A long discussion about the efficacy of various approaches to treating afib, such as diet, nutrition, drugs, etc. is in the "Nightmares and Flutter" post below.

In the same vein, I would like to pose a question: Do any of the hospitals or heart clinics carry out follow- up studies to determine the efficacy of the ablation procedures that they perform? In other words, do they systematically contact patients to find out how they are doing 1 month, 6 months, 1 year, 18 months, 2 years, 3 years, etc.?

I know that they will say that they don't the time or the staff. But, we are talking about people's lives and huge amounts of money being spent on procedures. Without this feed back, I don't see how any specialist or institution can know how well, or even whether, the procedures are actually working. What is the track record?

I am also concerned about the lack of reporting from doctors to the pharmaceutical companies and government health agencies on drug side effects experienced by patients. The communication between the drug companies, doctors and patients seems all too one way and characterized by trial and error. Where is the follow up?

Carol

You raise excellent questions-Medicine is big business, hospitals are big business. There is intense competition for patients and procedures so that the use of statistics to show ablation "cure" rates is very intense-How can there be such huge differences between top hospitals some stating "cure" ablation rates of 90% while the others qoute 60% or 70 %- I think these differences are alot more than variations in the doctors skills/methods, etc-Certainly the first thing you consider if you are ready for an ablation is theSuccess/Cure" rate. We all know that statistics can be manipulated to show whatever you want-So what is the definition of being cured by an ablation of affib , how is "success' of an ablation defined (success and cure mean 2 different things), do certain doctors screen out their ablation patients to only do ablations on those patients they consider to be better candidates than others to be "cured"? I have had 3 ablations at a top hospital-I still have very bad affib-When I was wheeled into the operating room each time I was in affib and when I was wheeled out after each procedure I was no longer in affib, but unfortunately the affib eventually returned each time-I have copies of my ablation medical hospital records-All 3 ablations list the ablations as successful, which they were ( if only for a matter of hours) as I went into the ablation in affib and came out in nsr-So did or did not the hospital and the EP carry me as a successful/cured ablation statistic, and if they did then that would really not be true- Also, there are those in the medical community that say there is a 20 per cent relapse of people who eventually go back to affib after an ablation but are affib free for awhile after their ablation-Is this 20% relapse statistic reflected in the statistics used by them or is not mentioned when they meet with prospective ablation patients? In fact, this is a key question everyone considering any medical procedure should ask re- the relapse rate-I can only speak for myself and others who have had ablations and other medical procedures , that no followup was done after the procedure and in most cases yor treatment is turned over to your regular doctor outside of the hospital-If there are cases that are still monitored by the hospital or the operating dr. , do you think they have the time to really go back and update the statistics? Please don't get me wrong- Since ablations are fairly new and constantly being refined, no-one knows if a person without affib after an ablation will remain affib free over the long term but in many cases its worth the risk if you are "living" in affib hell-I believe in ablations for those who want to have it done and in many cases people seem to really be cured of affib- that is why I went through with my ablations based on alot of my doing research-However, I believe there is much abuse, misinformation, and inflation of ablation statistics being used as a "come-on" to lure patients in"- This deeply troubles me as it does not let affibers get an accurate picture of what the real info is and it is an unethical, dishonest and unprofessional process if its happening -jerry

Jerry and Carol,

I suppose those who have successfull ablations go off and get on with an AF-free life and drift away from forums such as this: neither do they go back to their cardiologists/EPs.

You'd think (at least hope) that a hospital like the Cleveland CLinic would/will have detailed records of EVERY patient who has had an ablation there during the last however many years they've been performing them and the progress (or lack of) all patients ablated to date........ I'd be horrified if they haven't. Surely such detail is fundamentally necessary as part of refining techniques and strategies. Does anyone know? I, like MANY others here, would be MOST interested to see such a set of figures......... and I'm not even in a position where I'm thinking of having an ablation having only had 4 self-converting >24hr episodes in 4 years.......... but I'd sure like to know more as regards the real results of ablations - particularly those undertakien with 8mm tip and ICE during the last year. OK, so I'm relatively lucky as regards my episode duration and periodicity to date, but, as we all know, that can change with the passing of years. (My hope is that, if all my other strategies fail/bear little fruit as regards diminishing ectopics/palps/AF, and if I end up needing an ablation, it will not be for quite a few more years by which time success rates will I hope (and anticipate) be approaching 100% with almost zero risk.)

The last time I saw my own cardiologist (an EP who does ablations here in the UK - Newcastle Freeman Hospital) (I last saw him a year ago), he felt that ablations were too risky (at least for an individual such as myself - and, I presume, using something less than state-of-the-art equipment here in the UK?). He did, however, further to a visit by EPs from the US, have great enthusiasm for a new evolving procedure whereby a form of Maze procedure was being done in the US by way of robotic arms through a pair of entry points in the chest as opposed to open chest. I appreciate that the Maze IS a big operation when done open chest, but from what I've read on other boards in the past, it sure does kick the AF for good - I'd be surprised if anyone relapsed back into AF after a Maze. Is anyone out there more informed than I (not difficult) as regards this new less-invasive (non-open chest) form of Maze??

Mike F.

Carol - good questions. I know the CCF follows up at t3 and 6 months. I'm not sure after that. Presurg - they sent a questionnaire regarding quality of life with afib...I presume another will follow at a later date to detrmine post surg how we are doing.

I agree that there should be some data base available to consumers to evaluate the efficacy of drugs, surgical procedures, etc... with stats as to morbidity, mortality and success percentages.

WRT adverse drug effects, I doubt that doctors or their staff take the time to write up adverse effects, but there is a formal procedure in place for consumers (patients) to write to the FDA about adverse effects. All complaints documented in computer files. I've read through about 1,000 complaints on mercury from the FDA files.

I've also submitted some complaints of my own reporting adverse effects.

And I know that aspartame (Nutrasweet) is the #1 substance having the most consumer complains for adverse reactions. That said.... do we see any action by the FDA on aspartame? No.

I think the only time any action takes place is with mortality issues and this is most likely driven by litigation.

Just my thoughts. Jackie

Natale and Pappone have published several articles detailing their success rates based on hundreds of procedures with follow-ups over at least a year or more.
Do your homework.

Articles by individual doctors, who are often, not always, out to make a name for themselves, are one thing. The competition among researchers and specialists in the medical field is fierce. I know. I was married to an m.d. / researcher in the field of endocrinology. This does not always make for the kind of objectivity, that I am talking about.

Broad based, independently conducted, objective surveys and records in data base form is what is needed.

Accountability is the word.

Carol

Hi all: Great ideas from all of you. Esp the idea that EPs, most all, would like to be THE NAME in ablations. They have overwhelming ambition which sometimes overrides the basic good. It would be interesting to see, from all those on this board who have had ablations, what the follow up was. I'm sure most had a follow up at 1 month and 3 months, or something like that. I wonder if anyone was followed any further. To look at those databases on the various support groups, the success rate is no where near 90%. I would think it could be gauged by our own database?

I'll go first - They never called me!! Not once.

Maybe we should put this on a new subject line?

Pam

Good responses-The mere fact that Natale and others published articles showing their "results" of followup after a year hardly qualifies that as a scientific, independent study or as independent statistics-ie-To me a reliable study would have every ablation patient statistically followed up by an independent (not by the ablation doctors) professional. I am also troubled about what is the definition being used for cure, or are they just saying it was a successful ablation (as in my previous post this is very different than a cure rate). Are eps using the words cure and ablation success as meaning the same thing ,when in fact they are very different things?How can certain EPs say a person is cured of affib after their ablation if they continue to keep them on rate or rhythm drugs, to me a cure of affib starts from the time you are free of affib and not on any cardiac meds. Therefore which statistics are showing patients off or on meds?- Are the ablation patients being screened by certain EPS to only take the less complicated patients, ones they feel will give them a higher success rate while other eps take all who qualify? As i said previously, there are alot of ways to manipulate these figures and I don't get the sense that any reliable statistics are out there-If certain eps are giving 90 % cure rates and others 70%, does this include the relapses, does a doctors skills make up for a 30 % difference ?, why the large disparity in stats? My ep followup after 3 ablations ( one of the top hospitals in the country) was never done as i was handed over to my personal cardiologist by my ep. The hospital never contacted me after i was discharged. In fact, i actually got a telephone call from a previous ep ( I did not like him, left him 2 years ago as he was a 2 minute appointment guy and never answered my questions) who called me to say (sell, like a salesman) he was now doing ablations and was I interested. Needless to say it is very strange that there has been no large scale professionally done statistical study but I think the hospitals and the eps are too busy ccompeting with each other for the patients so that they have no incentive to do any study. Don't expect it from the drug companies as they would lose much $ if people stopped using their heart meds-I think what we have here is a marketing based use of #s to attract patients to certain drs, hospitals, etc- Again, I will say that I believe that ablations and future improvements are the way we will find a cure for affib, but it can only be truly successful if honest and ethical practices are used to safely get us there. -jerry

It is my understanding that the Cleveland Clinic tracks every ablation patient. That is why they schedule every ablation patient for a three month checkup after the ablation. I had my ablation on 14 October, and they scheduled me for a checkup on 28 January (I changed it to 7 January due to a conflict with travel plans).

Cleveland Clinic DOES define "success rates". Their definition is : No AFIB and no antiarrythymic drugs being taken three months after the ablation. They do not have a definition or numbers for "cure rates". They say the reason is that ablations have not been around enough years to say patients are cured.

I think few,if any, other medical centers or EPs track patients, have comprehensive checkups of patients, or even define these terms. That is why many EPs have been reported not to know how many ablations they have done and can't state their success rates.

This is just one more reason why the Cleveland Clinic continues to impress me.

Newman

Yes, yes, Jerry, well said..

Thanks for defining/refining the argument. A lot of the points that you made were on my mind, especially the one about the definition of a "cure" or "successful" ablation.

I think that it is ironic that medical science or science in general demands strict cause and effect empirical evidence with replicable results and yet so much of what goes on with new procedures appears to be rather unscientifically, open - ended or vague with respect to tracking the results with records and surveys.

Carol

"Cleveland Clinic DOES define "success rates". Their definition is : No AFIB and no antiarrythymic drugs being taken three months after the ablation. They do not have a definition or numbers for "cure rates". They say the reason is that ablations have not been around enough years to say patients are cured."

This makes sense, BUT is the CC actually keeping records of each ablation patient AFTER the first three months check - up? Do they send out questionnaires to patients at 6 months, one year, 1/1/2 year, etc. intervals, so that in five to ten years, for instance, they have the "big picture," a definitive idea on how effective (or possibly detrimental) the procedure is?

Or is three months all there is?

Carol

Carol,

I don't know. I'll ask in January when I visit them again.

Jackie sees them 12 November. Maybe she can ask for us.

Newman

Newman - Carol - I've already typed it to Michelle in my list of many pre-ablation questions. I'll pass along the response when I receive it.

I'm curious myself. I seem to recall that the 3 months was for the spiral CAT scan and then there was another visit 3 months after that - but beyond that I don't remember anything being stated. I've asked if they have a system in place where they keep track of ablation patients.

Jackie

It does not suprise me that new medical procedures do not in general have strict and professionally thorough statistical studies-As I stated this is big business for doctors and hospital and they find it cheaper and easier to attribute this lack of studies on 'the procedure is too new to do research on its results" Baloney, there is no $ in doing such studies so doing such studies are not "cost efficient", that is what passes for practicing medicne today. Ablations have been done for at least the last 4-5 years ( my first one was in 1999) which is plenty of time to have put together reliable statistics, but I cannot recall seeing even one study on long term follow up results.

Does the CC define patients who are still on rate control meds ( not just being off of antiarrythmics) as a "success" in their stats? Are they claiming their "success rate" as being after 3 months is 85-90% or their ablation "success" rates ( you are affib free right after the ablation) are 85-90%? how do they adjust their success rates for the patients that relapse, patients who do not follow-up because they do not return for a check- up,, patients who die, etc?. My hospital and ep did account for the relapses (estimated to be about 20% of the initially "successful ablations) in their statistics, so their 80 % rate of "success was really 60%, and they told me this from the beginning. What about all the other hospitals spouting statistics and rates, probably no 2 hospitals and eps are using the same criteria for coming up with results so there is really no way to understand as a potential ablation patient as to what these stats really mean.

Carol you raise excellent questions-I wonder what the true answers to them are? If you are an ep and are fully booked for ablations 8 months in advance are you really going to care and/or spend the time/$ "to actually keep records of each ablation patient AFTER the first three months check - up? Do they send out questionnaires to patients at 6 months, one year, 1/1/2 year, etc. intervals, so that in five to ten years, for instance, they have the "big picture," a definitive idea on how effective (or possibly detrimental) the procedure is?

Or is three months all there is?"
-I think thats all there is. With most hospitals and eps i dont even think there is anything more than an initial followup and you are then left to see your own dr-i cannot imagine questionairres. and any additional follow-up being done in this age of managed care-Just my 2 cents-
jerry

Jackie,
I am sure that I can speak for other BB posters, when I say that I appreciate your inquiring of Michelle about the record keeping at the Cleveland Heart Clinic.

The question I am raising is not about standard, individual, follow up- visit records, that probably just go back in file drawers; but rather compiling across- the- board, survey type, data bases made up by tracking patients over an indefinite time period. In my opinion the tracking should begin with the first procedure.

Why can't the U. S. Health Dept put our tax dollars to good use by setting up and compiling a standardized survey (with clear definitions and criteria) from surveys sent in by various hospitals?

Carol

Carol,

Sounds a bit like ideas floating in Congress about doing detailed cost/benefit analyses on pharmaceuticals to save money on Medicare and Medicaid. I don't recall the drug companies being to thrilled with that! Better to confuse everyone by spending billions on advertising, and jacking up drug prices to pay for it.

BillB
48;A;2000