So EP said I can't do anything about it. I'm doomed ?

[IA64]

This is a 2nd thread , an update to an old one which I'm going to quote here :

" Hello everyone, I've been having heart palpitations since 10 years and now that I turned 31, I'm on a business trip since 45 days.

I've had dozens of ECG, Electrocardiography, MRI etc.. which ruled out any abnormal health structure. That was in 2008 . One doctor said that RVOT was the cause of my palpitations ( I get many everyday ). Another doc confirmed that I seem to have PVC/PACs RVOT randomly.

I went for a RF ablation ( cost $31,000 covered by insurance ) but unfortunately they were not detected so doctor advised to live with them as these are probably harmless and symptomatic only.
Since 3 days, I' ve been having terrible episodes of palpitations, stomach burning sensation, left chest pain ( stabbing that would come and go ) I feel like all my nerves or muscles are weak and cramped.
I feel nervous all the time. Sometimes palpitations ease when I sit down but if I go to bed I can't sleep as they start the minute I lay down and it comes and go as I change sleeping position. I also have this burning sensation moving in my back and left chest.

I feel like I'm about to die and it happened that when I think it's coming, I get an immense feeling of fear or adrenaline rush in my body which makes me feel like my heart is stopping and beating very slowly.
The last time I had them that bad was 7 years ago when I was on a business trip as long as this one ( longer than 3 weeks ). I do usually get palpitation episodes frenquently but not the terrifying one.
I was in perfect shape when I arrived 5 weeks ago as I could go out joggin, boxing etc.. but lately the minute I stand up and walk i get almost paralized from palpitations.

One last thing I noticed is that arousal/masturbation etc.. triggers palpitations immediately.
Also pressing on my stomach / end of my chest will trigger them
Am I having serious heart issues or it's anxiety? Can palpitations over time damage the heart structure ?  what do do ? I tried beta-blockers and Calcium chanel blockers in the past but nothing helped.
I'm returning to home country on Friday as this is affecting my work and life."



Now after 3 months here's the update :


I went to the US and now I'm back to home country. I did there many tests ( ECG/EKG 4 days holter + MRI + Echocardio + Stress test

Findings :

I have

- PVCs ( Bigeminy, Trigeminy ) and in couplets and triplets ~ 1200-1500 / day
- PACs ~ 400-600 / day
- Atrial Tach / SVT ~ 1000 / day

Doctor gave me Betablocker which did not help at all.

Echo result was excellent

Stress test is OK

I quit smoking 2 months ago and still cold turkey ~ that did change nothing.

MRI results turned to be a bit concerning but doctor wasn't : They found one micro-aneurysm in the Right Ventricular Outflow Tract but everything else is normal ( no ARVC/D )

He said this might be triggering the arrhythmia but it's not life threatening.

- Flecainide did not help. Isoptin did not help . Indreal/Nebilet did not help.


Now for the worst part... I am not a cather ablation cadidate. Why ? because doctor said that my PVCs and PCAs are multifocal. They are not from the same place and don't have a dominant pattern or morphology.

So what now ? I'm doomed ? seriously I'd rather die than live with this horrible nightmare that destroyed 4 relationships in my life and made me unable to travel to pursue my career

[researcher09]

I think a minority of people can keep the condition from progression if they improve their living habits and stress.  The arryhthmia evolves over time and the factors can be genetic, environmental and personal habits.  You only have control over the latter.  You can give it a try, ie destress, watch your diet and exercise, make sure you are getting enough potassium and magnesium, etc... and see how it goes.  Give it six months and see what happens.  Don't give it a long leash as a majority of the folks with AF eventually had to get ablations.  The most successful one at reversing the condition is a former endurance (more like super endurance) athlete that detrained gradually.   He still do endurance activities but at greatly reduced frequency.  Of the people that post to the AF forum, everybody tries life style modification, supplements and medication first.  Most end up with ablations.   Each person's heart is different - how hard were you training for boxing?

[is_something_wrong]

I can't help but to think (maybe because Norway doesn't have the health care resources which US has) that ablation of 1000 PVCs or so seems a bit excessive.

The only reason for doing so (given that the PVCs are benign, which they in your case are) must be the distress they are causing. I don't know how your health insurance works, but here, you wouldn't have a chance getting a doctor to approve (or the government to pay for) such a procedure. They would barely offer you a beta blocker or some treatment for anxiety.

I'm not convinced that your doctor would approve doing an ablation for multifocal PVCs (as you are saying they occur from "everywhere") based on the argument of emotional distress only. The procedure is more risky than ablating a single spot, and more difficult.

Also, the cost seems crazy to me. To compare, at the best private hospital in Scandinavia (specialized in cardiac ablations and surgery), an EP study cost $3.500, an ablation cost $8.000 (including the EP study) and PVI ablation for atrial fibrillation cost $10.000. For other readers who need to pay for ablation themselves, it could be a very good idea to go to Denmark to have the procedure done instead of paying ten times as much in United States. I can send a link to the hospital if you are interested.

[IA64]

researcher09, THANKS !

Just a little concern, do you think that my case will get worse in future if left untreated regardless of how symptomatic it is ?

I'm asking your personal opinion.

[researcher09]

Regarding OU.  Jackman is retired but he is still there to consult.  Nakagawa would be the man if you can get him.  Having Jackman there to watch over things is always nice.  I am not saying it is not challenging.  Your EP however is saying it is impossible, far from it in expert VT hands and they deal with post attack patients that are in much worse shape than you and on the edge of heart transplants or death.

[IA64]

Thanks a lot researcher09,

I'm a bit surprised reading your post. I thought multifocal PVCs were indeed challenging to get rid of.

I will contact U. of Oklahoma as I have friends living nearby.

Next update in 6 months. Cheers and thanks a lot everyone for your opinion.

[researcher09]

Drivers for PACs and PVCs can't come from "everywhere".  In the worse cases, people with long standing persistent AFib for example, there could be as many as 5-6 triggering locations typically from boundaries between healthy and scar tissue.  "Everywhere" would imply that your whole heart is scarred and that is never the case for someone that is living and especially for someone who hasn't had a heart attack.  IMO your EP is telling you indirectly that he doesn't have the skill and experience to handle your case.  Multifocal arrhythmia is not rate at all, but it does take skill to map.  An accurate mapping is essential for a successful ablation.  Most AF ablations are multifocal and 200K of those procedures are done in the USA annually.  

Since you have the means to get the best treatment,  you may as well go for the top expert  VT centers in the world.  
Texas cardiac assoc. Austin*
U. of Oklahoma*
Johns Hopkins
Barnes-Jewish St Louis*
Emory
Intermountain heart rhythm*
U. of Alabama
Herzzentrum Leipzig*
Charite Campus Virchow, Berlin
Hospital Haut Leveque, Bordeaux-Pessac*

These all do at least 50 VT ablations per year and some exceed 100 cases per year.  Lots of choices and big variation in private pay cost.  * - means they have stereotaxis equipment which could be an important factor in getting better long term results with lower major complication risks.  If you can get the top gun at the location, then you may not need it  However, most top guns will use it anyway if they have it especially for VT/PVC ablations.