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implantable defibs - Toni

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Hi,

I know someone who has a manual defibrillitator, he has had it for six

years. Now it has stopped working and he is in A-fib all the time waiting for

an

ablation. It is probably better to try the ablation first.

Pat

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In a message dated 4/18/06 4:36:37 AM Pacific Daylight Time,

quarteracreorchids@... writes:

> I guess my overall feeling is that if they were effective and safe, they

> would be commonplace by now... but they're not....

>

Thanks for the info Stef. I learn a lot here. I wonder why they're

available in Europe but not here. That seems odd to me. And my doctor won't

even

bother with cardioverting me ... I got desperate 2 months in to this seemingly

chronic state and she said " why bother, it won't last anyway? " which rather

annoyed me. I believe my response was a rather rude " because it's not YOU

trying

to live with popcorn going off in your chest and such fatigue you can barely

move " ... oh well. Am trying to live with my lack of options ... to me, ANY

pacemaker option seems like a last resort and such a major and expensive

undertaking that I'd like to avoid it. Dr. Natale already told me I'd be on a

pacemaker within 10 years because of the damage the other doctor did during the

SVT

ablation ... so it seems to be in my future no matter what I wish. A-fib

sucks.

Toni

CA

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Toni - they apparently do have atrial defibrillators in Europe, but they are

" manual " (according to my cardio) meaning that the wearer of such has to

recognize they are in afib and push the button themselves to get the shock. It

is also my understanding, again from my health care professional, that the shock

hurts like the dickens and that people who have them would rather stay in afib

than shock themselves!

This was suggested to me at one point in my afib history (I'm not sure

seriously, since they aren't available in the US). I opted for the PVI

instead.. I don't like the idea of a piece of equipment implanted in my body..

that would be a last resort for me.

I also wonder about the effectiveness of these over the long term... for

those of us who's afib progressed rapidly, we know that while we can get shocked

rather indefinitely, it comes to a point where a cardioversion doesn't " hold "

and at some point the doctor or ER is going to say " enough " .. you're in

permanent afib now. Prior to my PVI I had several cardioversions in less than

a week.. I think my own doctor was getting to the point of " enough " and the only

reason they agreed to continue with them was that I had the PVI already

scheduled. I cannot imagine shocking myself 3 or 4 times a week, personally.

And cardioversion is not without it's own risks, although minute... what

happens if you shock yourself in the comfort of your own home and go into some

funky rhythm, or worse, have a heart attack...

I guess my overall feeling is that if they were effective and safe, they would

be commonplace by now... but they're not....

Stef

indiaink99@... wrote:

I'd feel safer with an implantable

atrial defibrillator.

--------------

Jo Anne, there is no such thing (to my knowledge) as an implantable atrial

defibrillator. Implantable defibrillators are for VENTRICULAR fibrillation,

which can kill in moments, NOT for atrial fibrillation. Yes, the atria tell the

ventricles when to beat, but the pacemaker is for the ventricals only and not

for the irregular beats caused by a-fib. Most pacemakers don't even have atrial

fibrillation suppression mode, and those that do don't work well (from reports).

You may not feel the a-fib with a pacemaker, but it's still going on and carries

the same risks. The pacemaker just makes the ventricles beat more regularly,

but the atria are still going nutso.

Toni

CA

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I have read that the Food & Drug Distraction, that also oversees medical

devices, has had a problem with the medicinal devices. Basically, it is the

drug companies that swing their weight there. The drug companies would want to

hold off the devices until they get all the money they can out of the drugs used

before the devices.

Lately, they have been setting up a separate administration to be in charge of

the medical devices.

http://www.nytimes.com/2006/04/07/business/07device.html?ex=1145505600&en=a1512a\

dd18d30574&ei=5070

Jo Anne

implantable defibs - Toni

Toni - they apparently do have atrial defibrillators in Europe, but they are

" manual " (according to my cardio) meaning that the wearer of such has to

recognize they are in afib and push the button themselves to get the shock. It

is also my understanding, again from my health care professional, that the shock

hurts like the dickens and that people who have them would rather stay in afib

than shock themselves!

This was suggested to me at one point in my afib history (I'm not sure

seriously, since they aren't available in the US). I opted for the PVI

instead.. I don't like the idea of a piece of equipment implanted in my body..

that would be a last resort for me.

I also wonder about the effectiveness of these over the long term... for

those of us who's afib progressed rapidly, we know that while we can get shocked

rather indefinitely, it comes to a point where a cardioversion doesn't " hold "

and at some point the doctor or ER is going to say " enough " .. you're in

permanent afib now. Prior to my PVI I had several cardioversions in less than

a week.. I think my own doctor was getting to the point of " enough " and the only

reason they agreed to continue with them was that I had the PVI already

scheduled. I cannot imagine shocking myself 3 or 4 times a week, personally.

And cardioversion is not without it's own risks, although minute... what

happens if you shock yourself in the comfort of your own home and go into some

funky rhythm, or worse, have a heart attack...

I guess my overall feeling is that if they were effective and safe, they

would be commonplace by now... but they're not....

Stef

indiaink99@... wrote:

I'd feel safer with an implantable

atrial defibrillator.

--------------

Jo Anne, there is no such thing (to my knowledge) as an implantable atrial

defibrillator. Implantable defibrillators are for VENTRICULAR fibrillation,

which can kill in moments, NOT for atrial fibrillation. Yes, the atria tell the

ventricles when to beat, but the pacemaker is for the ventricals only and not

for the irregular beats caused by a-fib. Most pacemakers don't even have atrial

fibrillation suppression mode, and those that do don't work well (from reports).

You may not feel the a-fib with a pacemaker, but it's still going on and carries

the same risks. The pacemaker just makes the ventricles beat more regularly,

but the atria are still going nutso.

Toni

CA

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you said it!... but on the bright side, medicine is advancing so quickly, that

maybe in 10 years, they'll have those Star Trek thingies that they just wave

over you and " wa-la... all better! " .... we can only hope!

indiaink99@... wrote:

In a message dated 4/18/06 4:36:37 AM Pacific Daylight Time,

quarteracreorchids@... writes:

> I guess my overall feeling is that if they were effective and safe, they

> would be commonplace by now... but they're not....

>

Thanks for the info Stef. I learn a lot here. I wonder why they're

available in Europe but not here. That seems odd to me. And my doctor won't

even

bother with cardioverting me ... I got desperate 2 months in to this seemingly

chronic state and she said " why bother, it won't last anyway? " which rather

annoyed me. I believe my response was a rather rude " because it's not YOU

trying

to live with popcorn going off in your chest and such fatigue you can barely

move " ... oh well. Am trying to live with my lack of options ... to me, ANY

pacemaker option seems like a last resort and such a major and expensive

undertaking that I'd like to avoid it. Dr. Natale already told me I'd be on a

pacemaker within 10 years because of the damage the other doctor did during the

SVT

ablation ... so it seems to be in my future no matter what I wish. A-fib

sucks.

Toni

CA

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That is the way things should be. But too often, there are issues of money

involved, and maneuvering for the inside track. So what is approved is not

necessarily what should be, and what is not approved is not necessarily what

shouldn't be.

No one yet has been able to explain to me why we don't have implantable atrial

defibrillators in the United States. If they had a good reason, they should

have given it.

Jo Anne

implantable defibs - Toni

. . . .

I guess my overall feeling is that if they were effective and safe, they

would be commonplace by now... but they're not....

Stef

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