My journey.

Wasn't sure where to post this so I just made a new topic. I am brand new on here. I have been in the afibtown for a while.
So my journey started when they finally diagnosed me with afib in 2007 at 32 years old. For a couple years prior I would have episodes but was never caught by a doctor, and was always told it was probably a panic attack. In May of 2008 I had a PVI RF ablation in Las Vegas NV where I live, and was pretty good for about 18 months. Then I started having episodes about every 3 months that would last about four to five days. I decided to have another ablation by same doctor, and it was another PVI RF ablation. A touch up he said. That was in I think June 2012. About five months after I started having episodes about every seven to 12 days. My doctor put me on Flecinaide and when on a trip in Hawaii I went into what they think was Vtach due to Flecinaide. Got off of that drug and just did atenolol which I was only having episodes about every five to six months. I had done atenolol before for a while. I also had used Cardizem for a while. So in March 2017 I decided to have a mini maze in Houston Texas. It's been down hill ever since. Right after the mini maze I went into aflutter so they put me on Amioderone, and then finally cardio verted me four days later. Was on Amioderone for three months then got off, and a week later went into afib for a day then aflutter. Was in flutter for a month at a resting heart rate of 120. So my doctor here in Las Vegas cardioverted me, and put me on Sotalol, and metopalol. I was ok for about a week and a half and then started having these weird beats. Then I went back into aflutter, and was in flutter for almost three months before my doctor in Las Vegas said lets do another ablation for aflutter. He said he mapped it and the flutter was in the right side. After I came to I was constantly having many many PVC's or PAC's. Can't remember which. About a week later I started having the weird beats again. I would have a bunch of PVC's/PAC's and then like seven to 10 really fast beats, and it would keep doing this. I went to the ER, and on the EKG when I would have the seven to 10 really fast beats it would show it was Vtach. My doctor here in Las Vegas said it was not Vtach. He said it's Atrial Tach with branch bundle block with baronetcy. No I am back on Amioderone, and metoperlol. My doctor said he want me to stay on it for a while to see if things calm down. When I get off he says I might have to have a pacemaker. Right before I started writing this I actually went into what I think was aflutter for about 10 seconds, and then it corrected. I have had other health issues too that I hope are not causing my afib/flutter or whatever I got going on. I have a procedure, and it uncovers something else. I have another procedure, and it uncovers another issue. I have had a hernia in my groin since I was about 14 years old. It seemed ok up until this year. I don't know if it is because I have been cardioverted so many times. It's starting to bother me. I also had a large precancerous polyp removed from my small intestine in 2016 from UCLA because no one in Las Vegas would touch it. Then in May of this year I was diagnosed by MRI with a bulging disc in my thoracic spine T4/T5 area. I am doing physical therapy now. Might have to have an injection in my spine as there is not much they can do for the thoracic spine. I just hope all these other health issues are not causing my arrhythmia to be worse. I am at the end of my rope. Sorry for the long run on message. I'm wondering if I should just have a pacemaker put in even though I'm only 42 years old. What makes it worse is I have a daughter who is 13 years old, and for almost her whole life I have been dealing with this arrhythmia. I haven't been able to do everything a dad should be able to do with his daughter like hiking, skiing, and playing sports. I'm afraid to go on trip because I feel im going to end up in a hospital somewhere. There has been numerous times we have gone somewhere, and I have gone into afib. That's my journey. G-D bless to all.

Sorry for all the misspelled words, and bad grammer. I didn't proof read before posting.

You've had a heck of an awful time with this, but I wouldn't give up and go for a PM just yet. Others much more knowledgeable than me will chime in, and I suspect the forum moderator Shannon may want to have a private word with you. The short answer is probably this: If Dr. Andrea Natale at TCAI in Austin (and other places he travels to) is someone you can travel to and is in your insurance or you have the means to see, by all means go for it. I did, and I couldn't be happier with my arrhythmia free outcome. There are also a handful of other elite ablationists in the country who are on par with Dr. Natale. I wouldn't do the PM until I gave one of these EP's a shot at it. There is real hope for an afib-free life w/o resorting to a PM.

Thank you very much for the encouragement. I thought I was finally going to be free of arrhythmia after going to Houston, TX and having the mini maze surgery. When actually it seems to have caused or uncovered a lot more of an issue than I had before. The people I was talking to on another board along with the Doctor in Texas had me convinced that the mini maze was the way to go, and not ablations.

Sorry to hear about all of the difficulty. I was wondering how did you end up in Houston for the Mini-Maze? Did this same Dr. in Las Vegas refer you down there?

I was looking around on some message boards. One board a lot of the people were saying what a success the thoracic surgery was which is the mini maze. I was researching it, and the doctor that invented it was Dr. Randall Wolf so that who I went with. Plus they took my insurance. I have nothing bad to say about Dr. Wolf and his staff. They were great. It I guess just did not work for me. Although they are telling me that the mini maze probably uncovered these other issues that most likely I already had but the afib masked the other issues.

Unfortunately, flutter is a common side effect of Maze procedures, as you've discovered.

If I were in your shoes (and I've been close), I would book an appointment with Dr. Natale ASAP. You're exactly the sort of patient he excels at dealing with. He eats difficult problem cases for breakfast and sends them home fixed by lunchtime.

Incidentally, I don't know what was up with that ER, but there's no way anyone could confuse flutter and v-tach.

I actually had an ablation for flutter in August and a week later I went to the ER because I kept having a cycle of either PVC's or PAC's to actually skipped beats, and then I would have like seven to 10 beats of a real fast hard pace which felt different than when I was in constant flutter. This was happening over and over again. The ER ekg was showing when I would have the seven to 10 fast hard beats it showed up as VTach. My EP said those beats were atrial tach or SVT along with branch bundle block with barency which I'm not real sure what that means.

I would also recommend Natale, need expertise here. I have consistently heard that Flutter Ablations are over 90% successfull. Did your Dr. in Las Vegas say your 3rd Flutter Ablation didn't work?

No. He put me on the amioderone and wanted to wait for a while for my heart to calm down. It was actually my first ablation for aflutter. My first two ablations were for afib, and the mini maze was for afib.

Right, I didn't say that right. 2 PVI Catheter Ablations from Las Vegas Dr. Then the Wolf Mini-Maze, then you were thinking about a 3rd Ablation by the Vegas Doc this time for Flutter, but held off?



Edited 1 time(s). Last edit at 12/12/2017 04:32PM by The Anti-Fib.

I did have the ablation for flutter.

Never let an EP do more than two ablations. If he can't get it right after a primary ablation and a "touch up" then you're beyond his capabilities. Seek someone of much higher skill level.

Ok thanks.

If I were to see Dr. Natale does he use the same quality mapping system in San Francisco that he does in Austin? What mapping system does he use? I would need to go see him for a consultation correct?

The exception to limiting an EP to only two ablations.... would be as in my case...

Initial ablation, November 2003, Dr. Natale when he was in Cleveland
Second ablation, August 2014 - flutter ablation including LAA isolation - Dr. Natale in Austin, TX.
Third ablation, April, 2015 - touch up by Dr. Natale in Austin, TX.

Jackie

Zoey:

PM Sent

Quote
Jackie
The exception to limiting an EP to only two ablations.... would be as in my case...

Well, sure, that "rule" doesn't apply if you start out with the best there is.

Quote
zoeysky2004
If I were to see Dr. Natale does he use the same quality mapping system in San Francisco that he does in Austin? What mapping system does he use? I would need to go see him for a consultation correct?

I believe he uses the Carto mapping system in Austin, but I don't see much relevance to which mapping system he uses. He's not going to use substandard equipment no matter where he's practicing. (Is there even such a thing as low-quality mapping systems?)

Yes, you would need to see him for a consultation. I was allowed to combine the consultation and ablation in one trip (arrive on Monday, CT scan and consultation on Tuesday, procedure on Wednesday). I don't know if they'll always do that but it is at least sometimes possible.

I know nothing but one thing that i keep learning is that when nothing else works, you call Dr. Natale.

Yes, Carey's point is well taken on not letting the kind of ablation docs who do 100 or 200 or less, max, in a year and who do not focus much of their work on persistent and LSPAF ... then for sure if you have not made some real success after the second one with such an EP, dont sign up for another one without seeking out a far more experienced operator doing far more numbers and with an outstanding track record of success with complex persistent AFIB.

The most common type of ablationist that one is most likely to be referred too, by far, in most typical centers ... and in most typical cities and towns by the way... is the type you would do best to avoid all together, by deciding up front at the very beginning of choosing an 'expert ablation process', to be highly discriminating in choosing only from among the most experienced and renowned ablation experts you can possibly access, including being willing to travel for a 5 to 6 day stent, if need be.

As quite a number of long time regular's have noted and implied here already in this thread 'zoeysky2004', that Dr. Andrea Natale both fit and broke the mold as the easy choice for the discriminating AFIB patient based on our long experience on this oldest AFIB patient advocacy website and forum. He sets a standard to truly aim for as a wise afibber who realizes they only have one heart and decide to try to minimize the total amount of work that might be required to restore durable NSR.

As such, this kind of educated patient will seek out those elite EPs among whom Dr Natale is the single most experienced in the world at advanced catheter ablation procedures for persistent and LSPAF, and who belong to a select elite group that do almost nothing but complex AFIB/AFlutter/SVT and VT ablation in their daily practices. And who are able to keep their EP Labs full every day of the year they offer ablations, simply based on the large ongoing demand for their obvious talent's and experience level with the most difficult types of AFIB.

And Jackie is very right too, the two ablation limit rule of thumb that is wise to apply to more typical EPs, most of whom are very well-meaning and often very good clinical EPs who often are skilled in many other EP procedures too like Pacer, ICD, CRT installations and Cardioversion's or TEE scans etc, is not to be applied outright with the most experienced elite EPs doing these more challenging type of cases overall.

For example, a true maestro in every sense of the word like Dr Natale, is very often 'done in one' even with some very difficult cases that a majority of other EPs offering AFIB ablations typically will not even offer such afibbers an ablation, yet it is not uncommon either for a touch-up procedure to be needed to nail down a remnant few triggers that may have previously been too immature to elicit a clear response under isoproterenol drug challenge he performs during the last phase of most ablations.

Much less often one of his patients will need a 3rd procedure which is almost invariably a very small touch up by then .. assuming the patient started and followed through to reclaiming long term NSR with Dr Natale. Jackie was one of these cases, but with the big caveat that her index ablation with Dr Natale in 2003 gave her 11 years of almost total freedom from the beast prior to her LAA (left atrial appendage) and Coronary Sinus (CS) developing as very late triggers that Dr Natale successfully put to sleep in a two part ablation with number 3 just being mostly a quick touch up to her LAA.

Those two structuresuuu, the LAA and CS, carry roughly a 20% likelihood of requiring most often what may be just one touch-up, but it makes no sense to arbitrarily apply the two ablation per EP limit rule with such a top gun expert handling one's full case.

I hope that adds a bit more for your consideration along with the very good advice already given in this thread.

Best wishes,
Shannon



Edited 2 time(s). Last edit at 12/20/2017 01:41AM by Shannon.

Quote
Carey
Never let an EP do more than two ablations. If he can't get it right after a primary ablation and a "touch up" then you're beyond his capabilities. Seek someone of much higher skill level.

As I read this post, and after PM'ing Zoey, his Las Vegas Dr. never performed a full Index or Primary Ablation.
An initial RF PVI, that worked for 18 months, followed by a touch-up RF PVI 4 years later, and then finally a Flutter Ablation to try and rectify the failed Wolf Mini-Maze that produced the Flutter. Also this Vegas Dr. did not refer Zoey to the Mini-Maze, so the consequences of the the failed Mini-Maze do not make this Dr. less competent.

I do agree Natale would be the Dr. to go to for any more Ablations in the future.

Yes. Thank you. Hopefully with all the procedures to my heart I haven't really messed myself up.