Going On....

For some reason had a rough weekend. I have increased my Potassium with LS V8 and occassional 400mg. I have increased my Mag with Epsom bath (3x week) and two 500 mg day. Past couple of weeks have done great. I had a date sat with an old girlfriend and did have some reservations about re-starting, and old issues, etc. So maybe was stressed IDK. Its like I cant even experience feelings anymore with out affecting my heart. Makes me not want to experience anything. My episodes are always very scary to me. I dont know why. Even runs of pacs etc just tear me down to the ground. I have a great life and love life. I just dont know as I get older if I want to live this way. Its like everyday my mind wonders if this is going to happen or why did that happen, what did I eat, Did I have a drink, Its back! Its just too much at times. And I know people have much much worse disease and problems. But its just too much sometimes.

Hi TSCO, The one factor I could not control was stress. Even situations/events I enjoyed caused trouble for me. Since my second ablation i have been AF free and do not get the physical symptoms from stress i did pre ablation. Good luck addressing your stressors . I could not find a remedy. Dennis

Hi TSCO,
I totally understand exactly what you're talking about because that's what I felt. I don't know or recall if you already went through ablation or not, but
that's what I recommend. The beast is very unpredictable and there are no explanations or reasons to when it wants to show up. After ablation with a great doctor such as Dr. Natale, I believe you would have a much better life than dealing with the beast. Don't wait too long and don't let this get you down. There is hope tsco. You can get your life back. Please keep us posted. Good luck.

Duke

Hi TSCO,

Sorry to hear of your on going troubles. are you sure these are only ectopy and no AFIB or flutter/tachycardia runs? I know you don't want to have to consider another touch up. But if this is effecting you so much, please do consider discussing it with Dr Natale. He may well be able to tie up a last loose end or two once and for all, such that you share the experience of us here with little to arrhythmia problems any longer.

You have had an especially difficult journey here with all this and I feel for you and very much understand the frustrations. I love Dr Tommasoni and feel he is a super physician and a very nice man, though in a challenging case like yours, it might be time to let even more experienced hands go in for a final touch up, is such a step might be warranted?

When you had that right sided SVT or CTI Flutter ablation with Dr Natale a long time ago at CC that did seem to give you a fair period of relief. Alas, at that time the field as a whole was just beginning to discover what has recently become widely recognized, that it's far better in most cases of right atrial SVT or right atrial CTI flutter to go ahead from the begining and do a full left-sided PVAI right then as well, as almost invariably doing only a CTI Flutter or SVT alone will, at best, only buy a period of time of reprieve before progression to full left atrial AFIB/Flutter begins to manifest.

Thus, there is a strong movement now among EPs to just do a full PVAI right from the start and try to kill two birds with one stone that way. If what is going on with you has to do with other areas of the LA/ RA that were not seen after your first PVAI along with the FIRM focal spot(s) zapped last year, then having those tracked down by the mosts expert hands could perhaps put you over the hump once and for all.

In any event, a good consult in Austin, if that is feasible for you, could well shed some light on what might be going on. I know too that they have been conducting a long term in-depth study of FIRM-based ablation in the hands of very experienced ablationists there at St. David's as well, and are very familiar first hand with it all now as well. A full report on what their findings are with the system will likely come out at some point in the coming year or so, I imagine.

Also, keep in mind that Dr N does not automatically abate the LAA, only if it clearly remains, or has gradually morphed into, a major or sole driver of the problem does he do so, as we are just pissing in the wind, so to speak, if the LAA is a key triggering source and we continue to avoid it just out of hand. If the LAA is not significantly involved he wont touch it.

Even if your issue is just aggressive ectopy, depending on what kind and where it originates he may well be able to take care of that in any event too, even if AFIB/Flutter is not part of your issue any longer as it is. With your case though, I would want all the best expert insight I could muster.

Best wishes and best of luck on getting it all sorted out so you don't have to deal with these frustrations going forward.

Shannon



Edited 1 time(s). Last edit at 02/02/2015 02:05PM by Shannon.

Thanks Shannon and all

You may be right. Maybe I just need to do that. I think Ill prob give a little more time to see how I progress. Im not sure what the issue is for sure (no monitoring) and the events are spaced. I do have agressive ectopics which Tomassoni was going to target but evidently the FIRM equipment went down. I swear one visit I thought I was told there was nothing in the PVs so there was no PV ablation and the nxt visit when I asked I was told a full gambit was performed incl PVs. Im a little confused on that. I am a year without any sustained afib(episodes were increasing and were 5-6 hours). But I have had two semi-sustained episodes of something one 15 min. and converted by coughing the other 5 min converted by coughing. Both fealt like afib but who knows. In addition I get those pacs that we know are in the left atrium somewhere.

Dennis and Duke, yes this was my first left side ablation Feb 24, 2014. I had 3 right side ablations for Tachy

Shannon,
Whats your opinion on my wait period. I mean should I let this progress some? Even considering insurance do they have a "span period" between these procedures?

Where/how are all you people learning all this?! I was diagnosed (Tach.-Mediated Cardio.) in 2010, had an ablation that lasted 3 weeks, and am taking 6 meds for heart (spent ~2 years in a-fib 24/7 even on metoprolol, digoxin, and warfarin). I have been reading/researching online since 2010, and still have too many questions.

I live in a small town in northern NM, and the one cardiologist in town is considered good, but I feel I'm being over-medicated. But, how do I tell?

What the heck did you all do to educate youselves so well?

Any help appreciated.

Oh, yeah. Also meant to say that when I go into a-fib (usually from too much salt), I get incredibly stressed just from fear of what could happen because of it. I can frighten myself into heart rates above 160 pretty easily.

I finally got fed-up with things like going for a pro-time check and being sent to the ER because I was a-fibbing or being "threatened" with a paddle cardioversion from an ER doc unfamiliar with my case.

So, I began to meditate, like I did when I was younger. I can usually bring my heart back to normal sinus rhythm within 20-30 minutes when I have to.

tsco Wrote:
-------------------------------------------------------
> Shannon,
> Whats your opinion on my wait period. I mean
> should I let this progress some? Even considering
> insurance do they have a "span period" between
> these procedures?

Hi Tsco, sorry I missed this one while I was traveling last week. Its been long enough if indeed you are getting some arrhythmia and not strictly just ectopy. Even if its just ectopy but is aggressive enough to greatly interfere with your life style I would definitely set up a consult with Dr Natale, who can review all of your records and help make the best nuanced recommendation for your case.

But if there is any true AFIB runs or Flutter mixed in with the garden variety ectopy as well, then your best best it to get it taken care of, also by Andrea Natale, especially considering the nature of your case.

Should be no issue time wise with your insurance either, Its very common for people to get follow up ablations, when needed within 3 to 6 months post index ablation. The thing is, once a documented actual AFIB or Flutter has been found after the three months blanking period ( really after two months) then the dye is pretty much cast that you need that hopefully final touch up to but it all to bed for the long haul.

Remember too, your prior ablations were all right sided SVT or tachy-arrhythmias and not an AFIB Ablation. You also did have a PVAI which hopefully was done fully transmurally with no reconnections, and the FIRM part of it is simply a big unknown whether or not that really added anything of value or bought you anything in the process over the PVAI.

In any event, you can ask Dr N about their very extensive FIRM experience now at his center in Austin over the past year spread among a good number of very experienced ablationists.

I thought Dr Tomassoni indicated too that your case was a hybrid PVAI and FIRM used just for looking for addition triggers, but it will be good thing to confirm that. Do you not have a copy of your ablation report? If not, please request a copy ASAP from his office as that will be very important info for Dr Natale to see as well as for yourself to keep on file.

The point being that although I fully appreciate how frustrating this must be with having had to struggle with the right-sided tachycardias for years and with a few early ablations solely limited to that area, and only this last time to have had your first full AFIB ablation, keep in mind that it is just not uncommon to need a folllow-up touch up in the left side too after an index AFIB ablation, to really put it to bed for the long haul.

All the more reason to not roll the dice any more than is absolutely necessary on this next step, if indeed one is even warranted, and go only to the very most experienced ablationist you can to maximize your very good odds of this being the last such experience as it is.

Dr Tomassoni will fully understand and will still be a super on-going EP going forward for you.

Shannon