The current Aug/Sept issue of
The AFIB Report is dedicated solely to exploring my experiences over the last three months beginning with the surprise small stroke in early May up through the recent repair of my leak within the previous fully closed left atrial appendage that was the result of an initially successful LARIAT procedure performed last August 2013 exactly one year ago.
We won't repeat the full details shared within the lengthy story in the latest issue of the newsletter here, but a number of you have inquired about it and have had some questions about what happened and what I and we have learned from this latest adventure and I realize that not all readers of this forum are not also subscribers to
The AFIB Report.
and
As such, this thread is mostly to provide a place for any inquiries any of you might have either after having read this latest issue of the newsletter, or even if you are not familiar at all with what this is all about.
After my LAA twice confirmed as having been well sealed, with follow-up TEE testing at 6 weeks and 10 weeks post LARIAT procedure, it came as quite an unwanted surprise to experience that small stroke, or what was called at first a TIA, until more detailed MRI/MRA scans done at Scripps Green hospital, on the second Saturday in May. My symptoms mainly included a sudden onset of a deep fatigue and feeling spacy, almost disconnected in a sense and increasingly included difficulty in taking the words in my mind and getting them off my tongue with fluid and normal speech.
As noted in the description in the newsletter my wife Magdalena was just starting her drive up from Phoenix back to our place two hours drive in the beautiful red rock country of Northern Arizona, after retuning from a short trip to San Francisco. During our conversation she could clearly hear me slurring my words and I could too feeling like my thoughts were starting in one room and getting scrambled to a degree on the long trip from there to my tongue, clearly defining the adage 'tongue-tied' . Its quite a frustrating and a bit scary feeling for those of you fortunate enough to not know this experience first hand.
She called a good friend or ours in Sedona who picked me up and whisked me to the nearest ER some 20 miles away in a modest-size country town hospital. After an urgent stroke protocol of tests including a CT scan to rule out a brain bleed, which it thankfully did, and numerous manual dexterity stroke tests which I passed with flying colors, it was determined that I had suffered a TIA (transient ischemic attack) and after a few more hours of observation I was discharged with an aspirin a day from the ER doc and a recommendation to see a neurologist on Monday.
While laying on the bed in the ER, I had phoned Dr Natale, my long time EP and who had performed the LARIAT procedure along with his colleague Dr David Burkhardt in Austin some 9 months earlier. Dr Natale called back as soon as he got the message shortly after I was discharged and my wife and I were driving home from the ER and when her learned what had happened he urged me to fly to Austin the next day as he was immediately concerned that this CVA ( cerebral vascular accident) could have been due to a late re-opening leak in my previously sealed LAA.
The next 8 weeks included my trip to St Davids in Austin as well as two separate trips to Scripps Green Hospital in La Jolla Cal where Dr Natale also does ablations a couple days a month and has some a expert interventional cardiologist colleague in DR Matthew Price as well as Scripps is home to the Magna-Safe Registry protocol for doing MRIs on patients like myself who have pacemakers, which until recently was simply out of the question!
The combination brain and heart MRI/MRA at Scripps revealed a small stroke for a couple lesions in the frontal lobe, just where one would expect embolic debris from the LAA to wind up in the brain. And the next day a high resolution 3DTEE confirmed the presence of a 4mm diameter leak in the center of my LAA that the suspicious 2DTEE from Austin also showed and that Dr Natale was sure was indeed a leak, but which was questionable at first.
The high-rez TEE at Scripps left no doubt this leak was significant and after having ruled out any other plausible cause of this stroke, it was clear the most obvious source was indeed this late leak in my LAA after an initially sealed Lariat,
A month later on July 25 Dr Price and his team repaired my left with a St Jude's Amplatzer Duct Occluder II device that looks like a small highly flexible metallic 'rivet' make from nickel and titanium by using this rivet to plug the small round hole and leak in the center of my LAA. Here is what the device looks like:
Amplatzer ADO-II occluder plug used to close LAA leaks.
The procedure, which was like a much more scaled down ablation and without any burning at all, was a big success and my LAA is now fully sealed again and it is everyone's expectation that I am now just as protected as I was when my LAA remained fully closed off after the successful LARIAT procedure as well. This time hopefully for good as this leak plugging repair is typically a very stable repair and we do not expect anymore change. Knock on wood!
I am very grateful to Dr Natale, once again, for his real dedication and care in helping to search out and find the nature of my small stroke and the need repair and for him pushing to get me to Scripps and for recommending me to Matthew Price there who was an ideal interventional cardiologist highly experienced in performing both the Lariat and Watchman LAA legation/occulsion methods and who is a real pioneer in developing the procedure and process for plugging these late LARAIT based leaks in the LAA.
It was very fortunate that he too works at Scripps, as does Dr Natale and that they have such a cutting edge imagining center there with the Magna-safe MRI protocol as well.
That is the main run down of what happened.
Here are a few bullet points some of you might have questions about?
* I have been on Eliquis since the day of the stroke when Dr Natale immediately put me on that for protection while we searched for the cause and fixed the situation if possible, and will remain on Eliquis until October 25 at 3 months post Amplatzer Occluder leak repair, after which, if all goes well as expected in the Follow up TEE on October 1st, I will be off all anti-coagulation once again.
* I was on Cardiokinase at 100mg 3x/day, which is the most potent form of Nattokinase, when I had my small stroke. While concerning, its quite possible that if my stroke was due to necrotic debris from my previously closed LAA for some months, during which obvious necrosis would have taken place, and then upon the leak opening up and re-establishing blood flow between the LAA and Left atrium some of this necrotic debris could well have washed out of the remnant LAA pouch and gone right to the brain.
If so, there is no surety that any blood thinner, including warfarin or the NOACS, would have been as effective in preventing such a necrotic debris based CVA as they generally might be with a more typical thrombi-embolic origin stroke. It is also true that my stroke could have been due to thrombi-embolic debris as well, since this origin has been confirmed as a risk from late leaks in previously surgically ligated LAAs.
In any event, while we cannot quite say for sure that Cardiokinase/Nattokinase is not helpful in such strokes, and I do think it has real merit, even if not to the level required to prevent a serious and direct stroke risk such as having an in-situ stroke generator suddenly open up inside your heart. It nevertheless needs to be said that this strong dose of Cardiokinase did not prevent my stroke, whatever the nature of the emboli.
As such, I would not recommend depending on it for anything more than mild to modest risks such as using it to reduce whole blood viscosity which is has been shown to do well with an average 20% reduction in whole blood viscosity at a 100mg dose 3x a day of Cardiokinase. And I do think from my own earlier experiences and anecdotal reports that it does indeed help make the blood more slippery and less likely for a fibrin based clot to form, I just can not recommend anyone who have a serious risk for thrombi-embolic events to go it along with Nattokinase or Cardiokinase and to strongly consider adding in a full Anti-coagulant drug such as Warfarin or Eliquis/Xeralto in such cases. At least until we better understand both the effects of Nattokinase in these kind of cases and these NOAC drugs as well. There may well be a role for combined therapy with greater knowledge of who both Nattokinase and warfarin or Eliquis work together.
* The LARIAT is still a worthwhile procedure for eht right patient meeting the specific criteria who would best be served by the electrical and structural isolation of the LARIAT as well as elimination of the need for systemic blood thinners. But only now, in light of my experience and that of a couple other LARIAT related reports of small TIAs, that the patient considering the LARIAT should demand at at follow up TEE at least each 3 to 4 months during the first year post procedure to catch any leaks that might develop and plug those few that are large enough to potentially become a problem, before any such CVA can happen.
Any of you that may have any more questions please fire away, but at least now all here who might have an interested in this topic have a general overview of these events of the last three months, belated as they are in coming.
Best wishes,
Shannon
Edited 2 time(s). Last edit at 08/16/2014 08:05PM by Shannon.