Re: TOM

[Guest guest]

We just keep on keeping on, Ive already got the 700 series pacemaker, and it

automaticly adjusts to my activity level, and can adjust my heart rate

accordingly. Seems to work quite well for me. Walt in sunny SC----- Original

Message -----

From: gerarddavidau

To: AFIBsupport

Sent: Friday, January 11, 2002 2:00 AM

Subject: Where to from here ?

In June and July of last year I posted messages ( 3915 and 4463)

concerning the second opinion I had sought about my twelve years of

Paroxysmal AF . The second cardiologist gave me a Holter test which

captured entry and reversion after forty hours . He told me that it

was an ectopic ventricular beat and not an ectopic atrial beat that

triggered both entry and reversion . This surprised him . He also

said that during the night my heart had actually stopped for four

seconds but that he was not unduly concerned because I was without

symptoms .

He further added that I was not an ideal candidate for an ablation .

However he would consider an Ablation . At this time I was on aspirin

and he suggested I replace that with warfarin . I agreed .

He wanted me to try amiodarone and on my refusal he advised sotalol .

I told him that I would think about sotalol . My enquiries in this

Group and elsewhere left me very ambivalent about sotalol and I

decided to return to my original cardiologist and discuss the

situation . There is here an interval of six months .

I have just seen my original cardiologist but regrettably he did not

have a full copy of the original Holter Trace ( many pages ) done six

months ago . He should have this in his hands in about a week when I

will revisit him .

What he had to say in the meantime has been pretty challenging .

1) He thought sotalol was not a good idea for me . So seemingly I got

that decision right .

2) In response to my question about the efficacy of an Ablation he

replied that he had a colleague currently in Bordeaux in France with

Professor Haissaguerre and that he ( the colleague ) would be back

here in fifteen months ( equipped with all the latest fancy software

for mapping AF trigger points ) ready to practice the art learned

from the world master in France .So I could presumably do nothing and

wait patiently another fifteen months .

3) I said to him that for four years he had been telling me to hold

my breath in anticipation of the release onto the Aussie market of

dofetilide . His response was that it may never be available here .

4) He quickly added that there was another drug that he was currently

trialling and that was at phase 11b of its evaluation . It was

Dronedarone (this was referred to on this Group some time ago ) .

Dronedarone is an analogue of amiodarone which he knows I will not

touch . Dronedarone for those interested in chemical structures is a

benzofuran and essentially is a deiodinated form of amiodarone . The

absence of the two iodo atoms is likely to diminish the toxicity of

the molecule . This anyway is the hope and seemingly the evidence ,

so far as I understand the situation .

5) Because my heart has shown that in AF it will stop beating for as

long as four seconds he says that I could not be accepted onto the

Dronedarone Trial without having a Pacemaker installed .

6) He says that there is a comparatively new Pacemaker now available

that has some sophisticated algorithms for giving specific assistance

to those troubled with AF . There are a few different brands

available . Medtronic and Guidant and Pacesetter are a few of them .I

have researched on the Net the Medtronic AT500 . It seems to be a

real fancy piece of technology that offers hope to those with AF .

7) The AT500 might prevent my AF without having to resort to my being

part of the dronedarone trial .

8) My understanding is that when one has a Pacemaker installed it is

there mostly for all time and that even if the device is removed the

wires hanging on your heart are left because it is too dangerous to

remove them . I may be wrong about this .

9) My dilemma is whether to do nothing now and wait for the state of

the art Ablation in twelve months or go for the Pacemaker now

in the hope that it will stop me going into AF without the need for

any drug treatment .

10) My Net research has informed me that the Medtronic (USA Company)

AT500 is marketed in Europe and Australia and Canada but as yet not

in the USA .

I would appreciate the thoughts of Groupies as you can imagine I am

vexed as to which way I should go .

I don't know what interpretation to put on the fact that the AT 500

is not as yet ( as far as I know ) approved by the FDA for marketing

in the USA . This really puzzles me and I am at a loss to know how to

find out why the US has so far held back . I expect the reason will

be quite uncomplicated .

I wonder if those with other sorts of Pacemakers installed can tell

me whether it is a big deal or whether one quickly becomes accustomed

to the presence of this device in the body. I believe it weighs about

20 grams and has a volume of either 14 or 20 cc .

I work out in the gym twice a week and I would not wish to forgo this

pleasure and particularly I have to consider that I could have this

Pacemaker installed and it may not have any positive affect on my

Paroxysmal AF .

No one can be certain that it will help me . One has to have it

installed in order to find out .Kind thoughts to everyone ,

Tom

[Guest guest]

Tom-

as we have discussed i am facing the same problem now as to pacemaker or

ablation-why is tikosyn not available in australia?I have also heard about a

st.jude pacemaker for affib-

jerry

[Guest guest]

Tikosyn is the same drug as dofelitide-i will see what i can find on the

medtronic pacemaker-

jerry

[Guest guest]

Jerry ,

If tikosyn is the same drug as dofetilide all I can say is that it

has not been made available in Australia because of the cost .

As has happened in most countries the health budget in Australia has

blown out in a most alarming way . As far as I am aware it has not

been refused entry for reasons other than cost . Many thousands of

people in Australia pay only A$3.50 or say A$7.0 for a prescription .

Far below cost . Some pay more . Pharmaceutical drugs are heavily

subsidised in Australia and the result is that it is difficult to get

another very expensive drug approved for a minority interest .

My understanding is that the Medtronic AT 500 ( other companies have

similar ) is state of the art for those challenged with PAF .

I know that If I join the international dronedarone trial the AT500

will be a pre-requisite because during sleep my heart has episodes of

stopping beating for up to 4 seconds . If dofetilide was available to

me I am unsure whether I would still be advised to have the AT500

installed .

By the way Codling is a full bottle on the state of the art of

Ablation vis a vis practitioners and sophisticated software for

mapping . He went to Professor Haissaguerre in Bordeaux , France

where I understand the whole procedure originated . That is my

understanding anyway .

Coming back to your query re Pacemakers . It could interest you and

it would interest me if you phoned your local Rep for Medtronics and

asked whether their AT 500 Pacemaker has been approved for marketing

in the USA . And if not , why not ! . Good luck and kind thoughts ,

Tom

seeyamateoze (DOT) ..

-- In AFIBsupport@y..., jerrynmn1@a... wrote:

> Tom-

> as we have discussed i am facing the same problem now as to

pacemaker or

> ablation-why is tikosyn not available in australia?I have also

heard

about a

> st.jude pacemaker for affib-

> jerry

>

>

>