Re: My daughter's suggestion

[Guest guest]

In a message dated 7/29/04 4:12:48 PM Eastern Daylight Time,

pgal20042000@... writes:

> Thank you for your input and support. Pam in Seattle

>

>

Pam,

Welcome to the board. I'll get right to it. Check to see if Dr. Jackman still

does PVA's. I heard he doesn't.

If your EP is friends with Dr. Pappone in Milian, it should work. Your EP can

handle the follow up. I gave your daughter Dr. Pappone's email address. There

is also Dr. Natale at the Cleveland Clinic. The #1 Cardio Hospital in the US.

He and Dr. Pappone would be equals I think. Many on this board have him as an

EP.

So you have several good choices. I think another ablation with any of these

EP would be successful. These guys wrote the book.

Rich O

[Guest guest]

> My wonderful daughter (in Boston) led me (in Seattle) to this

> group. Isn't the internet amazing for helping people make

> connections? I had no idea that this message board existed, so

> I really appreciate my daughter's encouragement in taking a look

> at the site.

>

> I am totally frustrated and a bit confused about what to do next.

I

> have had two failed ablations here in Seattle with top-notch

> doctors. I've been on every medicine out there, including a

> recent but brief run on amiodorone (my second encounter in two

> years with the drug). My episodes are becoming more lengthy

> (up to three weeks) and more frequent (sometimes 4 or 5 days

> apart). They are always pretty intense--light-headed,

> passing-out, short of breath, etc. I usually convert after a day

or

> two, but I have done electro-cardioversion too many times.

>

> The past two weeks have been pure hell. I got a nasty case of

> the flu with high temperature, which led to pneumonia, for which I

> was hospitalized. My heart was out of rhythm for about a week.

> The doctors started me on an amiodorone drip, which finally did

> bring me back into sinus rhythm after several days. I have had

> terrible pauses with diltiazam (sp?) in the past, so they chose

> not to use this more usual and less dangerous drug. Anyway,

> the heart craziness only made the flu/pneumonia experience all

> the more difficult.

>

> My cardiologist has recommended that I see Dr. Warren

> Jackman at the University of Oklahoma Med School for another

> ablation. Has anyone heard of him? My doctor here, Dr. Belz,

> an elctrophysiologist at Virginia Mason Clinic in Seattle,

actually

> trained with Dr. Papalone from Milan and, of course, highly

> recommends him. The idea of going to Italy and including an

> ablation as part of my trip is not so exciting, but I am willing

to try

> anything. I am also concerned about how my insurance would

> treat a procedure done in Italy. Also, I am somewhat concerned

> about follow-up, since I had long AFIB episodes after my last two

> ablations.

>

> I also am wondering if the third ablation would have any more

> chance for success than the two previous attempts. Any

> thoughts on that?

>

> Thank you for your input and support. Pam in Seattle

Pam,

Yes, getting sick on top of afib is a *real* drag. Sorry to hear

about that. I hope you don't mind me asking:

How long had you been diagnosed with afib before you had the first

ablation?

How long between the first and second ablations?

Specifically, what type of ablations did you have?

Have you been cleared of any underlying issues, i.e. CAD, thyroid,

MVP, etc.?

Personally, I wouldn't want to jump into a third ablation without a

long talk with one of the top specialists, like Natale at CC.

[Guest guest]

Hi, Pam,

Has you tried Dofetilide? Some people in this group have had quite

good results with it.

Diltiazam(sp?) is a calcium channel blocker. I was prescribed a

calcium channel blocker by my internist when I was first diagnosed.

It helped, but the cardiologist changed me to a beta blocker (toprol)

and that helped much more. It is also a " safe " medication like a

calcium channel blocker.

I'm not a medical person, but if I had had two ablations without being

cured, I would want the best doc. And I would expect that he would

tell me if he thought a third ablation would be successful, or what

else he might try. I think in all the times I have read here about

people with no other heart conditions being evaluated for ablations,

only one has been told it wasn't possible.

From everything I've heard, no one is better at this than Dr. Natale.

Also, he is in the U.S., so that removes some of the concern about

communicating during the settling down period after an ablation.

Electo conversion apparently usually does not last.

My Mom had afib, and would go into it when she was sick, and out of it

when she got better.

If you call your insurance plan, they could probably tell you what

procedure you'd need to follow to get an authorization to see Dr. Natale.

I don't know anything about the other doctors you've mentioned, sorry.

I know this is a bummer for you. If you can afford it without waiting

for insurance, if I were you I'd try to set up a consultation

appointment with Dr. Natale, so he can look over your records and test

results, and tell you what he thinks. Meanwhile you could be starting

up the insurance proces in parallel.

Please let us know what is happening, and feel free to come in here

and vent. Most people with afib get quite stressed and anxious, no

matter how many times our docs tell us it isn't going to kill us. I

am grateful for the group because when I really wig out I know there

are people here who understand.

[Guest guest]

Thanks for your questions, .

I have been diagnosed with AF for about 2 1/2 years, although I

now know I suffered from it for at least the past 4 years. I had my

first ablation about 9 months after the original diagnosis, since I

failed every medicine we tried. The 2nd ablation was about 6

months later after a continuation of episodes. The first was a

limited transeptal ablation. The second was a more generalized

ablation around the pulmonary vein in the atrium.

Yes, I've been tested for all the usual underlying causes, but I am

considered to have lone AFIB. So there seems to be no reason

other than crazy wiring.

I appreciate this forum. It is helping me to see the value of doing

plenty of research before taking the next step.

Pam in Seattle