Re: decision time !

[Guest guest]

In a message dated 3/29/04 5:56:24 PM Eastern Standard Time,

john.christmas2@... writes:

> TOTAL NODE ABALATION WITH A PACEMAKER FITTED.

,

Welcome to the group. You are now part of a group with over one thousand

members who have A Fib. From all over the world. We support each other and share

our many experiences with drugs, ablations, pacemakers and Doctors and

hospitals. We are not a medical board dispensing professional advice or

diagnosis.

Your letter suggests you have not tried the full gauntlet of drug therapies

and the ablation your Doctor is suggesting is radical.

What's your medical backgroung? What drugs have you tried? Have you had and

when, had a stress test of echocardiogram? General health? Have you visited an

electrophysiologist? Do you know what triggers your A Fib? I'm sorry for all

the questions, but I'm trying to get a handle on where you are with AF.

Rich O

[Guest guest]

> I have had atrial fibrillation for more that 20 years-I also had

> atrial flutter as well, but that was cured with ablation therapy

> last year. The consultant at a London hospital has offered me a

> procedure called TOTAL NODE ABALATION WITH A PACEMAKER FITTED.

...............................................

You say you're flutter was cured with an ablation Have you tried the

PVI ablation for the afib? If not, why?

Personally for me the TOTAL NODE ABALATION would be a measure of last

resort. Like you said there's no turning back once you had it and

the EP field is expanding so fast that you might be cutting yourself

out of any future breakthroughs

they have a unit ow that will try pacing your heart out of afib and

it's if unsuccessful it will give you a shock to get you back into

NRS.

You do realize that even with a node ablation you'll still be in

afib, permanently, but you just won't feel any symptoms.

Good luck on your decision.

P <Michigan>

[Guest guest]

Hello ..

Thanks to your response earlier about Flecainide, I was on Sotolol

for approximately 10 months, and I was a sorry mess. I couldn't

climb a flight of stairs without stopping and catching my breath,

also I was having episodes on average 1 every 8 to 10 days, they

were pretty severe. The first of November last year I was prescribed

Flecainide and digoxin by an electrophysologist. I still have afib

episodes, but mostly of shorter duration and not nearly as severe.

Since I'm on 100mg flecainide X 2, my cardiologist suggests upping

the dosage to 150 X 2 when the dosage I'm on becomes ineffective.

Then his suggestion is to move on to Rythmol. He and the EP both

recommend AV Node ablation + pacemaker. In November, Ellen ran a

poll concerning AV node ablation, there were 33 responses and only

one had the AV node ablation. So far I have not talked with anyone

who has had the procedure. Everything I have been able to read on

it, suggests it as the last resort. There was an article from the

Mayo Clinic that stated something like " 85% report improvement in

quality of life " . Well, I'm sorry, I would definately like to know

about the other 15%, and as we know from reading posts on this

board, the other ablation procedures report almost as good a

percentage, on the first try AND you aren't totally dependant on a

pacemaker. Also my understanding is, coumadin, or equivalent, will

be part of your life forever. My cardiologist has been totally up

front with me about medications, also the first part of February he

recommended stopping the digoxin, felt it was another med that I

could probably do without, and I really couldn't tell any difference

when I quit taking it. I don't plan to have the AV Node ablation

unless there is no place else to go...I'm still very active, work at

least 4 days a week, travel alot, and when I'm fibbing (as I am

right now) I don't get excited, don't eat too much, drink lots of

fluids and let tomarrow take care of itself. Best to you, I am VERY

interested in your decision.

Marie 66...Pacific NW

> I have had atrial fibrillation for more that 20 years-I also had

> atrial flutter as well, but that was cured with ablation therapy

> last year. Anyhow,I am currently taking FLECAINIDE which I have

been

> on for about a year now, before that I was on SOTALOL. I have now

> reached a point in my life where the medication is no longer being

> affective. The consultant at a London hospital has offered me a

> procedure called TOTAL NODE ABALATION WITH A PACEMAKER FITTED. Has

> any member of this support group had this procedure done, as it

> sounds a very drastic measure to undertake. I am having great

> difficulty in getting my head round all that this procedure

involves

> and what the implications are, as it is a permanent feature and

once

> you have gone down that road there is no turning back.

[Guest guest]

Hello ..

Thanks to your response earlier about Flecainide, I was on Sotolol

for approximately 10 months, and I was a sorry mess. I couldn't

climb a flight of stairs without stopping and catching my breath,

also I was having episodes on average 1 every 8 to 10 days, they

were pretty severe. The first of November last year I was prescribed

Flecainide and digoxin by an electrophysologist. I still have afib

episodes, but mostly of shorter duration and not nearly as severe.

Since I'm on 100mg flecainide X 2, my cardiologist suggests upping

the dosage to 150 X 2 when the dosage I'm on becomes ineffective.

Then his suggestion is to move on to Rythmol. He and the EP both

recommend AV Node ablation + pacemaker. In November, Ellen ran a

poll concerning AV node ablation, there were 33 responses and only

one had the AV node ablation. So far I have not talked with anyone

who has had the procedure. Everything I have been able to read on

it, suggests it as the last resort. There was an article from the

Mayo Clinic that stated something like " 85% report improvement in

quality of life " . Well, I'm sorry, I would definately like to know

about the other 15%, and as we know from reading posts on this

board, the other ablation procedures report almost as good a

percentage, on the first try AND you aren't totally dependant on a

pacemaker. Also my understanding is, coumadin, or equivalent, will

be part of your life forever. My cardiologist has been totally up

front with me about medications, also the first part of February he

recommended stopping the digoxin, felt it was another med that I

could probably do without, and I really couldn't tell any difference

when I quit taking it. I don't plan to have the AV Node ablation

unless there is no place else to go...I'm still very active, work at

least 4 days a week, travel alot, and when I'm fibbing (as I am

right now) I don't get excited, don't eat too much, drink lots of

fluids and let tomarrow take care of itself. Best to you, I am VERY

interested in your decision.

Marie 66...Pacific NW

> I have had atrial fibrillation for more that 20 years-I also had

> atrial flutter as well, but that was cured with ablation therapy

> last year. Anyhow,I am currently taking FLECAINIDE which I have

been

> on for about a year now, before that I was on SOTALOL. I have now

> reached a point in my life where the medication is no longer being

> affective. The consultant at a London hospital has offered me a

> procedure called TOTAL NODE ABALATION WITH A PACEMAKER FITTED. Has

> any member of this support group had this procedure done, as it

> sounds a very drastic measure to undertake. I am having great

> difficulty in getting my head round all that this procedure

involves

> and what the implications are, as it is a permanent feature and

once

> you have gone down that road there is no turning back.