Out of options

[skipabeat]

Hi, I just found out I can not have an ablation of any type because my heart is too remodelled. The only thing left for me to do now is amiodorone- I do not think I am going entertain taking that drug. Sooo I am going for a second opinion in May. I am so exhausted and breathless-it is all so depressing. My point is - if you have the option of an ablation consider it a blessing. I was so excited and nervous when I was told I was going to have an AV node abate- but now told no. Good luck to all of us. I have enlarged cardiomyopathy hence the permanent A-fib and damage- atrium stretched re 60... Thanks for letting me share xo

[rosyG]

Sorry to hear this- I think you are wise to get a second opinion as doctors take very different views on what is possible. Let us know how it goes

[cassie46]

Hi there - You mention a AV node ablation - is this not normally done with a pacemaker being inserted first. I have permanent AF and am not suitable for an ablation but I can have a pace and ablate (pacemaker and av node ablation). This would control my HR and although will still get AF should be manageable and I would not have to be on any meds except for Rivaroxiban. What is the reason you cannot have this done - would be interested to know.

Cassie

[skipabeat in reply to cassie46]

I have a pacemaker/defib... My doctor said because my heart is too remodelled and enlarged (re atrium septum's 60) I am glad to hear you have a solution to this AF thing. I am really hoping a second option and or opinion is favourable.

[CDreamer]

So sorry to hear that, please do let us know the result of your second opinion.

Very best wishes

[skipabeat in reply to CDreamer]

I will for sure, thanks CDreamer.

[pottypete1]

After my 3rd ablation my EP told me there was nothing more that could be done for me and I should just take the tablets with the potential of going into permanent AF sooner rather than later.

He then retired.

2 years later I was in hospital for one of many cardioversions I had when the A&E Consultant spoke to one of the then EP Consultants at my hospital who said he felt another ablation was viable and that he felt that he could help me.

The ablation produced some improvement but then my new EP was head hunted to another hospital.

I was still having PAF every few weeks.

I then saw yet another EP who said that there had been reconnections in my heart and that they were worth addressing with another ablation.

I was in hospital on the day of my ablation when it was cancelled due to an emergency.

Whilst waiting for a new date I had a phone call from the hospital telling me that an additional new EP Consultant had taken up a senior role at my hospital, he had transferred from Barts.

The hospital said I could have the ablation 2 days hence with their new EP Consultant. I accepted.

I have had 3 further ablations carried out by this EP who still cares for me and since the last ablation 9 months ago have only had one very short bout of AF.

Had I not been in hospital for the cardioversion I would still be suffering frequent AF and be under the impression that I was beyond help apart from taking Flecainide and Bisoprolol.

I know that my heart is heavily scarring on the inside of the atrium due to 26 years if AF. This is not to be confused with therapeutic scarring from the ablations.

After being told that I was beyond help I did not seek a second opinion but circumstances gave me 3 more opinions that all differed from that of my original EP.

Anyway the above is a very long winded way of saying that I think you should seek a second opinion.

Pete

[skipabeat in reply to pottypete1]

Thanks so much for sharing your story! The stars were aligned for you lol. Great how itevolved into a wonderful outcome. I am so hoping sometime well take away this crippling fatigue. I hope everything falls into to place. I will pray for that. Thanks again.

[Polski]

I suggest you try reading 'The Sinatra Solution - Metabolic Cardiology' by Stephen T Sinatra. He recommends a good multi-vitamin-and-mineral such as a health food shop would sell, for three months at least. Also magnesium (search on this forum for details about this) and CoQ10 amongst other things. Best to start on the lowest doses, and increase gradually.

If you have ever taken statins then you will definitely benefit from the CoQ10 as statins prevent the body from making its own, and every cell needs it! Again, go to a good health food shop to buy it or try online eg Nature's Best, and check that your doctor sees no reason for you not to try this. (But remember, doctors are not trained in the use of dietary supplements, so he may be very dismissive!)

[etheral]

ASK about dofetilide (Tikosyn). I had started amiruderone after initial c.f. only lasted several days but found the side effects intolerable. I was then hospitalized for 3 days and placed on dofetilide with the thought of having another c.v. after loading dose ((for which you must be continually monitored. I converted to NSR without the cv

and have been on dofetilide without side effects and in NSR for 6 mos noew.

[skipabeat in reply to etheral]

Thats a wonderful result! Thanks for that.

[Dodie117]

Just to add , make sure you see an experienced EP rather than a cardiologist. There were recommendations on here a few days ago.

[lee49uk]

Sorry to hear what you are going through skipabeat a 2nd opinion is a great way of moving forward and keeping positive. Everyone here is supporting you and we are all in this together.

[skipabeat in reply to lee49uk]

Thank you, I am looking forward to second opinion...

[Barb1]

A thought. If you can tolerate Amioderone for a short time and it chemically puts you back into SR. Then the heart will have a chance to recover somewhat and decrease in size. Then you could have an ablation perhaps. As I said, just a thought.

[skipabeat]

Hi,Its such a risk though. It can do permanent damage, however that is an awesome question- I am going to ask ! you never know. Thanks barb.