Welcome to the Afibber’s Forum
Serving Afibbers worldwide since 1999
Moderated by Shannon and Carey


Afibbers Home Afibbers Forum General Health Forum
Afib Resources Afib Database Vitamin Shop


Welcome! Log In Create A New Profile

Advanced

I took the gamble and lost.

Posted by gmperf 
I took the gamble and lost.
July 01, 2015 11:18AM
Yesterday I had my 3D echo and TEE to check the LAA velocity after my September 2014 ablation.
Results were the 3D echo showed a normal healthy heart. The TEE showed low velocity, around 20.
Being 51 years old with no other health issues, I am having a hard time this morning accepting that I will be on anticoagulant the rest of my life.
I am now beginning to consider the Watchman. I don't yet know what I will do.
I knew it was a gamble going in. The afib and flutter are gone at this point. Although it will take a number of years for me to begin to believe they are truly gone in any significant way.

Yes Shannon I would like to discuss the nuances of the LAA occlusion methods, choices, and issues when you are done with the AFIB Report issue next week. Always look forward to reading your reports.
Thank you!

Don



Edited 1 time(s). Last edit at 07/01/2015 02:35PM by gmperf.
Re: I took the gamble and lost.
July 01, 2015 12:38PM
Hi Don,

While its only natural to feel a bit disappointed to learn you have to address the anti-coagulation issue long term, lets take a look here at just what you might have actually 'lost' out on .. or not ... on this gamble?

Keep in mind Don that for any one who has active triggering from the LAA, the odds of them having to deal with this very same OAC issue for life in any event are extremely high, especially without having an LAA isolation which gives one in such a circumstance the very best and only chance really ... and a very strong one indeed ... of regaining long term freedom from AFIB . And without having such an ablation or LAA ligation procedure that at least electrically isolates those offending LAA borne triggers, their odds of being stuck with the very same OAC issue indefinitely are close to 100% as it is!

Indeed, in spite of the understandable let down you will temporarily feel, since it is only natural that we all imagine for sure we will be the one of the lucky 30% or so who do not need to address this OAC issue after a successful LAA isolation process is finished. However, in reality there was never any real gamble here at all on the OAC issue! Not for the situation your heart and arrhythmia progression presented at the time of your ablation.

In fact, if anything you made the ONLY gamble that could accomplish for the main and, BY FAR, most important goal which so far your choice very much has delivered on by getting you back into NSR. The secondary goal of hopefully being able to also stop all OAC was always a great deal lessor odds, but honestly Don, clear thinking about this scenario underscores there was little option here at all if indeed you wanted to achieve the important goal of stopping or dramatically lessening AFIB/ Flutter burden.

The OAC gamble is really a bit of a red herring, as noted, as it never was much of a choice anyway and by far you best chance even of getting off OACs and not having to deal with the anti-coagulation issue, was indeed to go for the LAA isolation in the first place as you did, as that at least offered a lower, but still roughly 30% chance, of accomplishing both goals which is a damn sight better odds than if you had simply chosen to not have an LAA isolation and then be stuck on both OAC AND Rate Control drugs for life.

All the while your heart continued to remodel with the odds of increasing AFIB-related burden of silent cerebral ischema (SCI) within our brain gradually building up to potentially a not so silent manifestation of early stage dementia longer term.That unwanted outcome would be significantly more likely long term for a person in yours and my shoes, but who so wanted to avoid the OAC issue that they would rather stay with the devil they had come to live with in ongoing AFIB.

The more we learn, the more this turns out the be not much of a bargain at all ... not to mention the everyday life experience compromise for so many of us in AFIB for home that experience is anything but benign and well-behaved.

But Don, I also fully understand the initial let down when you finally hear your LAA emptying velocity was 20cm/sec (above 40cm/sec PLUS the confirmed presence of a consistent 'Doppler Mitral valve inlet A-Wave' being the two main criteria for being able to stop OAC longer term ... and even this should be checked again 6 months after you get the initial green light to stop OAC to confirm that no late changes have occurred that might alter the OAC equation again, but after that further 6 month period it is extremely unlikely for any further changes to occur in the absence of any new arrhythmia or other CVD co-morbidites developing).

My LAA emptying velocity was only 10cm/sec to 15cm/sec which is basically no movement at all ... but having evaluated the situation fully I never felt like I lost anything, just that I didn't get the super lucky hand dealt to me and thus win the lottery too ...

In any event Don, please take a sober look at just where you stand and you'll soon realize you made the only realistic and very best decision that you could have under the circumstances, and it all likely will very much turn out in your best interest for the long term of your life as is, even if one more minor touch up, to the LAA isolation, is even required as well, which at this point there is no indication that it will be.

Bottomline is that this condition sucks big time ... there is no doubt about that! It is a real long term slug fest and we are blessed, in my view, to have options at all at our stage that when we make smart decisions about, such as combining solid life style, nutritional, moderate exercise and risk factor modification methods, often with an expert ablation process, and do all of these steps earlier, rather than much later in the game, gives us nevertheless very solid odds of enjoying a rich and rewarding life while continuing to deftly navigate these often rocky and variable shores that of living with AFIB often brings to one's life.

Plus, Don there still are some very promising options for getting off the OAC drugs too long term by going for mechanical vascular isolation of your LAA, to go along with your electrical isolation that you already have done, and some of which like the Atriclip and LARIAT Plus will also reinforce that electrical isolation insuring you will never again have any arrhythmia sourced from the LAA region since it will be resorbed by the body and cease to exist and along with it both the added LAA stroke risk AND risk of LAA based AFIB/Flutter. And soon to come there will be other refinements of these methods now that the Watchman is FDA approved and rolling out in a big way nation wide. All the other LAA ligation/occlusion companies are now proceeding full steam ahead now that the wait for the spear heading Watchman approval process is complete. We can discuss the nuances of these choices and issue after Im done with the AFIB Report issue next week if you would like?

There is no rush about considering LAA occlusion/ligation though Don, and you will adapt rather quickly to the state of affairs now, especially when you take the reality of your overall situation to heart and not feel like you've some how struck out in the big game here. Quite the opposite is true from my view, even as I feel for you and the let down you now feel at having hoped to be an extra extra lucky lottery winner, and yet fell a bit short on that one account alone.

Cheers!
Shannon



Edited 1 time(s). Last edit at 07/01/2015 01:25PM by Shannon.
Re: I took the gamble and lost.
July 01, 2015 01:37PM
Thanks Shannon.
Yes I knew going in my choices were anti-coagulation and afib/flutter, or take the chance and the outcome might be no afib/flutter no anti-coagulation, or no afib/flutter and anti-coagulation. I still feel I am better off than before.
The big let down was I am a commercial pilot and it was looking like I may have had an opportunity to go back to flying. Now because of the FAA medical process, if I go through special issuance medical certification and all the tests and bureaucracy and them do anything such as an LAA procedure, I would be grounded again and have to go through medical certification all over again. In the end, it just wouldn't work. I guess that is life. I will accept it and go on.
I also fly Hang Gliders. Always knowing I have that added risk that may turn a survivable crash into a fatal crash adds a bit off uneasiness.

Dr Natale's nurse said she just had a person that was able to go off anti-coagulation, but most were not.
She also said Dr. Natale would want me to wait till December and do another 7 day monitor to make sure all was quite before perusing a LAA procedure.

The Lariat is out for me because Blueshield won't cover it. My understanding is at this point the Watchman device would need me to switch to Coumadin before and after placement. I am now on Xarelto.
I mentioned to my local EP that I thoughts the Clip might be better than the Watchman because it would get rid of the appendage rather than cover it over with tissue that may cause arrhythmia. He said yes but the Clip will leave a scare that may cause arrhythmia. I guess all this is also a gamble.

My throat is really sore this morning. I don't think I will be able to eat for another day.

Thanks for the encouraging words and logical points. I guess I will wait till December and spend the time trying to fiquire out how I should proceed.

Don
Re: I took the gamble and lost.
July 01, 2015 02:28PM
Hi Don,

Well I certainly appreciate the quandary with your career as a pilot Don! Which moves up the Watchman/Atriclip option in my view in a case like yours which ought to be able to get you back in the pilots seat, I would assume, once you can demonstrate solid absence of arrhythmia AND no chance of an AFIB or LAA related stroke. Though, I have no idea if logic and common sense rule at the FAA decision making level??

Talk to Dr Natale, though and not just your local EP, about the Atriclip leaving a scar that might cause an arrhythmia, what you EP said to my knowledge has not been the experience so far from the vast majority of the 45,000 Atriclips yet done. IN fact, the Atriclip INSTANTLY confer total and permanent LAA electrical and vascular isolation and the same issue would be a concern with the Lariat and has not at all been the history so far with several studies now showing a marked reduction in post Lariat arrhythmia even after it was installed prior to an LAA isolation as a successful Lariat and Atriclip both confer electrical and vascular isolation.

But lets just say, for theory sake, that the clean and very clear Atriclip 'scar' or line formed by the clamping down on the more proximal part of the ostium or mouth of the LAA from the outside or epicardial space might trigger a new flutter focal point, even it that were to occur it would be a piece of cake for Dr Natale to go back in with a very brief and very limited touch up just to knock out that small cleanly defined and obvious scar location and you are then done then in any event.

Nevertheless, I think your EP is simply 'What-ifing' a very unlikely scenario. There is no heat burn scaring with the Atriclip it is simply contact pressure that seals the former LAA mouth and the 'seam' from the perspective of the Left Atrium view is rather quickly and fully endothelial-ized meaning normal continuous endothelial tissue that already covers your entire LA single grows over that seam and seals it up nice and tidy that way such that when complete you can hardly detect any seam faintly perhaps but not as with a typical scar from an injury or burn.

Its not the same kind of scarring you would see even with an ablation lesion. Which, by the way, can also cause a flutter as well, but when it does is routinely addressed with relative ease by a doc with the skill of Natale. In other words, don't let that rather speculative musing of your EP over the Atriclip seal then being the cause of more arrhythmia be of concern such that it might deter you from a thorough investigation of that option for you, especially without talking that through with either Dr Natale or an experienced Cardiac Surgeon who he would refer you too, should you both agree that is your best next step, and who has done plenty of minimally invasive Atriclip procedures an get their no doubt more informed input about that possibility. I'm willing to bet that will be very far down their list of concerns, if any at all.

And yes, its good to wait until December before going with the Watchman to give that additional time to confirm the LAA isolation is very solid.. While Dr N. can do a touch up to the LAA isolation, if ever needed, after a Watchman installation, it's easier overall to not have to do so and have the Watchman installed after the LAA isolation appears very solid. Hence the advantage of a Atriclip/ Lariat Plus over the Watchman alone in such a scenario, even after a good LAA isolation, as just one more level of insurance of no more triggering from the LAA, ever.

However, I must say that with the Watchman now approved and moving quickly toward easier and quicker insurance approval, one there is very high odds you are done with the LAA ablation work, then the Watchman is an appealing alternative as well and in experienced hands is very safe as well with minimal recovery in most cases.

Regarding the post TEE sore throat, gargling with salt water helps as do the usual over the counter numbing lozenges from the pharmacy, but who did your TEE at Scripps .. you can PM me if you wish ... while it's no guarantee you wont feel any minor throat irritation after you next one at Scripps, even with Dr David Rubenson doing the honors, I would most definitely request only he do your TEE next time. He is the maestro TEE expert but its possible that even with him if your throat if very small it could feel a bit raspy and tender afterward, but I've had 12 TEEs now by a good number of different Cardios and the two I've had with Dr Rubenson have been the best experiences of all hands down with next to no throat issues at all ... and he is right there at Scripps but you just have to set it up on his time frame where you can be sure to get him as the guy doing the work. Others are very good there too, but Dr Rubenson is recognized as a true TEE expert all over the US and I would go out of my way to insure he is the guy doing any of mine ... and I have two more 3D TEEs on tap at Scripps that I still have to get done before they release me formally as well done after my Amplatzer ADO-II LAA leak plugging adventure a year ago last July at Scripps.

I've had two follow up TEEs since the ADOII plug was installed in a beautiful job by Dr. Natale referral/colleague and very skilled Interventional Cardiologist Dr Matthew Price there at Scripps La Jolla, and both follow up 3D TEEs so far, last Oct and Feb, have with Dr Rubenson and I have the next in October and a final one in July 2016 at the two year mark.

There is no reason at all anyone expects to find anything other than the perfect job they have already seen each time, and the perfect seal that the first two follow up TEE's show. But these last two they need to do are due to the fact that I was the 10th person ever to have an Amplatzer ADOII plug installed to seal up a leak in the LAA, and they need to define the full natural course of this procedure, hence the added imaging to be 110% sure.

As you get closer to December, let talk Don and maybe we can help button down a lot of your options and questions.

Shannon



Edited 1 time(s). Last edit at 07/01/2015 04:06PM by Shannon.
Re: I took the gamble and lost.
July 01, 2015 03:33PM
Hi Don - I can appreciate your thoughts as I am also awaiting the velocity clearance results testing in about 3 months after ablation "touch up" #3. My thought process has followed yours, but as Shannon notes and which I already reasoned out for myself, the continual recurrence of A-flutter rendered my existence virtually nonfunctional so the procedure and touchup to get the flutter triggers was necessary. Meanwhile, I’m loving the tranquility of a calm heart. Previously, I’d have a reprieve and then another severe setback and another ECV so since I had already lost almost 20 years of my life tinkering around trying to find the solution for my set of circumstances, I viewed the LAA isolation as a last resort option but a good one to resolve the flutter activity. My major comfort was that Dr. Natale would be doing the procedure, so I felt I had the best possible chance to come through unharmed. One thing at a time.

Now as I consider the options should I not pass the velocity clearance test, I’m torn between avoiding the installation of a man-made piece of equipment foreign to my already sensititized body or considering the surgical approach to eliminating the appendage/clot risk. I have an aversion to anything artificial being implanted in my body.

Still, on the other side of the argument, I don’t do well with warfarin or Eliquis. So it’s a dilemma. Since I’m much older than you, my reasons are obviously different than yours. At this point, I’m looking at the option least likely to cause problems that would entail even more invasive heart procedures. On the other hand, I want to be able to enjoy the outdoors and not worry about the risk bleeding from a fall or other trauma…. or even an auto accident in the years I have left.

I'm not losing any sleep over it, but continue to contemplate the pros and cons of the options available.

Jackie
Re: I took the gamble and lost.
July 02, 2015 12:40PM
Thanks Shannon and Jackie for your comments.

My understanding is after the Watchman device is implanted they want you to be on aspirin long term? If aspirin and NOACs have the same risk of bleeding, why not just stay on a NOAC. If this is the case why bother with the Watchman device? I was watching [laaocclusion.org]. This was the January 2015 meetings. I got the impression that these devices and procedures are presented to patients as a simple effective fix for a problem. When in fact effectiveness and efficacy is not that straight forward.

Another thing I wonder about is can the lack of emptying of the LAA be quantified in terms of stroke risk. For example if a person is in afib with no LAA isolation procedure, is the LAA velocity the same as being in NSR with a LAA isolation. Before the LAA isolation I had a Chads2vasc of 0, does the fact the LAA is now isolated infer a Chads2vasc score higher than 0? The fact that anti coagulation is now mandatory with a LAA isolation infers a Chads2vasc score of at least 2.
In practical terms if I need to go off ant coagulation for medical reasons, is my risk now higher with a LAA isolation and NSR than before with afib and no LAA isolation?
I guess the bigger question is am I at a greater risk of stroke now with an LAA isolation and NSR, than before when if afib?


MY TEE was done at Scripps by a Doctor with a name that sounds like "Who", perhaps Woo. Linda was there during the procedure. My TEE procedure left my throat and esophagus very sore. Linda told my wife they had a hard time doing the procedure. I guess now I have a bone spur processing on my esophagus. This is a new problem. I heard them tell another person just before me that they were not able to do the TEE because he had a burn spur pressing on his esophagus.
My throat bled during the procedure. This morning I feel worse than I did after my last ablation. I am just starting to each some solid food, with quite a bit of pain. I would hate to have any more TEEs.
Linda said while they were doing the TEE they would measure in case I want to go with a Watchman later.

Jackie, Linda said to me prior to the TEE that if I needed a second LAA "touch up" LAA velocity would almost certainly be too low to stop anti coagulation. I hope that is not the case for you. I would sure love to read you were able to stop anti coagulation and not need "another" procedure.

I am wondering this morning if perhaps avoiding any more procedures might be the prudent thing to do. So far I have done well on Xarelto. I guess I have some time to research and decide.

Don



Edited 2 time(s). Last edit at 07/02/2015 01:34PM by gmperf.
Re: I took the gamble and lost.
July 02, 2015 01:27PM
Hi Don - First, I'm very upset to learn about your trauma during the TEE and (this is just my opinion), but I'd not let anyone on that team even consider touching me for another TEE or any other procedure. I've had more TEEs than I can count ...at least six if not more, and I've never had any pain, discomfort, swelling or other trauma. (each done by different people).. I also have a TMJ problem (limited opening of jaw) so I've always cautioned everyone to be very careful and gentle. Thankfully, that worked...so what I'm saying to you is... you're the patient and you should speak up about your situation.

Do you mean a burn spur or bone spur from the spine pressing inward on the esophagus which makes inserting the tubing more difficult? I hope your pain diminishes quickly so you can begin eating wholesome food soon. My heart goes out to you and this whole ordeal. If it's a bone spur, perhaps the next thing would be consider removing the spur so it doesn't project into the esophagus which would help future TEEs and also keep you safe from food impaction.

If the bleeding continues, I'd suggest you consider changing to Eliquis delivered twice a day so that you have less of a dose all at one time and should lessen the bleeding.

A couple of comments based on my own experiences.
I have low platelets so aspirin therapy is not much of an improvement for long-term consideration versus Eliquis. I was initially started on Xalerto, but because it delivers a higher dose designed to last 24 hours, it was thought that Eliquis, dosed twice a day instead, would lessen risk for the easy bleeding or bruising that I sustain with aspirin, warfarin or these new OACs. And I do suffer with something on a regular basis... a broken capillary in my fingers from carrying a heavy object...or bruising on the arm from a blood draw or a BP cuff inflated too tight...it just goes on and on.

Last August, I had the Natale LAA isolation procedure... and then just 3 months ago, I went back for the touch up ablation #3 because of brief runs of a variety of activity. Dr. Natale thought it was best to address it immediately and I was fortunate to get in quickly on a cancellation. I was pleasantly surprised that even with the Eliquis, I didn't have huge groin hematomas as with ablation #1 and coumadin, but the sites of the various ports and blood draws still caused large hematomas at those sites .

So, long-term Eliquis is not all that appealing to me, but then as I mentioned in the previous response, I am not keen on having a man-made, piece of equipment inserted permanently in my heart area, either.

Please take care of yourself and 'take heart' that we are all sending you an abundance of good thoughts and prayers for a speedy recovery from your ordeal. Let us know how you are when you are able.

Best to you,
Jackie
Re: I took the gamble and lost.
July 02, 2015 01:57PM
Thanks Jackie, your are very kind.

Yes bone spur is what I meant. Since the bone spur is a new issue, I will look into what I can do about it.
From what I read online, treatment is usually to treat symptoms. Removal can be rather risky. And they tend to grow back.
It seems like an odd thing to have. I don't have any arthritis in general or injury to the area. I will try to get more details when I talk with Linda.

I did have a TEE before a cardioversion about a year and a half ago. That TEE was while I was awake. It was uncomfortable but not that bad.
This last one feels like my throat is raw, like a very bad cold of flu. The esophagus lower down feels bruised. I have a swollen gland near my lower left jaw and had a low grade fever yesterday.
It could have just been the space was tight and they did a lot of measuring. In any event if I have a TEE again I will go with Shannon's recommendation of Dr David Rubenson.
I am feeling better today so I am going in the right direction.

I will keep in mind your comments about Eliquis twice a day dosing. Makes sense.
When I had my second ablation with Dr. Natale last September, I had no groin bruising at all. Other than puncture marks, there was nothing. I was amazed.
Dr. Natale and his operating staff are just amazing professional. What would life be like if all health care professionals were that good!

Don
Re: I took the gamble and lost.
July 02, 2015 03:10PM
Don,

I'm sure you'll find Dr Rubenson a Natale-like quality in his realm of excellence of TEE. He will have you lay flat on your back instead of on your side in most cases, and I had no issues at all with the tube or with any post TEE soreness and I have had that in the past with other Cardios.

It's 13 TEEs Ive had so far ... not 12 ... but whose counting? :-).

Longer term especially since you are still relatively young age Don, Id lean strongly toward getting the LAA removed or occluded so that you can be done with the business all around. Then your risk of having a stroke or ongoing build up of possible silent cerebral ischemia towards increased likelihood of dementia are all arrested in their tracks .. finito.

You could have a stroke still from other non AFIB/LAA related sources but those are less prevalent in an otherwise pretty healthy person. It is true though too that since you tolerate the NOACs well there is not a big rush for you to decide and you could wait a bit as the LAA ligation/occlusion devices and procedures continue to evolve a bit more.

They have already made big strides in safety and efficacy from what these recent randomized Watchman results indicate .. again the emphasis is on choosing an operator to do the procedure who has solid experience in doing the procedure.

Overall the Atriclip and Watchman are not all that challenging procedures once they have been done a dozen or so times by an already very skilled EP or Cardiac Surgeon in the case of the Atriclip they are considered pretty much a piece of cake now. .. nothing on the lines of a full AFIB ablation. Listen too to Dr Natale, he has your best interest at heart and understands your cardiac situation better than anyone else.

And while try not to over analyze all the potential downsides the vast majority of which are extremely unlikely to occur. Its good to know the full scope of a procedure but also with the kind of care and guidance you will get from Dr Natale on who he recommends you see for that step, you can carry with you a large measure of trust that things will go very well indeed .. my Amplatzer ADOII plug by Dr Price there at Scripps who has himself done more Watchman's than anyone else in the US (as of last year at this time in any event) and has done a bunch of Lariats too as well as the most Lariat leak plugs of anyone I know of as well including mine which so far as been a literally perfect procedure according to all who have seen the follow up TEEs.

These type of procedures can indeed be done with a high degree of profeciency and with the Atriclip, after its done you are done pretty much and immediately stop all OAC drugs

I dont think any plavix or aspirin is required after the 6 months post Watchman period, but am not sure. That would mostly just be a cardio 'cover my butt' kind of catch all prescription kind of thing even if it is often suggested, and I doubt its a big deal. And there are some non aspirin natural anti-platelet options too that one could do if they wanted to cover all possible bases, however small any residual risk, but once the Watchman is well endothelial-ized and covered over there would be at most an extremely small to zero risk of any platelet aggregation forming an embolism on the now covered device.

Shannon
Sorry, only registered users may post in this forum.

Click here to login