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This patient support community is for discussions relating to heart rhythm issues, arrhythmia, irregular heartbeat, implanted defibrillators, pacemakers, and tachycardia.

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I am having serious concerns about my AFIB ever getting better. I hate to be a downer, but need to express my feelings and would love some support. So far, I've had 3 ablations in the past 2 years. Have been cardioverted a dozen times. And continue to have episodes every 6-7 weeks. Right now, I am on amiodarone (a BIG hammer med that has lots of side efffects). My electrophysiologist cardiologist took me down on my dose and 1.5 weeks later I ended up having to be cardioverted so she put my dose up again.
I am wondering if a second opinion is called for. I really like my EPCardio, but my condition is not getting better and is, in spite of the ablations, worse than before. The medical staff where I go say I have a particularly resistant kind of AFIB and that surely appears to be so. I just started working 4 days a week to try to relieve some stress.
I was reading that DeltaDawn who posts here, says they are researching new treatments. I hope this is true and soon is good! My doctor doesn't want to do another ablation anytime soon as during the last one she encountered scar tissue from the first two.
Any ideas, thoughts, suggestions are appreciated!
thank you all...
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612551_tn?1247839157
You didn't mention the condition of your heart, e.g., is the left atrium enlarged?  That is my main problem with AFib, and both my cardiologist and the consulting EP said an ablation would be worth trying, low probability of success.  I have undergone a mini-maze procedure when I had a mitral valve repair (open heart surgery) and that didn't stop the AFib.  This is another reason my doctors don't support an ablation for me.  On the plus side, my AFib symptoms are reasonable, i.e., mostly just fatigue (from meds mostly) and limited endurance.  I can walk on the level for miles, but a hill, that's another matter.

I understand a second opinion based on analysis of your existing test results, and perhaps a letter from your cardiologist outlining the diagnosis, via the mail with Cleveland Clinic.   I friend of mine did it and I recall it was not covered by Medicare (that is worth checking on) but the out-of-pocket wasn't high.   Thinking about Medicare, I was over 65 when my cardiologist referred me to an EP, and that got the usual coverage without any prior approval from Medicare.  That's the old Medicare that existed in 2008, but I think the only changes since that time may be the Medicare payment rates.

I have not tried to go further with my case, such as the 5 box which I read about on this community.  
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Mary -- I see you are on the western side of the country.  If you go to StopAfib.com, there is an article about a doctor at the University of California in San Diego that is doing a new kind of ablation that is taking out afib with much shorter ablations and is successful up to 80% in the ones that have been done.  The results are also being duplicated at other centers.  the doctor's name is Sanjiv Narayan and the procedure is FIRM (focal impulse and rotor modulation) ablation.  My EP says this is the coming thing.  I don't know what your situation is as far as being able to travel, but this procedure might be offered nearer to where you live.  Also, there is an article about Dr. James Reiffel about treating afib with new drugs.  "He talks about the combination of ranolazine (Ranexa) and dronedarone (Multaq), both used in lower doses, and about other coming atrial-selective drugs."  Dr. Reiffel is Professor of Clinical Medicine, Columbia Univerity College of Physicians & Surgeons, and attending physician at NY Presbyterian Hospital.  Multaq is supposed to be Amiodarone without the bad side effects.  I wonder if you could contact these doctors and maybe fax your records and get an opinion.  Here in the Midwest, the Cleveland Clinic is the best place for heart procedures.

I am glad you are able to work fewer days.  I think one reason I am better is less stress since I retired.  I also read that meditation will decrease afib attacks my half.  It might be worth looking into.  I know when something stressful is going on and my adrenaline starts pumping, I am at risk.

  I think I would definitely seek another opinion, since your situation is not improving.  Unfortunately, I think that it is very easy to fall thru the cracks and we don't get quality medical care unless we seek it out and take charge of our situation. . . . "the squeaky wheel gets the grease . . . ."  I wish you luck.  Please don't despair.  I really feel like there is an answer out there for you.  Keeping you in my thoughts and prayers.  Let us know if any of this helps.  
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Mary -- just wondering if you'd read the posts regarding the 5 box thoracoscopic maze.  One guy said he'd had 2 catheter ablations and then the 5 box worked.  Just thought I'd mention it.
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612551_tn?1247839157
You didn't mention the condition of your heart, e.g., is the left atrium enlarged?  That is my main problem with AFib, and both my cardiologist and the consulting EP said an ablation would be worth trying, low probability of success.  I have undergone a mini-maze procedure when I had a mitral valve repair (open heart surgery) and that didn't stop the AFib.  This is another reason my doctors don't support an ablation for me.  On the plus side, my AFib symptoms are reasonable, i.e., mostly just fatigue (from meds mostly) and limited endurance.  I can walk on the level for miles, but a hill, that's another matter.

I understand a second opinion based on analysis of your existing test results, and perhaps a letter from your cardiologist outlining the diagnosis, via the mail with Cleveland Clinic.   I friend of mine did it and I recall it was not covered by Medicare (that is worth checking on) but the out-of-pocket wasn't high.   Thinking about Medicare, I was over 65 when my cardiologist referred me to an EP, and that got the usual coverage without any prior approval from Medicare.  That's the old Medicare that existed in 2008, but I think the only changes since that time may be the Medicare payment rates.

I have not tried to go further with my case, such as the 5 box which I read about on this community.  
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Thank you all for your informative, supportive replies. I am looking up the different procedures and will talk to my doctor about them next Friday when I see her. I am quite sure my healthcare provider, Group Health, a large organization, allows for a second opinion. Even if they don't, having 3 ablations, numerous cardioversions, lost work time, is all adding up quickly.

Jerry: My heart is structurally sound, no blockages, etc. Just the stubborn electrical system.

I anticipate my healthcare team is ready to either get a second opinion or to try something else. They are as discouraged and frustrated as I am. When I go to Urgent Care, the staff is amazed I've had 3 ablations and all the cardioversions, on amiodarone and still having the episodes I have. Will do more research on the 5-box, new med combinations, etc.

thank you again, I really appreciate all the options and support you share!
best to all in this a-fib boat...
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1569985_tn?1328251082
Jerry -- I had the idea the mini-maze procedure and the 5-box procedure are  the same thing?  Am I off-base here?  It sounds like your afib is well controlled.  Mine is too, at this point, and I am very grateful.  
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612551_tn?1247839157
I believe that is correct, but the 5-box is less invasive, I believe.  I am not an expert.

In any case the mini-maze is "strong" treatment, but as my case proves it is no guarantee.

As I noted in another post in the last week to 10 days, my heart beat sounds different on my stethoscope and the resting HR is a bit slower.  I also think, I do not have a hard record, just my memory (ouch) the irregularity of my HB is less, maybe an out-of-time beat every 10 or so.  One thing I have learned is that the double beat one hears are both due to the ventricle - once when opening and once when pumping.  Thus, my thinking one of the beats was the atrium appears to be false.  This I got from my son, a medical doctor and anesthesiologist.  I may have quoted him with some error, but the part about one of the beats being the "P" wave (atrium) is not the case.  I still recall that over the years of listening to my ventricle beat when I am in AFib I did not hear the double beat until recently...and too my HR is going lower.  

MaryLL, I don't mean to hijack your thread, I hope what I say here is also information you may find some use for.  This may also prove good tools, stethoscope, in untrained hands can produce erroneous conclusions.  But I remain hopeful.  
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1317224_tn?1378708734
No worries! I appreciate all information...
best to you all...
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1317224_tn?1378708734
I talked to my electrophysiologist/cardiologist last week. After emailing her some thoughts from here on where to go next, she has made an appointment for me to see a cardiovascular surgeon next Monday. We will discuss various mini-maze procedures that might be  helpful for my kinds of a-fib.
I have done some research online and am more optimistic at the % results that can occur when ablations don't work.
thanks again for all the support, will keep in touch...
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I wish I had an answer or doctor to suggest, but I don't. But wanted to just offer my support and let you know you are not alone, we're all in this afib nonsense together. I wish you the best in your journey.
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Before the cath labs ablations were being done, the only place in the world that was doing electrical open heart surgeries was The Texas Heart Institute in Houston Texas; my daughter had electrical surgery done there when she was 7 years old; she had to have several cath ablations throughout her teen years due to her heart disease up until she was transplanted, but her original tract never did come back. I know it is a lot to go through, but I would ask about having your tract ablated through an actual surgery and I would go to Houston.
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Forgot to mention: my daughter was also on Amiodarone, fabulous drug but nasty side affects (gave her restrictive lung diease and hypothyroidism along with some severe sun burns). Were you given a loading dose in the hospital? Once Amiodarone reaches a theraputic level it works really well; once stopped the drug can still be found in the body's tissues for up to a year. It has a really long half life, but is is still a good drug.
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Yes, I believe there are "robotic" methods for doing the heart mini-maze (this may be what the 5-box method is, but I am not saying the 5-box is the only robotic procedure).  I do recall, well its been almost 5 years, so my memory is in question, my heart surgeon lamenting that his hospital of which is the director of the heart institute didn't have the funding to implement robotic heart surgery - he had experience with those tools.  I recall he could even do valve repair using robotics, this is different than catheter, to my understanding and I would guess for valve repair the heart has to be stopped, thus the heart/lung machine must be used.  I expand on the subject again, I am not saying your need means a stopping of the heart, but it may be something you'd want to ask the surgeon if the subject doesn't come up in the course of the interview.

I wish you the best of doctors, that's better than good luck, but I wish that too.
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1317224_tn?1378708734
Just a followup:
I saw the Cardiothoracic Surgeon this week and we have set November 13 as the date for a bilateral thoracoscopic mini-maze. He went over the options, explained the odds (70-75% of patients have no a-fib symptoms for at least 10 years) and the risks (1% die or have serious complications after). I have no other health issues so am a good candidate.
I feel hopeful, anxious, and a little scared all at once. It does feel good to be trying another option.
I do appreciate all your support and will keep you posted.
bless you all!
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I have had 3 ablutions and also put on Amiodarone, but my agin is back and as bad as ever, I have no clue what to do now either, Help!!!
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Sorry, afib
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1317224_tn?1378708734
I totally get where you are. I had 3 ablations, was on Amiodarone and had had so many cardioversions I couldn't count them.
I finally, 15.5 months ago, had a bilateral thorascopic mini-maze and have had NO more a-fib episodes since. I was discouraged as you are and asked for a second opinion. (my only regret being I didn't ask for one sooner).
I am so grateful to have had the surgery. It was a rough recovery, made more difficult by my getting pneumonia. I was off work 7 weeks but the pneumonia recovery was much worse than the heart surgery.
I encourage you to talk to your doctor and reach out to other medical facilities if you need to. I'm not sure what part of the country you are in. I'm in Seattle and my procedure was done by Dr. Mark Hill at Virginia Mason Hospital. He had done over 200 before and promised me that "no one has ever been worse after the surgery."
Wishing you the best. Life without a-fib is worth fighting the medical system for. Hang in there.
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