long-standing persistent/permanent af in bc (canada)

My name is Michael and I have lived and worked in a small rural community in the mountains of the interior of BC for the past 17 years.

I apologize in advance for the length of this posting, I will be much more concise in the future.

Thank you to all who post on this forum. You have given me a breath of hope and encouragement. I have been reading your extensive and informative comments for weeks now, trying to sort my way through the vast information you have provided me. I am overwhelmed and hugely impressed by the breadth of experience and knowledge presented here. I finally gathered up my courage to post a message, but I admit to being fearful and uncertain.

I am a 55 year old male, otherwise in reasonably good health. Non-smoker, non-drinker, not on any pills or concoctions of any sort. I was diagnosed with af 18 months ago during a routine physical examination (infrequent in my life), purely by chance. As it turns out, I am in af 24/7/365. In hindsight I suspect I have been that way for 5+ years. I was one who has rarely had occasion to see a doctor throughout my life, therefore I have no baseline information as to when my af began. From what I understand, my af is "lone" and "silent". I feel fatigue and breathlessness as the main symptoms, although naively I thought those were just signs of the aging process until the fateful day an ECG revealed my af. I have since learned from your website of the other symptoms that result from a heart that is in continual af.

Thanks to this forum and the information available from www.afibbers.net, I set a goal of being af free and no pills within 2 years of my diagnosis. I was told by several cardiologists to change my goal, but I have persisted in striving for the best chance at a "cure" (ablation) as I understand it.

Since then I have seen many doctors, finally being referred to an EP based in Victoria, BC about 14 months ago. His name is Dr Sterns, and he has been directing my progress through the BC medical system. Under his direction, I have been cardioverted twice with no success. I am currently not on any pills at all for my condition. I have been told by Dr Sterns that I have jumped through all the hoops necessary to be a candidate for ablation through the BC public health system. He would be able to do it as soon as I am on an anti-coagulant for one month prior to the procedure.

I am not as informed or confident as many of you who post on this forum; when I tried to engage in a meaningful discussion with Dr Sterns earlier in this 18-month process (using information I had obtained from this website), I was met with a less than favourable reaction. I backed off, not wanting to incur the wrath of an EP who quite clearly holds the keys to the castle for my continued treatment within the BC medical system. I have asked questions repeatedly to try and assess Dr Sterns' success with ablating my type of af. He told me the chances for success with him at the controls are basically 50-50 (2 procedures, 3 months apart), with success meaning the cessation of the af and no pills thereafter. He and other doctors I have asked have been unable to given me concrete numbers to demonstrate his competency with my kind of af. I am not judging his talent or his results (unknown to me), it's just that I would like the best doctor I can afford to care for me. And I need the proof, if at all possible, to confirm my confidence in that selection.

Dr Sterns has given me two options: i) rate-controlling pills, or ii) ablation. I feel my quality of life is being negatively affected by my af, and am strongly inclined towards the ablation option. I am undeniably opposed to being on pills for the rest of my life; simply masking the symptoms instead of dealing with the base problem does not agree with my character. Having said that, he has advised me that if it were him he would take rate-controlling pills instead of going for an ablation. His other consistent comment steering me away from ablation has been that because he considers me to be asymptomatic, a successful resumption of NSR would not be "felt" by me and that ablation is typically done "to make people feel better".

I have had an active, healthy life curtailed noticeably in the last 5-7 years by my af. Again, only in hindsight do I see that now - what a strange realization, it is embarrassing to admit. I would love to regain my level of activity and vitality that I have lost due to my af. And I realize that my af is progressive and I will be increasingly more restricted as time marches on. I have lots of important reasons to want to be af free. I love my young wife and family, I am active in the outdoors with small-scale fruit farming and recreational activities, I work with children in the local schools, and I have a keen interest in water resource management in my community. I can see how my af has cut into my ability to do the things I love to do with the people I love, and the enjoyment I get from it.

I am acutely aware of the necessity to see the most experienced, qualified EP I can to perform the ablation(s), owing to the special difficulties that long-standing persistent/permanent af presents. The world-renowned EPs in Austin, Texas and Bordeaux, France would seem to be the best choices for my type of af, judging by the advice I have gleaned from this forum.

I am a man of modest means though, and the thought of many thousands of dollars for an ablation with one of the top EPs in the world makes me weak in the knees. I have read the suggestions in this forum that point towards the team in Bordeaux as a more cost-effective alternative to the Texas team of Dr Natale. I have not yet investigated how I would pay for an ablation with one of these out-of-country teams. I have begun that process just today. Perhaps my choice will be narrowed to what is available here in BC (Dr Sterns), which may well be a very good choice.

I have several questions:

1. Can someone please provide me with the contact information for the EPs in Bordeaux and the Texas group led by Dr Natale?

2. Do you have any advice on private health insurance providers in Canada or elsewherein the world who would supply coverage for an ablation in the US or France? Sorry, I am extremely naive in this area, having been healthy my entire life, and living exclusively within the Canadian public health care system.

3. Does anyone have experience with Dr Sterns' ablation skills, or know of his track record in successfully ablating long-standing persistent/permanent af?

Thank you for taking the time to read my posting. I am most thankful for all of your insightful information available from the various forums and conference rooms, databases and archives on this site. Any and all advice, comments, and suggestions would be gratefully accepted and hugely appreciated.


Michael, in Canyon, BC

Michael, Greetings from Edmonton. I totally understand where you are coming from. I had been a relatively asymptomatic paroxysmal afibber for about 8 years but my episodes were getting increasingly longer as the years passed. Although not getting the high heart rates was ok I still hated to be in afib with its continuing tiredness and exhaustion from simple things like climbing a flight of stairs so i decided to ablate. I had 2 ablations done in Edmonton by 2 different drs. The first failed and the second put me in aflutter. Even though a third ablation here may have worked I chose to spend the money and get it done by the best resulting in a so far successful ablation at Bordeaux done April 2012. Below is a copy of the letter they emailed to me prior to the ablation detailing .... well just about everything. The costs my be slightly different but I don't think they will change that much.

As for your request for Dr. N's info you could try here Dr. Andrea Natale which I found on the afib links of this site.

Good luck

Adrian


Letter from Bordeaux

Surgical or catheter ablation of atrial tissue are the only curative treatments for atrial fibrillation (AF). The principle aim of catheter ablation of AF is to restore the normal sinus rhythm in order to relieve symptoms associated with AF, and to minimize or suppress the associated risks of blood clot formation, cardiac failure and increased mortality.

Radiofrequency energy is delivered via intracardiac catheter to cauterize the sources (ectopic foci or stable circuits) which are triggering or maintaining the AF episodes, usually in the pulmonary veins and/or a segment of atrial tissue, by putting up linear barriers to interrupt the errant electrical waves responsible for AF.

Isolating the pulmonary veins cures the paroxysmal (intermittent) form of AF in 80% of patients (with no further medication required) and improves an additional 10% (with an antiarrhythmic drug but no need for anticoagulants). The longer the AF episodes, the more diffuse the atrial abnormality beyond the pulmonary veins. In persistent AF (lasting > 48h or where there is a history of electrical cardioversion) or permanent FA, isolation of pulmonary veins alone is less effective and should be combined with atrial tissue ablation to increase the success rate to 90%. However, tissue recovery – even minimal – during the healing process can require an additional ablation either early (first week) or after 1 – 3 months of follow-up.


Preablation management

For safety reasons (to avoid clot embolization during catheter manipulation) the patient should take oral anticoagulation (coumadin, not aspirin) at an optimal therapeutic range (INR 2-3) for at least 1-2 months before the procedure to minimize the risk of clot formation. In addition a transesophageal echocardiogram should be performed a few days before hospitalization to confirm the absence of any clot, notably in the left atrial appendage, as this would mean that the date of the procedure would have to be postponed.

Anticoagulants should be interrupted 48 hours before the day of the operation, anti-arrhythmic drugs will be stopped on admission.


Catheter approaches

General anesthesia is rarely performed in adult patients, in order to minimize the associated risks of infused drugs.
Under slight sedation and local groin anesthesia, the usual procedure is to introduce 3 catheters through one or two femoral veins for cardiac mapping and ablation. The mapping catheters involve multiple electrodes mounted in a longitudinal or circumferential shaft. Other configurations, including investigational designs may be used for individual situations. The ablation catheter has an irrigated tip to protect against local clot formation and allow greater energy delivery if needed (where the cardiac tissue is thicker). In the absence of a patent foramen ovale (interatrial septal hole creating a pathway between the heart chambers, found in 20% of patients), a transeptal puncture is required to access the left atrium.


Individualized ablation strategy

Two or three physicians are involved during the procedure, for positioning the catheter and for collection, analysis and interpretation of the intracardiac signals obtained during the conventional or computerized cardiac mapping.

RF ablation is performed around the orifice of the pulmonary veins (PVs), one by one or two by two, using a low level of energy to avoid narrowing of the vessel or atrial perforation. Veins are successfully isolated in 100% of cases. In paroxysmal AF, PV isolation terminates AF in 60 – 70 % of cases. In other cases, additional ablation is performed at the appropriate sites until termination of AF.
Ablation in the right atrium (cavotricuspid isthmus) is also performed systematically (unless previously carried out) to prevent right atrial flutter; in this case, linear block is successful in 99% of cases.
In persistent AF (lasting > 48 hours or where there is a history of electrical conversion), PV isolation is still the first step but rarely sufficient on its own. The second step is to apply radiofrequency energy to eliminate spots of extrapulmonary vein sources and areas of rapid activity identified by mapping in the left atrium and afferent veins, and sometimes in the right atrium. In the most resistant cases (usually long-lasting AF) the last step is linear ablation analogous to surgical incision. Linear ablation is performed in the left atrium between the two superior PV (roof line) and/or from vein to mitral annulus (mitral 'isthmus') with successful linear block in 90% of cases. AF that has been chronic for between 1 month and 5 years can be terminated in 85% of cases using the above protocol.
Success is dependent on the feasibility of achieving continuous and coalescent cauterizing points to create a complete barrier. Any gap in the line, of even just one millimeter, can allow electrical impulses to cross and thus cancel out the ablation result. A persistent gap is due either to an atrial wall that is too thick or the (unpredictable) recovery of atrial tissue during the 1- to 4-week healing process following ablation.
Pain or discomfort associated with cauterization are controlled by Midazolam and Morphine.


Duration of operation and hospital stay

The procedure can last between one to four hours, depending on individual conditions:

- the number of ectopic sources in the atrial tissue (outside the pulmonary veins) which requires more mapping time;
- linear ablation of atrial tissue substrate, determined by cardiac thickness along its length, varies from one patient to another and cannot be precisely evaluated by pre-ablation imaging.



The end-point of the procedure is achieving local block in all targeted structures (veins and isthmuses). In addition, inability to induce sustained AF despite multiple pacing maneuvers is obtained in 90 % of cases of paroxysmal AF.

In 25% of subjects a second procedure may be needed within 3-5 days for complementary ablation. This may due either to partial recovery of ablated tissue or to secondary revealed sources. In difficult cases of multiple or unmappable ectopic foci, a second linear ablation may be required in the left atrium. In chronic AF, which is associated with widespread atrial abnormalities, reablation is needed in 45% of cases to eliminate atrial tachycardia in remnants of abnormal tissue.

Patients are hospitalized 4 to 6 days depending on the number of procedures required. Typically, they return to the normal care unit after ablation and are ambulatory 12 to 24 hours later. They are monitored by telemetry during the next 3 days, when any recurrence of arrhythmia is most likely to occur. The likelihood of recurrence decreases over the next month.
The patients are usually admitted on Monday and can leave the hospital for the week-end, if there is no complication. They may stay in the region for the week-end and return the following Monday for outpatient evaluation, which could result in rehospitalization if necessary.

The occurrence of complications may increase the length of hospitalization and therefore the cost. In our experience, this is observed in 2.5% of patients.

In the absence of a recurrence of arrhythmia, patients can return home and resume normal activities thereafter. Anticoagulants are recommended for at least 1-3 months after ablation and can then be interrupted in the absence of AF and other risk factors. Antiarrhythmic mediations are recommended for 1 – 3 months after ablation in persistent forms of AF to enable the atrium to recover (process called “remodeling”).


Patient population

Catheter ablation of AF has been performed in Bordeaux since 1994. As of October 2006, over 7500 patients had been treated, with at least ten cases of atrial flutter or fibrillation being treated every week. The clinical characteristics of patients cover a wide spectrum of age (15-82, average age 52) with 78% male and 22% female, and 80% of paroxysmal versus 20 % of persistent/chronic AF. All patients were resistant or intolerant to an average of 3 antiarrhythmic drugs and experienced at least weekly episodes of AF at their referral.

Some patients had documented sinus pauses following AF paroxysms and were cured by AF ablation, thus avoiding the need for pacemaker implantation.
Twelve per cent reported a previous embolic event, most in the brain circulation.
In patients with heart failure and permanent AF, the restoration of sinus rhythm is associated with a significant improvement in ventricular function in 80% of cases.





Risks associated with AF catheter ablation

Operative mortality is presently 0 % in our department, a 0,1 % risk is a reasonable estimation by analogy to other catheter procedures. The other risks associated with AF catheter ablation are: bleeding in the pericardial bag surrounding the heart and requiring drainage (~ 0.5%), embolic event (0.2%) and groin access hematoma (4%). There is no risk of ablation causing sinus node or AV node damage, which would require pacemaker implantation. World-wide there have been deaths reported by creation of a fistula with the esophagus, using high energy power (≥ 50 watts), manifesting beyond 2 days of the procedure. We have not observed this complication.
Pulmonary vein narrowing, if it did occur, would not usually cause symptoms. Out of 7500 patients treated in our institution, 5 developed symptoms due to PV narrowing (> 70 % of lumen diameter) and required angioplasty and stenting.

The above risks compare very favorably to the reported complication rates associated with AF and long-term use of antiarrhythmic drug and anticoagulants.


Cost of the procedure

Costs are fixed by the public health administration: 9,893.29 €uros for procedure charges including private hospitalisation accommodation fees. The cost for a private service (surgeons: Pr M. Haïssaguerre / Pr P. Jaïs / Dr M. Hocini) is 5000 €uros (hospital and physician charges). The total cost of AF catheter ablation therefore depends on the length of the hospital stay, which in turn depends on the difficulty of individual ablation cases.
A typical hospital stay of 5 days with one ablation session, including pulmonary vein isolation and ablation of the right and left atria, costs about 15,354.00 €uros.
This provisional fee must be paid at least one month before the admission date.
One day more or less would be 1,979.00 €uros more or less.

The current waiting time for a procedure is about 3 months.

Patients should come with personal clothes as it is possible to walk outside the hospital and patients are generally expected to wear their own clothes, including pyjamas. As the hospital only provides small towels, you may wish to bring your own towels.



Information about the hospital


Haut-Leveque Cardiology Hospital is a 300-bed hospital devoted entirely to medical and surgical cardiology. It is in Pessac, 10-15 minutes drive from Bordeaux airport and 20-30 minutes from the center of Bordeaux and the TGV rail station.

Scientific references
Refer to www.pubmed.com or specific internet sites.

Additional information can be obtained on request:
- fax 33 5 57 65 65 09
- or e-mail Pr M. Haïssaguerre, Pr P. Jaïs or Dr M. Hocini:

Michael,

I live in the Vancouver area, and will give you all the information I can. Unfortunately I don't think Canada has a real super star that we could compare with Dr. Natale or the Bordeaux team. There is a Dr. Yaariv Khakin at Southlake Regional health centre in Ontario, Canada who is thought very highly of. I think Dr. Leather and Sterns who are at Royal Jubilee hospital In Victoria B.C. are among the most experienced Drs. in our area. I also know that Dr. Leather spent time in Bordeaux with Professor Haissaguerre around the year 2000. I can't give you any information regarding success rates or number of ablations that either have performed.
I don't want to get into my story, as it is quite long and pretty much everyone else on this board has heard it before. I can send you a personal message if you like. You won't get any financial help from our medical system if you decide to go out of country. I doubt you could get any private insurance that would cover your expenses either. I can give you a ball park figure on what an ablation in Bordeaux would cost. Aprox. $26,000 or more. That would cover all of your expenses. Airfare, accommodation, dining out, and hospital costs. Unfortunately going to the U.S. would cost you a small fortune. I'm guessing three to four times more than Bordeaux. Ideally it makes sense to have an ablation in Canada as our health care system covers all costs from start to finish. Unfortunately, I'm dubious about the outcome.
Here is the name of the contact person in Bordeaux. Her name is Laurence Bayle and her email address is laurence.bayle@chu-bordeaux.fr I found her to be very helpful and quick to respond She will send you a breakdown of all costs for your hospital stay. You are guaranteed to have either Prof. Haissaguerre, Jais or Dr. Hosini do your procedure. It is quite likely you will have two of them present.
With regards to the Drs. in Ontario, I'm not sure how it works if you go out of B.C. for an abaltion. Perhaps someone else can shed a bit of light on that. The majority of afibbers on this site are from the U.S. and someone will give you contact information for Dr. Natale or perhaps recommend another top gun.

All the best,

Lou

I just read Adrian's message and it is very informative. I think he was there recently so his figures are more up to date, as I was there in 2005.

Cheers.

Michael,

The contact information for Dr. Andrea Natale in Austin, Texas is:
Texas Cardiac Arrhythmia
3000 N IH 35
Suite 700
Austin, Texas 78705

Phone 512-807-3150

You are on the right track by asking the important questions. Too bad your EP was not more up-front with you with the answers. Best wishes as you go forward.

Betty

Michael,

What is your resting heart rate now? If it is less than 100, you probably don't need rate control meds.

George

Hey Lou, thanks for putting in [email protected] for Bordeaux contact. I thought it was in my post but ..... it wasn't

Cheers

Adrian

Good evening George. My resting heart rate is right around 100, usually averages 95-100 bpm over any given period. Rate control suggestion from Dr Sterns was calcium or channel blockers, standard stuff. He would like to see my resting heart rate in the range of 60-70 bpm.

Welcome, Michael!

/L

Michael

Persistent AF is much more difficult to fix than paroxysmal so you need an expert. I had my ablation and touch-up in Bordeaux in January 2003 and have had over 10 years of sinus rhythm since then.

After 18 months of persistent AF I felt as though my life was over. The ablations gave it back to me, and now at age 75 I work out three times a week, walk for miles and do three scuba diving trips a year to remote places all over the world.

If there is any way you can get to Bordeaux it is well worth it.

Gill (pronounced Jill and female)

Hi Michael,

Don't even dare consider getting an ablation with Dr Sterns if he recommends in one breath that he would not get an ablation if he was in your shoes, and then in the next breath he says you have fully qualified for an ablation in the Canadian system now and he can schedule you within the month!! The first rule of thumb to honor at all cost is that if your EP isn't confident he can fix you, or at least make you a whole lot better, then take that very valuable clue for real and politely move on. You might still use such an EP for local follow up if you feel confident and easy with him and its much more convenient fit for your health care system to see him as a regular EP, but definitely don't chose such a person for a more challenging ablation if he is both offering to 'give it a whirl' and see if he gets lucky while at the same time hasn't the confidence to go through it himself were he in your shoes.

As you gleaned from reading this site as well, working on more difficult cases like yours is ONLY for the very most experienced operators with many thousands of AFIB ablations under their belt and with a large percentage of those successfully addressing persistent cases after a two, to three maximum, ablation process.

Ask Dr Sterns if he can give you at least three to five contacts you can converse with of his own patients, via phone or even email, who had long standing persistent AFIB that he was able to successfully end their AFIB for after one, two or more ablations. Odds are he will not come up with any phone numbers or emails for you, perhaps citing confidentiality etc. If he can readily come up with a solid handful of such patients who are willing and able to share with you their good fortune at his hands then perhaps he is one of the rare exceptions to the rule when it comes to the most challenging cases like yours.

If it simply becomes out of the question for you to go to Bordeaux or Natale then at least use this same litmus test above and actually speak to several patients of your EP who had persistent AFIB or long standing permanent AFIB and are now dramatically improved at his or her hands after at least one year post ablation(s)... If your EP can't produce at least a handful of closely similar more challenging cases like yours who are willing to share their experience with you, then that's a big red flag not to even consider going there for you index procedure.

By comparison, you can get a big list of referrals for Dr Natale and the Bordeaux experts all enthusiastically offered up right here on afibbers.com and other such websites and both Dr Natale and Haissaguerre know well of many of us they could refer you too who gratefully have offered to speak of our experience with them or their prospective patients after all that they have done for us.

I too had a very challenging and highly symptomatic persistent AFIB case that Dr Natale eliminated the AFIB portion on one comprehensive first ablation and then finished up periodic flutter coming from my left atrial appendage taha he was unable to fully address in the first procedure and had told me right after the first one that I would need one more touch up at some point to put a period to what was a long 22 year history of dealing with it all. He did just that and ended my periodic flutter over a year ago that was four years after stopping all AFIB which had been 24/7/365 and extremely symptomatic at the time.

I know it may be difficult financially, but if there is anyway on earth you can raise the funds .. go on the radio or make a plea in the local newspapers etc ... maybe a good samaritan with deep pockets, or three, will appear? The by all means do whatever you can to put yourself into the hands of one of the worlds best maestros.

I can't urge you enough, with your history of up to 5 years of permanent long standing AFIB to go ONLY to either Dr Natale in the US or Bordeaux, and if you go to France insist that you want only Prof Haissaguerre or Jais to do your actual procedure(s) or both working together on you. Dr Hocini is a competent ablationist for sure but is not yet on fully on par, or as experienced, as either Haissaguerre or Jais, particularly for these more difficult cases.

Keep in mind too the odds are high you might well need two procedures to get this done. Your odds of being done with only two are very high, and around 60% of the time with one ablation with Dr Natale as he is very skilled and focused on addressing both the coronary sinus for isolation as well as the left atrial appendage isolation which are often needed to be able to quiet such long standing cases with what likely a significant amount of fibrosis in the left atrium from more extensive remodeling over the years of non stop flippies.

The top Bordeaux team will also be able to help quell your AFIB as well, but Im not sure how much they have adopted LAA isolation yet when needed, though they are doing more work in and around the LAA in more recently. Its catching on in many centers now with the pioneering work in this area from Natale's group for this more challenging class of patient but whether or not they address LAA isolation in the first or second procedure of such long standing cases, when indicated .. can determine how many ablations you might ultimately need for a reasonable degree of success. Nevertheless, you will have excellent hands handling the catheter with either Natale or Haissguerre/Jais.

Factor in the strong likelihood of two procedures being necessary in your case, though, if Natale does your case and he isolates the LAA in the first ablation, after confirming if that is needed in your case, he might be able to get it done in one shot with approximately a 60% shot being done in one ablation if he does the full procedure in one go .. again this 60% chance for 'one and done' is for this most challenging class of patients and is far higher for easier cases and also for the tough one like yours he's a good 85% -90% after two procedures.

Do you know what your left atrium diameter is?? That is a key piece of information for helping to gauge the likely course of what your ablation process might entail.

You might be able to negotiate a package deal with two ablations ( assuming two might be needed) for your case up front from either Natale's center in Austin or San Francisco with you coming from so far away, but I don't know that for sure, and same with Bordeaux but again they no doubt have an established protocol with so many people coming from all over to see all three men in France and the US.

One possible angle is to see if its possible to include you as part of a study or clinical trial that might help defer some of the out of pocket cost if no insurance help is there. It's certainly worth pursuing and cant hurt to inquire.

Even including the travel cost to and from Canada and Bordeaux it will likely be cheaper to go that route to France but definitely get quotes for an uninsured guy from Canada from both centers. And that depends on if Natale will be able to finish you up in one shot or not which could well make that the cheapest route overall. The catch is none of them will be able to assure you of 'one and done' and could only give an estimate of their confidence in what it will take after reviewing your whole case and examining you in person. Dr Natale will almost surely tell you to expect two procedures with the last one being of the touch up variety, and he will also say if he gets it all done in one to consider it a bonus.

If anyone can knock out such challenging cases in one shot its him, and he might be able to get it done in one if he goes for the whole shot in the first procedure ... Dr Natale came very close to having me 'one and done' in spite of a very challenging first ablation and would have done do if not for an unrelated to AFIB left bundle branch block had not that triggered at the very end of my first procedure just as he was starting to isolate my LAA after finishing all other areas and which then caused my blood pressure to drop necessitating he end that first procedure with a cardioversion before that last remaining open flutter circuit was fully closed. Four years later I had him finish up the LAA isolation where he left off and have been clean as a whistle since.

You note that you are pretty much asymptomatic but that you also very much feel a progressive worsening of the impact of AFIB on your life, that could definitely be considered a major symptom when it's become increasing disruptive to your life.

Best of luck on your investigation. if you have more questions too that you would like to discuss in more detail you can PM me andI'll try to get back to you as soon as I can.

Take care, Shannon



Edited 3 time(s). Last edit at 10/03/2013 11:13AM by Shannon.

I might tend to agree that Bordeaux is tops for Canadians, where insurance is not going to cover the expenses. Having said that, Dr. Yaariv Khaykin and Dr. Atul Verma at Southlake Medical Centre in Newmarket, Ontario are rated amongst the top in the world and having been a patient of theirs for a couple of years now I can attest to their expertise. The facility is also tops with cutting edge equipment and doing hundreds of ablations annually. All are well experience, well trained and proficient at their art. The aforementioned doctors (EP's) trained at the Cleveland Clinic.

I, too, do not understand the relationship between the provincial medical insurances. In Ontario it is all absolutely without cost. I started on TIKOSYN and have been in NSR since Dec 2011 - I would like an ablation but my previous cardiologist was a quack and permitted me to wait one full year before even trying an ECV, but allowing my left atrium to grow from under 50mm to about 60mm. I am in NSR and shrinking; latest down to about 54mm and hoping to be less than 50mm by the time of my next checkup. The side effects of the TIKOSYN are tolerable but a major nuisance and affecting quality of life. Having said that, there is much to be said of being in NSR all the time... although I still experience "balloon head" in the mornings as well as fatigue and shortness of breath to a certain extent.

So, in my book, I am quite content with having an ablation with Dr. Verma/Khaykin at Southlake (Regional Cardiac Centre), failing which I would go to Bordeaux if I could afford same. $26K is not really bad if it gives you your quality of life back.

BTW, the wait to get to see Dr. Verma/Khaykin at Southlake is triaged and can take up to a year. It took me six months and I was in permanent aFib. But once in, you are on a fast track pretty much. Unfortunately, at 60mm dia, I was a poor candidate for ablation so Dr. Verma suggested going on TIKOSYN until my LA shrunk below 50mm, at which time I was a much better candidate for ablation.

You should find out what your LA size is, what your ejection fraction is, and if there are any other anomalies that are apparent that you need to know about.

Getting in to see the EP's at Southlake will require a referral from your family physician and your cardiologist preferably along with your current records, echocardiograms, etc.

Wishing you the best while I sit here and wait for my LA to shrink so I at least have a choice of drugs versus ablation. Frankly, I would go the ablation route if I were able to.

Good luck.

Murray L

--------------------------------------------------------------------------
Tikosyn uptake Dec 2011 500ug b.i.d. NSR since!
Herein lies opinion, not professional advice, which all are well advised to seek.

Hello again, Michael. Here's a different perspective for you.

I'm in persistent AFIB, and have no intention of pursuing an ablation at this time. Luckily, I'm one of the lucky ones that is asymptomatic... and don't feel comfortable with current AFIB ablation success figures and safety. OTOH, the future will surely bring greater advances and improvements in AFIB treatment.

I work full-time, exercise six days a week (four days walking 40 minutes/day at a quick pace, and lift weights two days), and do everything else I've always done... play and sing in a musical group a couple of times a month, participate in activities with my grandsons, work around the house, etc. Only when I go really heavy with the weights or jump too fast between exercises, do I get winded...then I slow down some.

Additionally, my EP keeps regular tabs on my physical condition via various diagnostic tests... ekg, echo, stress testing, x-ray, labs, and office visits... checking for murmurs, etc. And, so far, all is well.

But I'm not averse to E/P procedures generally. I had an AFLUTTER ablation three years ago, but that procedure is much simpler, safer, and has a significantly higher success ratio... and it was successful.

If, and when, my situation changes, for sure I'll re-evaluate my course of treatment.

IMO, AFIB and all healthcare requires a personalized approach. We're all unique... yay!

All the best to you... and to our brothers / sisters on this great Board.

/L
Male -- 65 yo -- Persistent AFIB
Atenolol 50 mg daily plus supplements
CHADS2 Score = 0

P.S. My AFIB was discovered during a routine eval at age 55.

Michael,

LarryG brings up a good point in that everyone will be motivated by the degree of life impact their AFIB is causing. Obviously the symptomatic or not very symptomatic issue is what inspires most people to either seek out ablation help or not make it a priority at this time.

That's as it should be in most cases, although there is the valid caveat too that the longer AFIB persists , symptomatic or not, the more structural remodeling is likely to continue slowly yet eventually bringing more limits to your cardiac function and in many cases making a future ablation that much more difficult to achieve success with ... All the more reason for going only for the most experienced operator whenever you sense its time for an ablation to slow the spiral downward, particularly if you fall into this long time persistent category.

You indicated your life was being progressively more negatively impacted by your ongoing AFIB and that is why you are now seeking a better solution than only rate control for yourself. That's understandable as well and certainly would count as symptomatic even if your AFIB itself feels more or less silent.

Only you can decide what is best for you obviously, but what I have noticed is that most people get an innate sense when its time to take the ablation step if they are listening at all to their bodies and are not simple paralyzed by too much fear and procrastination and yet, as in LarryGs case, for many people their AFIB itself hasn't yet forced the issue by impacting their quality of life enough to bring them to consider an ablation at this time for themselves.

It's just the natural variability in how this disease can manifest in everyone and when one is paying attention they will mostly know when its past time to take the next step or not.

Shannon



Edited 1 time(s). Last edit at 10/03/2013 01:07PM by Shannon.

Hi Michael and welcome. I was probably the most recent to visit Bordeaux on this forum. You have good information here and I will not try to repeat it. I think there was a recent price increase in June while I was awaiting my second ablation. I was lucky enough to be released from the hospital early so saved some on the quoted costs. If you decide to go perhaps I could help you with a few of the details.

You sound well informed and intelligent so I will probably be preaching to the choir, however it deserves mention that afib is only a symptom of an underlying health issue and that an ablation does not cure you. This is a very important point to keep in mind to help increase your odds of success.

Something has gone awry in your system. I will make a wild guess, based on what I discovered to be my dysfunction. You could be tall, lean and hard working. You could have worked to the point that you perspire a lot and depleted your electrolyte levels. You may have some stress from running your own business which helped cause your gut flora to become unbalanced. You may eat a lot of fruit with a high sugar content which also feeds the wrong kind of bacteria in your gut. You may also have other food sensitivities such as gluten intolerance which also damages your gut wall. The villi in your 23 feet of small intestine should have a total surface area equal to a basketball court, but in my case the doctor deduced that my villi were seriously damaged, atrophied in fact and laying down like an old shag carpet. The result is that I had leaky gut, an autoimmune reaction to unprocessed particles goings through the gut wall and a sharply reduced ability to absorb nutrients. It is the lack of nutrient absorption that can be the arch enemy to a healthy heart rhythm.

I could be a million miles off that this is your case as there are many different scenarios that can lead to arythmias. The point is that you should.be well on your way to sleuthing out the underlying problems before jumping in and having an ablation. There are a variety of tests you can have to help you with the process, once you find an integrative or functional medical doctor to work with you. An Exatest is a good place to start, and there will be more suggestions as you work through the process.

You have not discussed any other health issues or symptoms you may be experiencing, but you could find that they are all tied together. The wealth of caring on this forum goes far beyond helping you find an ablationist, so fire away and let these amazing people guide you towards health.

I also set a goal for myself, but it was not quite as defined as your goal. I simply said I have had enough and want my life back, and I am prepared to do anything it takes. So far so good as I am now three this post ablation and in steady rhythm.
Best of Luck to you, Ron

....that was "three months post ablation". grrrrrr to spell check!

Thanks for your very thoughtful message tonight Ron.

I am very intrigued and interested in what you have said, and I must admit that much of this information, while not entirely new to me, has gotten lost in the anxiety to find an instant end to to my af. Perhaps I have seriously put the cart before the horse, and I should back up before going ahead with an ablation. Like you, I am more than willing to do whatever it takes to end this condition (I hope I am as dedicated as you are, I certainly am as fed up with the symptoms!), including the discovery of my underlying health problem prior to ablation.

And yes, I do have other health issues that I am starting to see may be linked. This kind of holistic approach makes a lot of intuitive sense to me, I am all ears!

I would welcome more information as to how to begin this side of my treatment. How to find what has gone awry in my system? For example, how did you find an "integrative or functional medical doctor" to work with you? I have only accessed the traditional, mainstream medical doctors in my community . . . I am not at all adverse to searching for other doctors who can help me, you don't happen to live in Canada do you? I would appreciate some leads that worked for you, and I can do the searching based on your input. Are we talking about naturopaths, homeopaths, or other such practitioners?

Your "wild guess" is eerily correct. You have described who I was until the onset of my af. I was tall, lean, hard working, athletic, heavy perspiration (depleted electrolyte levels), deeply stressed, self-employed, and I eat lots of fruit. I don't know about the other food sensitivities that could damage my gut wall, causing an inability to absorb nutrients, but I suspect you may be on to something there too.

What is an Exatest, and how do I get one done? What is involved in working through this process, and what are some of the other suggestions you have encountered to help you?

At the same time I am doing this very important work, I would welcome the details of your experience with the abalationists you trusted to do your procedure in Bordeaux. Any information you have would be greatly appreciated Ron.

Thank you very kindly again, I look forward to corresponding more with you through this forum or perhaps in the PM realm if you would prefer?

Hi Michael - I am away travelling now, so not as quick to the computer as I could be. I am from Canmore, Alberta.

The type of doctor that I found is a medical doctor who has seen the folly of the pharmaceutical approach to healthcare and has set up a clinic that takes a more wholistic approach to healing. This doctor, as will be the case with most, does not deal with arrhythmia's as a specialty, but she was open to helping me get some of the tests I wanted.

The cardiologists and EP you have seen are important contacts to have, but because of the highly demanding specialty they usually are not educated in nutrition and don't have the time to follow a wholistic path. I was fortunate to find sort of a cross over MD, who could provide access to the tests or specialists available through Medicare, and also provide access to some of the alternative tests. Plus she firmly believes supplements can be of great benefit, and that pharmaceuticals can be of great detriment.

When you delve into the area of alternative health care providers, there is a range of services, some of which are a bit too esoteric for your needs at first. For example I was recommended to homeopathy, acupuncture, massage, chiropractic, brain mapping, yoga, qi gong, meditation, etc, all of which may have some value, especially if you consider the brain can be a powerful connection to your health, but all of these are far down the list of important things to delve into initially to see where your system is deficient.

I have not used a naturopath, but believe this specialty could be good if you cannot find an integrative MD. My personal opinion about homeopathy is that it is quackery to the extreme, and a big waste of time and money.

The best source of information is right here. It takes months of dedicated reading to get your head around it all. When I came to this forum I was exhausted from loosing sleep to night time afib events, and I was suffering from gluten intolerance and other food intolerances, which impact your neurological abilities - commonly called brain fog. So not only was I fighting for my health and my life, I was struggling with absorbing all of the information.

Just to be perfectly clear, I am not by any stretch of the imagination an expert on afib. I am one individual who has had certain experiences and some success, but when it comes to giving advice I probably know only enough to be dangerous.

You are best to open a new thread with each question you have. Even this thread is getting stale and it would be good for you to ask a new question in a new thread and to generate a discussion.

With that caveat in mind here are the steps that I found gave me the biggest bang for the buck:
1. Read CR 72 and start to replete your electrolytes immediately. Potassium is a very key element for a calm heart, but you cannot build your potassium levels up without first building a base of magnesium.
2. If you are concerned about you digestion, indigestion, any allergies or any stomach issues, get a food sensitivity test. This is not the same as the allergy test provided under Medicare. There are two labs that I know of in the US that provide this. ALCAT costs about $1100. Cyrex labs I have heard is under $500, but I have no experience with them. The results of this test will give you the knowledge to cut out food items that are damaging your gut and hampering your nutrient absorption. Your gut can be the root cause of your misery so this one test can set you on a path of relief.
3. Buy a Cardy Meter for testing Potassium (K). Your doctor can order a K serum test, but the problem is your K levels change throughout the day and you can't understand where it is at unless it can be closely monitored. These are available on Amazon at a cost of $300 or $400. They were developed for the agricultural industry, so maybe it can double in your business!
4. Make sure to ask for a Potassium serum test each time your doctor requests any kind of lab work. I like to take my Cardy Meter along and do my own test immediately after the blood draw to make sure the Cardy is accurate.
5. The oft mentioned Exatest is a "nice to have" but will likely tell you what you already know - that your electrolyte levels are screwed.
6. My doctor likes the NutrEval test which also shows what you are absorbing. It was this test that allowed her to definitively deduce that my gut was in bad shape and the root cause of my illness.
7. Stop drinking coffee and booze - cold turkey is mandatory.
8. Make a quiet, firm resolve to yourself that you will have your health back.

I hope this helps you on the path to healing.
Ron

Hi Michael,

RonBs excellent advice that you will find much support from many of us long timers here for is a fundamental piece of the puzzle and is something you should dive into head first while simultaneously continuing to sort out your best options within what is possible financially and practically for you with regard to an ablation.

The gluten insensitivity issue including up to full blown celiac is huge and vastly under appreciated as an underlying contributor to our arrhythmia woes, precisely as Ron so clearly explained, because of its long range insidious consequence in the form of broad-based nutrient malabsorption over time. The side effects of which manifest as so many widely varied conditions and diseases that the original origin in life long excess gluten consumption gets lost in the forest in most cases until after many decades and often is never discovered while the person continues to suffer while attempting to deal with all the individual symptom manifestations.

In addition to the Cyrex labs test and Nutrieval test also include the Enterolabs stool and genetic swab test for gluten reactivity. Those along with the Exatest will likely shine a big light on ways you can greatly help in your dedicated effort to quiet your heart again.

However, I want to emphasize too that, particularly in a case like yours with long standing persistent AFIB, it's extremely unlikely that you are going to be able to switch back to pure NSR at this point, only by eliminating gluten and improving diet, nutrient intake and assuring good absorption of those vital nutrients. Nor is only getting your anabolic-catabolic hormone production better in balance likely to stop such long standing persistent AFIB either without the help of a very expert ablation by a top tier EP with vast experience in achieving very good results with your type of cases.

The point I want to most emphasize is that this is not an 'either/or' question! While many of us here strongly recommend more simple paroxysmal cases to first do everything they can to discover, understand and address their underlying drivers for AFIB and everyone should absolutely adopt the Strategy protocol you will find in AFIB Resources tab at the top of this page, as well as rule in or out gluten issues and hormonal imbalances such as even mild to moderate adrenal/thyroid dysfunction, since those steps really can and many time will allow paroxysmal Afibbers to regain freedom from AFIB attacks for a very long time, that is not often true for people in your situation with long time persistent AFIB.

The truth is that, while there are rare exceptions, persistent AFIB will almost invariably require at least one expert ablation, usually two, and you are very wise to also adopt all the above mentioned changes in diet, nutritional intake and, when proven necessary, gluten avoidance as well to best help those ablations in achieving the best possible results for you and the greatest freedom you can from arrhythmia.

In your case, unlike my advise for most paroxysmal afibbers, I urge you to continue along both paths simultaneously, while doing all the testing ASAP for gluten and nutrient absorption issues and also starting right away with The Strategy ... Also read CR72 as RonB suggested ... , it's also very worthwhile to continue exploring every possibility you can that might result in your access to a top ablationist also within the coming 6 month to a year.

During that time, if you are really diligent and dedicated, you can make major headway in discovery of the biochemical triggers, or at least co-conspirators, for your AFIB, but just keep in mind in cases like yours its almost always best to Marshall ALL resources into the fight, and don't neglect setting yourself up with a truly top EP who has done a lot if successful persistent AFIB ablations.

If, in the meantime, the nutrient restoration/gluten/hormonal/stress reduction programs are able to dramaticly quieten your heart, you should know with in 6 months to a year max if you are one of the rare lucky persistent AFibbers in whom that is likely going to be enough to do the job.

As such, its likely in your best interest not to postpone finding the right EP for you and arrange all the details for a likely eventual ablation while simultaneously dealing with the natural biochemical issues as well.

Do both at the same time in your case, and don't despair ... just because you have a more challenging form of AFIB doesn't at all mean you can't regain that freedom from the beast that myself and many others who went from persistent to quiet by doing a combination all out assault on this complex and vexing condition are now enjoying. Just put one foot in front of the other while following the excellent advice on this site and good things are very likely to happen.

Cheers ! Shannon



Edited 2 time(s). Last edit at 10/09/2013 11:01AM by Shannon.