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Pacemaker and AV Node ablation? Mini-maze?

journeyart profile image
30 Replies

Just returned from visit to EP here in Scotland. Having taken myself off of Amiodarone (200mg) and Bisoprolol (10mg) and Ramipril(5mg) back in the Spring of this year because they weren’t bringing my rate down below 120, I initiated lifestyle changes, increased supplements including high dose magnesium, focused on weight loss, and was feeling a whole lot better. Not even a small glass of wine and I lost 18 pounds! But my heart rate kept slowly increasing….as did the size of my left atrium (unbeknownst to me until today’s ECHO).

Note: He offered me an ablation last year at this time and I decided to try lifestyle changes, supplements, etc. Perhaps a big mistake.

I’m now at 145-150 resting pulse and a 5.9 LA size! Apparently I am out of range for a PV ablation (above a 20% success rate) and he will not do it nor does he think any other doc will. He recommends going back on Bisop starting at 2.5 and going incrementally to 15 if necessary and adding Ramipril back in. I now become a Bisop zombie again….but, nevertheless, a walking zombie). Also he offered me a “Pace and Ablate” the AV Node. He can put a pacemaker in next month, give it 2 or 3 months to settle in and then do the AV Node ablation. I’m 70 years old, have been in good health all my life until this started in 2014.

Does anyone know of any other options? For instance, is a mini-maze a possibility in order to avoid the Pace/Ablate?

Also, for anyone out there who may be in a similar situation (high heart rate and opting for lifestyle/supplements instead of ablation), if I had it to do over again, I would go for the ablation.

Best wishes to all,

Marcus

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30 Replies
BobD profile image
BobDVolunteer

Or both! Like I always say, ablation stands the best chance of improved quality of life and a drug free regime and early intervention prevents things progressing to your stage. Changes in life style will often help AS PART of your ongoing treatment.

journeyart profile image
journeyart in reply toBobD

Both, as in PM and Node ablation? As I understand it, the Node ablation (cutting off the natural heart beat) immediately brings the heart rate down too low...as in 20 or 30 and then the PM picks it up to normal. And this procedure is permanent. Then again, at 70 years old, how permanent am I?

Thanks Bob. You were one of several good people last year who advised me to go for the PV ablation. I wish I had "taken it more to heart."

BobD profile image
BobDVolunteer in reply tojourneyart

Both as in procedure AND life style. Yes you become PM dependent and it won't stop your AF as the atria is not affected by the PM. What it does mean is that the ventricular rate is organised by the PM regardless of your bag of worms. I'm 70 as well and hope that should I ever need a PM I would need at least one battery change.lol Not many of my ancestors died much before 90.

journeyart profile image
journeyart in reply toBobD

Thanks Bob. May you live well and long may you live!

You may find reading Mellanie True Hills account of mini maze procedure helpful at StopAfib.org. I don't think this is carried out very widely in this country although I believe that Jonathan Hyde at my local Sussex Cardiac Centre performs this operation.

Sandra

journeyart profile image
journeyart in reply to

Thanks Sandra. I subscribe to that site as well and...well, at least a year ago, Mellanie was a big promoter of the mini-maze. I'll revisit that video.

annlynne profile image
annlynne in reply to

and the team at the Glenfield Leicester. I'm waiting for op. in the new year. Had to refuse opportynity for this week as my hubby has kidney cancer and my mind is not in the right place for recovery.Happy Christmas to everyone and a Healthy2019

Annlynne

in reply toannlynne

Wishing you well for your operation and also recovery/ improvement for your husband. Hoping 2019 will see better health for you both.

Please do let us know how your op goes.

Sandra

Mike11 profile image
Mike11

I'm really not convinced on the effectiveness of the Maze procedure. Certainly didn't help me when they did it during my bypass.

Are you monitoring your blood pressure. Ramapril is a very effective drug at lowering the BP but can go too far. I just monitor my BP every morning and if it's too high I take one, usually once per week. Monitors cost about £10 in most chemists.

Also if bisoprolol has bad effects on you, as it did on me, ask him to try you on a calcium blocker (Verapamil) first. This worked well on me for about three years.

seasider18 profile image
seasider18 in reply toMike11

Why just monitor your BP in the morning? Mine is very high every morning but normal by lunch time whether or not I take a Losartan.

Mike11 profile image
Mike11 in reply toseasider18

Well obviously you may be a special case but for most people monitoring BP when you get up each day gives a good reference point to decide whether to take a BP reducing drug or not as the test at that point is independent of external factors such as stresses at work. But I totally agree we are all different and need to find our own best strategy for dealing with our ailments.

seasider18 profile image
seasider18 in reply toMike11

Do you only take a med if you reading is above a certain level? Did your doctor tell you to do that? What is your bench mark? Everyone's BP fluctuates quite widely over 24 hours.

Mike11 profile image
Mike11 in reply toseasider18

Yes - for me after keeping track of my BP across the day for a couple of months my Cardiologist and I decided if it's above 125/80 on waking up to take one. But usually it's around 110/70 at that time.

seasider18 profile image
seasider18 in reply toMike11

128/80 in the morning I wish!

My highest in the morning this month was 190/117 but by night 107/64 and I tend to take my Losartan between 4 and 5am when I get up to the toilet.

Are you diabetic as they want it so low?

journeyart profile image
journeyart in reply toseasider18

I've been taking Ramipril (2.5 to for two years and then 5mg for 8) for close to ten years. Prescribed not for hypertension....but to "help" the heart. My blood pressure remained the same for those many years until Afib came along, bringing with it Bisop, amiodarone, etc...and then BP began to go on the low side...90/68 generally. When I stopped Ramipril this summer, BP went back to normal. It has, again, been prescribed at 2.5 to begin. We'll see how it goes. Thanks seasider...all best to you.

seasider18 profile image
seasider18 in reply tojourneyart

I took 5mg Ramipril in addition to Verapamil for about three months some years ago and was going around like a Zombie, light headed and dizzy with it not doing much for my BP.

I was intolerant to Bisoprolol at even 1.25mg and Amiodarone gave he a tremor, floaters and deposits in my eyes and disturbed my equilibrium.

annlynne profile image
annlynne in reply toseasider18

Oh boy, Amiodarone gave me a terrible tremor and sweats and nausea. My cardio has taken me off it now. Had cardioversion in summer , that worked only for a couple of days. I seem to be stable now thank God. My blood pressure has always been text book, never smoked , gave up any alcohol 35 years ago. waiting for PM and AVnode ablation, just wary of being called in as worried no beds and it will be cancelled also my husband is ill now. Getting old stinks.

journeyart profile image
journeyart in reply toMike11

I was first prescribed Ramipril back in 2009 by an interventional cardiologist in the states to be used to help keep the LA in right size. My blood pressure was normal. What happens with me when I take it is that my normal blood pressure drops.

I asked about a calcium blocker and EP said Verap is not good for an enlarged heart....must go with Bisop only. I'll dust off my monitor and begin using it again once I start the Ramipril next week.

Thanks for your reply.

Mike11 profile image
Mike11 in reply tojourneyart

I do worry that so many cardiologists don't like Verapamil. It provides an alternative treatment path that may or may not work, but unlike a beta-blocker it does have an element of rhythm control as well as rate control. However there are reports of enlarged aortas with it so as with all drugs it's horses for courses and if administered it does need close monitoring, as do all of these drugs we on this forum take for our condition.

seasider18 profile image
seasider18 in reply toMike11

When I moved to my present location nine years ago and registered with my GP and told him my medications he commented that Verapamil is not prescribed very much nowadays.

Mike11 profile image
Mike11 in reply toseasider18

Oddly that is what the cardiologist who performed my post-heart attack angiogram said. But after a near death experience with bisoprolol he put me on it and I was ok on it for three years until it lost its effectiveness on me.

seasider18 profile image
seasider18 in reply toMike11

I think that they all lose their effectiveness after some time and may even then cause side effects.

How did the bisoprolol affect you?

Mike11 profile image
Mike11 in reply toseasider18

I'm asthmatic but it's well controlled by seretide so the consultant thought it would be ok. But in fact it almost killed me.

seasider18 profile image
seasider18 in reply toMike11

That must have been frightening. Talk about kill or cure.

SRMGrandma profile image
SRMGrandmaVolunteer

Well the good news is that lifestyle changes before and after ablations result in increased success, and if you were overweight you were wise to lose the weight because the evidence is clear that that affects AF, so that's all good. However, it sounds as though you are at the point where you need to do an ablation. Procedures similar to the Mini-Maze typically have a higher success rate than a catheter ablation, and there is the new FIRM ablation with a much higher success rate than a classic technique ablation. If I were you I would get a couple of opinions from experts and weigh the evidence. You are only 70....lots of good years ahead so be brave and get this fixed! Good luck as you make your decision.

journeyart profile image
journeyart in reply toSRMGrandma

Thanks Grandma....and I love your photo! I just wrote to Mellanie Truehills to see if she is still hot on MM. EP over here shook his head when I mentioned FIRM....he doesn't and most don't do it...says it's still in trials. But what I've read is all good news. I think I'll get an opinion or two from the states. Yes, after all, I'm ONLY 70!

Thanks for this and all you do for all of us!

SRMGrandma profile image
SRMGrandmaVolunteer in reply tojourneyart

Funny, I was just thinking I need to update my photo ;-) I was trying to figure out how I did that... I know the FIRM ablation is being done at Stanford in California, but not sure how many other centers are doing it. It does look promising for sure. Good luck as you find your best solution. You'll keep us posted, I hope!

journeyart profile image
journeyart in reply toSRMGrandma

Yes, will do. Thanks again.

Polski profile image
Polski

I made the same mistake as you to start with. I tried lifestyle approaches, but fortunately also kept the minimum of bisoprolol (2.5mg), which I can manage on. It seems the heart rate needs to be kept down in order to prevent enlargements to the heart. You might like to read 'The Sinatra Solution - Metabolic Cardiology' by Stephen T Sinatra. His protocol is not cheap but it is doable, and provides an alternative approach to strengthening the heart, which, according to him, can be safely used alongside drugs, and should help to move things in the right direction, if he is to be believed. I started with the minimum dose of the recommended supplements, and then increased as I became confident with them, towards what he recommends . . . the basic items beyond a good multi-vit and mineral are - CoQ10, L-carnitine, D-ribose and, of course, magnesium.

Best wishes, Beth

journeyart profile image
journeyart in reply toPolski

Yes, no question in my mind any longer....the triple approach of lifestyle, supplements and recommended meds seems to be the way to go for me. I've been told that the LA enlargement will decrease with lower heart rate and Bisop....so, here's hoping for the best. I would really like to avoid the AV Node ablation.

I'll check into Sinatra. I already take much of what you mention and have D-ribose and taurine at hand....I think I may have some L-carnitine as well.

Thanks for your sharing and advice.

All best............Marcus

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