.

I hope you get sorted.

Wendi

[chipper13 in reply to wendicarro]

Thank you for telling me how you feel i know AF is differant for everbody,but we do seem to have alot in common. I am pleased to hear you are alot better, thanks for the very helpful feedback

[seasider18 in reply to wendicarro]

Did you have a single or dual chamber pacemaker fitted? Presumably at the time the pacemaker was fitted you did not expect to need an ablation.

I had talked to the consultant about a future ablation when my pacemaker was fitted and was suddenly offered a cancellation the other week that I turned down as I have not been taking warfarin due to stomach ulcer symptoms.

At an outpatients appointment today a registrar said that it would be an AV node ablation and that it is not necessary to be on warfarin for that. I am rather dubious about that statement and have just read a couple of hospital write ups on the procedure that say otherwise.

See before admission.

uhs.nhs.uk/Media/Controlled...

[wendicarro in reply to seasider18]

Hi,

I had the pacemaker fitted and having the AV node ablation was not discussed at that point, during recovery I was worse than ever with AF and spoke to my arrhythmia nurse as I still could not go to work or do any daily tasks without feeling breathless and raised heartrate, I was then put on the list for the ablation and had it about four months later.

I have never felt better! Do still get occasional arrhythmia but no awful side effects from it.

I am back to work after nearly two years and life is good.

Good luck in going forward.

Wendi

[seasider18 in reply to wendicarro]

When taking my BP my heart rate has been between 65/86 on my monitor but my pacemaker evidently shows highs of up to 130 bpm but I never feel more than a flutter.

Evidently the pacemaker does not record the times of it readings. As my BP is always high when I waken up in the morning I wondered if prior to then was when my heart rate was up.

[wendicarro in reply to seasider18]

Not quite sure, I do remember when I had pacemaker check after ablation I had recorded some dates which co- insided with the pacemaker readings.

I have a dual chamber fitted. The highest my heart rate has gone since is about 90bpm.

[seasider18 in reply to wendicarro]

The cardiologist phoned the clinic and asked them to check my pacemaker to save me from coming back for my actual appointment in two weeks.

The person doing it was not at all pleased and held his magnet over my pacemaker for less than five seconds before saying that's it done.

He was unwilling to have any discussion on the results and when I asked he said that it did not record times with the readings. If so it is rather pointless..

[Polski]

Have you tried a good multi-vitamin and mineral supplement, magnesium, healthy-eating and life-style changes? These won't solve all your problems, but may well make the symptoms far more manageable and less distressing, and the meds easier to tolerate. Any medicine is a toxin which requires processing in the body. If we are lacking in the necessary vitamins/minerals to process them then the side effects will be much greater . . .

[chipper13 in reply to Polski]

Thanks for the advise hope you keep well

[mumknowsbest Volunteer]

Hi

Firstly a pacemaker does not stop the af, it actually stops heart rate going too slowly so they can increase the meds without any fear of slowing heart rate too much.

An AV node ablation does not stop the af, it just stops the symptoms. The pacemaker controls your heart rate so it doesn't matter what the atria are beating at , your pulse stays regular.

You may still be aware of some fluttering in your chest, but you may not.

I found it a tough decision to make and in my case I have not been able to reduce my meds because I was uncomfortably aware of the af. That has settled and I can now do a lot more than I could and am not worried about the af kicking in so holidays and travel are much less stressful

Hope that helps

Eileenp

[chipper13 in reply to mumknowsbest]

Thanks for your feedback i was aware that the pace maker stops my heart going too slow. Could you tell me how you feel when walking up hill or climbing stairs am i right to presume my heart will stay at the same rate all the time. I would like to say a big thankyou for the feedback

[mumknowsbest Volunteer in reply to chipper13]

The pacemaker is set to adjust. Called rate response. So pulse does go up and down. My problem is breathlessness which doesn't seem to have improved

[chipper13 in reply to mumknowsbest]

Thanks you for letting me know hope you are keeping well.

[karim123]

really iam like ,15 yers for AF , on sotalol and aspirin , but I found some food may cos AF , as I have bet of gaz , so 2 weeks start to keek of again , seen my gp gave me lanzaprazol , that help , I still have bet of keek of but not that much , I thing ablation is the best way to stop AF ,

[Hidden]

You poor thing! I do feel for you. I had an AV node oblated after 50 years of it not being understood & actually called psychiatric by some! bu, I also had parexysmal (spelling!) tachycardia

I was healed of the worst of it & the atrial fib. but still less violent attack that were manageable by rest.

Now, with age, these symptoms are more severe & I also, am finding the drugs impossible - cutting down the dose as much as I can.

I realize my compound deformity, & the extra AV Node was not the same as many other extra pathway or bundles -- but we all suffer so much!

Forgive me for mentioning prayer. But, I came to the conclusion that I could only get the strength to get through with the hopeful words of my worn- out bible & with the comfort of those who understood.

I did witness a remarkable testimony by a Dr. who had prayer & anointing by a gifted minister -- not the types on TV & money making counterfeit ---But, he had been prayed for months before & had come back to testify his AV of years duration, had been healed.

I am not preaching!! I do not belong to any religion as such - but some biblical Christians do have results with prayer & in my own case, I was protected so many times from the efforts to have psychiatric treatment, even to being locked in a psychiatric hospital for a week - -- & prayer alone enabling my release by the Supreme court -- by the only person who would have helped being miraculously sent to me just before the incident, acting to get me out --- Plus hospital staff turning away each time from me with injections & drugs in their hands, in the days when all around me people were screaming out against these injections & being locked in a padded cell for protesting.

I actually went on TV - in those 70s - to expose this hospital now closed down.

So, at least times have changed as the electo. research brought knowledge.

When we go for our oblations, it is fitting to have faith that it will be successful.

I had many praying, as I could not have endured another attack - nor should I have survived a lifetime of this, according to Drs.

I only tell this to ensure all those suffering, that we DO have a Lord who promises that suffering will one day cease, & that when He rose, He said He would send another Comforter - The Holy spirit. --------I pray for you all.

[chipper13 in reply to Hidden]

Thanks for the reply,and your advice. I have not been through what you obviously have,so i will take a great deal of comfort from what you have said. Kind regards

[seasider18 in reply to Hidden]

I did not understand what you meant by:

"I realize my compound deformity, & the extra AV Node was not the same as many other extra pathway or bundles"

[Hidden]

What I meant is, that there are various causes of fibrillation. -- & tachycardia which I also had.

In my case, I was born with an extra AV Node & various faults in the 'wiring' of the heart as a result.

I had catheter oblation to eliminate one of the nodes.

Actually, I I would be interested to hear of anyone who has had similar.

I am not very knowledgeable about the differences in cases needing oblation, but presume sometimes its to eliminate faults in the wiring of the nerve tracks & other times, the arteries. In my case the center node must have split in two when I was being formed in the womb. --- amazing, as it was not understood for 50 years & I was accused of being psychotic for believing it was 'electrical' because my electronic engineer husband understood it to be. Eventually, after much condemnation, he was proved correct. through all this, I learnt one thing & that was to keep praying ! So, it was not all without some advantage!!!!!!!