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Hans....and others....

Posted by Jim C. Rose 
Jim C. Rose
Hans....and others....
December 30, 2003 03:35PM
I am confused with the reported success rates for PVI claimed by various doctors and medical centers. It is my understanding that they typically classify "success" as going for 3 months with no fib and no anti-arrythimics.

I see that Cleveland Clinic is claiming 80 to 90 per cent on the first try. My EP who has an excellent reputation claims only 70 to 80 per cent. Since he does these things all the time in a major medical center with an excellent reputation, it is hard for me to believe that CC has some secret that he does not know about. I would also point out that this doctor reports that he has never had a case of significant stenosis. He has been doing these things for about 3 years now.

Is it possible that effectiveness and potential stenosis represent a terrible trade-off. Does increased effectiveness of PVI constitute an increased risk of stenosis?

How can one be sure that the numbers being quoted by various centers are indeed truthful?

Any comments from anyone in the know would be much appreciated.
Bob G
Re: Hans....and others....
December 31, 2003 12:12AM
I do not consider myself in the know about these things but can only share my own experience. I recently had a PVI less than two weeks ago. I had mine at Cleveland Clinic Florida in Weston near Miami. My Dr. simply explained to me how these percentage things work. I am, hopefully was, a very difficult case. I have had heart dysrythmias for about 30 years, some of them in the beginning, ventricular and life threatening. About half way through with medications and miracles, I lived and things started to go to AFib. Since I was such a bad case, the risk of a PV ablation curing me is lower than most. If a Dr. does not do cases like mine, it helps his % rate, and not the people who need help. I have had several Dr's refuse to do my ablation, since I was in a postion to make the % lower, telling me I was not a candidate for the ablation. I am not sure how or what the results will turn out to be. The 2 to 3 month time is for the heart to heal, and then we will know whether it helped me. I still have AFib, not nearly as much, only for short periods, no longer than a day, and only a few times a week. I consider that to be a certain healing to me. It is so much better, and that is all that my Dr could promise. So in my case it may be 70% cured, while someone else may be 90%, and if they don't do the ablation except for those that seem to be able to benefit at a great % then they are making the % to look good. My Dr says forget about the % and do what you can for the patient.

After the surgery I asked the Dr. about the stenosis, and he said that it has become less and less of a concern, and that unless you have symtoms that indicate that possiblility, they do not even check for it any more. It seems that they have learned to go further and further away from the area that causes that, and they burn lines back and forthe rather than burn that area so close, and it not only works better, but also prevents stenosis. He burned over 100 areas and took about 7.5 hours to do my procedure, since I had so many bad areas. I may still have to take Tikosyn and coumadin, but if i can live in NSR most of the time, it is worth it to me. I was so afraid of the proceedure, and it turned out to be very easy for me. I would do it agin if I needed a touch up, without thinking twice. I had tried every medication except Amiodorone, and none have been sucessful until Tikosyn, but even with that, I still had a lot of afib. I had an AV node ablation that only stopped my ventricles from responding to the fib, so at least that was a good prevention, but it did not help my afib. I also had a pacemaker change, to an over ride pacer, and because of the amout of afib i had, along with the override kicking in I went into heart failure, and lived on oxygen constanly. My local dr's had no idea what was happening, but my EP at clevland Clinic figured it all out, and I got much better when he turned off the AFib over ride on my pacemaker. I trust him, and I believe that this has helped me.
Jim C. Rose
Re: Hans....and others....
December 31, 2003 12:20AM
Wow, Bob, you have really been through it all. I pray that you will find the recent procedure has provided you with some years of comfort and happiness. You certainly deserve it. Thanks for the response.
njb
Re: Hans....and others....
December 31, 2003 12:35AM
Jim - I wondered the same thing as you - how can you be sure that the percentages doctors quote are true. I asked my referring EP. We both kind of came to the same conclusion - you basically just have to trust your doctor.

Bob G. - I am a little concerned for you when it comes to stenosis. Because I was told by Dr. Natale's staff that some people have stenosis without any symptoms. Which is why they want you to have the spiral CATSCAN after three months.
Re: Hans....and others....
December 31, 2003 01:07AM
Jim - I recently had PVI at CCF with Dr. Natale...in fact it was exactly 7 weeks ago today. During the initial consult with Dr. Natale in April, he stated the success rate was around 80%....he never verbally told me it was higher. Perhaps after six months and more ablations for the EP section of CCF, overall, they are currently claiming a higher percentage.

He explained success as meaning after 3 months - no drugs and no afib.

This was the 80% success. He then said that if the afib persists, a touch-up procedure would be required and then the success rate was 95% or higher.

The risk of stenosis was another issue entirely; although, he now claims that the use of the ICE (Intracardiac Echocardiography) guided ablation virtually eliminates the stenosis risk factor.

I gather that many EP's elsewhere are not using the ICE monitor at this time.

My own conclusion on that is the CCF is a leader in the heart "industry" and any new development that can add to their claim and keep them #1 will be used simply because they undoubtedly are offered these innovations - free - for the opportunity to test them and then tout them and then the manufacturers can ride on the coat-tails of the success at #1 rated CCF. Marketing strategy.

I don't view this as all bad, unless, of course the patient is harmed by the experimenting. That said, however, the recently issued report (July 2003) in the Cleveland Clinic Journal of Medicine - Managing Atrial Fibrillation: Focus on NonPharmacologic Strategies - indicates the use of ICE is a critical step for avoiding PV stenosis when the catheter needs to be placed deep in the PV ostium....they never know until they get in there exactly where the abberent signals l originate.

As I look at this study to type these comments, I notice a chart of published ablation results from a few years back - and Dr. Natale was listed as 60% cure rate (then) and another EP at the CCF has several results ranging from 29 to 100% with the majority in the 80's and one 90%.....so perhaps some of these latest results boost the success rate up to the number you mentioned in your post. I'm sure overall it boils down to an average coming out of CCF - and this looks as if it is just the Cleveland campus... I don't see Florida mentioned.

I don't believe that stenosis should ever be a trade off between a successful ablation, especially now with the ICE monitor allowing them to see exactly how much microbubbling is occurring and eliminate the stenosis risk... and other risks such as perforation, pericardial effusion and stroke....(so says this report.)

Keep in mind also - Dr. Natale is doing 3 ablations a day now, but not 5 days a week and the other EP's are also very busy.... so they are generating alot of case studies. I think it is better to have an ablation performed by an EP who has many hundred successful ablations in his past experience...Then if they can say ..."I've never had a case of stenosis, or a vascular accident, etc, then I'd be reassured they have enough experience. Last spring when I was checking around for an EP, Dr. Natale had done over 600 and so had Marcus Wharton, MD. I was comfortable with either of those EP's to handle my case and I chose Dr. Natale because of my geographical advantage.

How can we know the reports are truthful? I don't think we can know -absolutely. Nor do I think we can trust in blind faith. But my gut instinct tells me that if some EP were touting 80% and his results were coming out more like 30% and he was injuring patients as well, the word would be out and we would know it. These things are not kept silent thanks to the advent of the Internet. Here on this forum, we have learned of a few badly handled ablations...the injured parties are not going to keep quiet.

I'm not sure what I've contributed here, Jim, will help with your decision. It's a big step in choosing an EP with alot of factors involved.... insurance restrictions, convenience, geographic location, and of course.... choosing the right EP for you.

That said.... my past 7 weeks post ablation have been what I view as a mini-miracle. No afib, no flutters, no ectopy...going off drugs next week...but I'm weaned down to virtually none at this time so I don't think it will be a big event. It was a very smooth experience, overall. So far, I have no regrets. In hindsight, I would have done a few things differently, but as it turns out, no big deal.

I wish you well in your decision if and when you decide to go for it.

Kind regards, Jackie
Re: Hans....and others....
December 31, 2003 01:13AM
Bob - Thanks for your report. You have certainly had to endure more than the average person and I am delighted you now have relief. It will just take time. Bit by bit, you are explaining the complexity of your case and I marvel that you were able to function at all. That is a dreadful story.

But the happy news is you can see the light at the end of the tunnel. High time.

I agree with njb, though. I was told also that the spiral CAT scan is definitely necessary to detrmine stenosis because many people who have it have no symptoms..... not to give you one more thing to worry about, but if I were you, I'd insist that you have one in 3 months. It's standard procedure here in Cleveland (CCF) and mine is scheduled in March.

You remain in my prayers for a complete and successful recovery.

Be well. Jackie
Jeanne
Re: Hans....and others....
December 31, 2003 01:34AM
Jackie,

Just curious. What are some of the things you would have done differently?

Jeanne
Re: Hans....and others....
December 31, 2003 01:57AM
Jeanne - Primarily - the Coumadin issue..... I was not on Coumadin so it was suggested I go on it for a trial to determine my therapeutic dose prior to ablation so I would know the dose I needed immediately after the PVI.

I did this reluctantly because I don't get along well with Coumadin...my blood is naturally thin and I tend to have hematomas with Coumadin.

Sure enough.... from the pressure needed to insert and remove the entry ports in the groin areas - I sustained two very large and painful hematomas on both thighs that were at least 18" long by 10 inches across. The image is still there. In hindsight, I would have not taken the Coumanin beforehand.

Second, Dr. Natale uses Lipitor to decrease oxidized LDL and reduce inflammation at the burn sites. I cannot tolerate statins..and I told them that, but I was told to take it anyway. The same thing happened this time as when I was given a statin previously....muscle weakness and fatigue.
This comes from CoQ10 depletion and even though I was taking Q, I still had a miserable couple of weeks until I took myself off the Lipitor. In hindsight, I would have refused it.

As I said - no big deal, but in retrospect, I should have followed my gut instinct that was screaming at me not to do what I did. The inner doctor always knows best!

No harm, no foul, though. I'm fine now.

Jackie
Jim C. Rose
Jackie.....
December 31, 2003 02:25AM
Thanks for your very informative post. It is most helpful in my deliberations.
Jeanne
Re: Jackie.....
December 31, 2003 03:10AM
Mine, too!

But one mor question, if you do not mind, Jackie. Would you do it again and are you well now?

Sorry, that was two.
Hans Larsen
Re: Jackie.....
December 31, 2003 03:53AM
Jim,

According to the latest ablation survey (The AFIB Report, November 2003) the overall success rate for the pulmonary vein isolation procedure was 68% for procedures performed in 2002 or 2003. The definition of success used is no afib and no drugs three months after the procedure. It is highly likely that the success rate at the Cleveland Clinic and other top centers is significantly higher. Of 70 afibbers surveyed only one had developed a serious case of stenosis, but a lot had not been checked at all. I personally don't believe that stenosis is a serious problem anymore. The use of ostial ablation, ICE and advanced mapping techniques has helped enormously to prevent it.

Hans
Glenn Camp
Re: Jackie.....
December 31, 2003 06:43AM
What percentage of ablations (PVA's) are done segmental instead of circumferential? And wonder why more are not segmental?

The main thing that concerns me about ablations is the possibility of vein punctures, etc.. Then they have to open you up and repair them.

Glenn
Re: Jackie.....
January 01, 2004 01:54AM
Jeanne - You're allowed as many as you like.....


Answer....yes - so far. I'm not officially cured, I am definitely enjoying success of no afib and NSR every day - now into my seventh week post-ablation.

The whole procedure was not anywhere near the ordeal for which I had prepared myself. I really over-trained. But, in hindsight, I'm glad I was prepared for the worst because it was such a "high" to realize it was over and I felt absolutely fine.

Today.... New Years Day... it is indeed a new year and one worth celebrating for a very long time.

But, until I have the official all clear, I'd better temper my celebrating.

I feel blessed to have had the privilege of Dr. Natale's skilled hands, knowledge and expertise. It is said he has magic hands. I believe he does.

Jackie
Jeanne
Re: Jackie.....
January 01, 2004 02:20AM
Jackie,

Thank you.

You and others on this forum give us with AF hope.

Happy and Healthy New Year.

Jeanne
Carol
Re: Jackie.....
January 01, 2004 04:05AM
A friend of mine had a vein punctured during an ablation procedure at Mass General Hospital and had to undergo major surgery. During recovery at the hospital he developed an infection which nearly killed him. Another -ventricular - arrhythmia developed while there and he then had to have a pacemaker put in . The pacemaker has to be tested every six months at Mass General and to do this they have to stop his heart. He and his wife live in fear of these six month visits. Oh, yes, he is on drugs for the arrhythmia, too.

Another friend of mine, a NYC doctor, a hemalogist, Harvard Medical School grad, went to the Cleveland Clinic to have a routine mitral valve repair done. He died on the operating table. His wife, a close friend of mine, says point blank "They killed him." She is very bitter.

These are the reasons that I shy away from having an ablation and tough it out. Just plain scared.

Carol
Re: Jackie.....
January 01, 2004 06:50AM
Carol - I don't blame you one bit for shying away from ablation. Most certainly there is a risk. What happened to your acquaintences is certainly tragic and inexcusable, but not uncommon, unfortunately. All the more reason to choose your EP very carefully if one would ever contemplate an ablation.

An even greater risk of iatrogenic trauma enters the scene when one goes to a teaching hospital. Believe me, I certainly gave that thought a lot of attention because CCF is a teaching institution.

As I have mentioned over and over again, it is a very personal decision to have an ablation.

I think everyone should always know all the risks of any type of medical procedure. We all can relate horror stories of simple procedures gone awry.

Because I strongly believe that all possible efforts to reverse the arrhythmia should be investigated by natural means and without relying on the use of drugs with all those side effects, I continue to research the possible connections of biochemical deficiencies and arrhythmia.

Now that I've had the ablation and am doing very well, I'm in a great position to continue to research without the threat of giving in to an afib event or feeling badly for days after.

My mission is still the same - create awareness and help others find natural solutions to health problems and, foremost.... stay healthy to avoid the problems to begin with.

Knowledge is power.

Thanks for expressing your concern, Carol. Everyone needs to be aware that ablation is a serious consideration.

Jackie
Carol
Re: Jackie.....
January 01, 2004 08:12AM
Thanks, Jackie

You made me feel better about my post. I was so uneasy about posting that negative information. I felt like I was a scare mongerer! But I had to say that even though my life is turned upside down by afib, I can't bring myself to even contemplate an ablation.

Thank you also so VERY MUCH for staying with this web site, even though it looks like you are "out of the afib woods." Your knowledge and help are so important to all of us. Bless you for sharing it with us, Jackie. Don't disappear, please!

I am now investigating a spinal (neck) misalignment as a possible cause - or could it even be more than one cause in a single individual - for my afib. Two chiropractors found a bulge on the right side of the spinal column in the neck, that indicated a disk severely dislodged. Last night I experimented with pillows and found I could stop the extra beats by positioning my head. ?? I wonder if pressure on the vagus nerve in that area when lying down could be triggering afib and that uneasy feeling in the gut that precedes an attack.

Carol
njb
Re: Jackie.....
January 01, 2004 01:34PM
Jackie - I also got some huge scary looking hematomas on my groin. I couldn't imagine they would ever go away. But now almost 5 months later, I can barely tell they were ever there. I think it was worth it to avoid the possiblity of a stroke.
Re: Jackie.....
January 01, 2004 01:40PM
Hi Carol - As I said, I think it is important to view all sides of an issue and you very wisely brought us your information. I had read many such reports and know of many "accidents" from my many years in clinical chairside interactions with patients. I heard some of the worst, saddest and remarkable stories about things gone wrong in the OR.

I think you are very wise not to want an ablation, just because it is available. When the time comes and you've had enough, you'll know whether the big decision is for you or not. Very personal choice.

And, I'll be here on the BB for a while. I may have had an ablation, but I still am closely connected to the BB, the people and my desire to search for a solution without drugs. So, for the time being - I'm not disappearing.
This is too important to me.

I recently attended a Metagenics seminar and one of the topics discussed was the triggering of fibromyalgia from a hyperextension of the neck - as in whiplash.

It's been found to be a definite cause of FM and this just makes me wonder if your misalignment hypothesis is right on target.... and I would not be at all surprised to learn that the vagus nerve is impinged in certain positions.

The question is... what's the solution...certainly soft tissue manipulation. My chiropractic treatments involved neck manipulation up into the occipital
(atlas) area for thyroid balance. It helped greatly and is what I consider to be one of the contributing factors for stopping the afib prior to ablation. I hope you continue with the chiro approach and let us know what transpires.

I'm so sorry you are having a bad time of it. Remember when you were so well and you were MY inspiration for trying extra magnesium? This is the puzzlement of this beast. Just when you think you have it nailed, it takes another turn and your are back to square one again.

I'm thinking of you. Take care.

Jackie
Re: Jackie.....
January 02, 2004 02:50AM
njb - Here's the point on those hematomas...... I never took coumadin. I had to use it for the two ER visits I had in Feb 03 and April 03 and the hematoma I sustained at that time were so bad, I refused to continued using it. So I was off Coumadin from April to two weeks before ablation.

They new it at the CCF and were fine with it - in fact, they said, good because I could have been called in sooner for ablation in a cancellation spot since I was not taking it and wouldn't have to go off before ablation.

Then, they wanted me to go on it for two weeks to determine what dose I would need....and go off it 4 days before ablation. I went off it 5 days before ablation and still had the dreadful hematomas. It wasn't a matter of stroke prevention...I wasn't on it to begin with.... but, of course, now I am and am looking forward to quitting again which is going to be very soon.

I fully understand the stroke risk and why Coumadin is used/ needed/ required.

You and I could have had a hematoma contest....whose legs were the ugliest? Or whose had the most colors? That would have been a hoot!

Mine still show a discoloration but the hematoma, itself, went away after about a month.

Thanks for sharing. Jackie
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