I have had two ablations to date but still suffer from A Fib, usually after eating large meals or during the rest periods after exercise. I also observe a significant, temporary reduction of my heart rate during exercise if I burp (10 - 15 bpm). I have had A Fib for 10 years. Every medication I've tried - and there have been a lot of them - seem to make things worse. I've had the mini-maze procedure recommended by my EP but am concerned whether they truely have my A Fib appropriately diagnosed. I only recently discovered the 'vagally induced' form in the last few weeks, which seems to most closely describe my situation.
The discussion I see from your web site is from 1998 and suggests a pacemaker, which is something I don't want to have if possible. I'd rather 'live with it'.
I am one of the 'aging athletes' they talk about and have a low (~50) resting heart rate. I'd still like to ride my bike and ski. What can I do?
I believe you should be able to "rind" your bike and "ski"... I say that in the context that you do not push you HR above reasonable numbers, say 160 or so if you can stand it, and it sounds like you can.
The main concern I'd have in "living with it" (as is my case) is that you protect yourself against clot formation from the AFib. In your case a simple aspirin a day may be sufficient, talk it over with your doctor. I am a good bit older than you and I have to take both Warfarin (an anticoagulant) and a beta blocker to lower my ventricle heart rate. I was still a "runner" up to the age of 67 and had my AFib under control up to that point, i.e., I was in NSR using drugs. I also had a mini-maze when I had to undergo heart surgery for a valve problem. The mini-maze did not cure my AFib. The surgeon gave me about 60% chance of success, I fell in the 40% group, sorry to report.
Hey look and read my 5 box thorocoscopic maze title entry in this site. I suffered from persistant afib and so far Dr Sirak at Ohio State University has stopped my afib. The difference between the mini maze and the 5 box is he is able to better duplicate the lesions associated with the Cox Maze procedure, which has a higher cure rate for afib than any other procedure. The difference between the ablations you have already had and the 5 box is ablation deals with the problem on the inside of the heart. The 5 box deals with the problem on the outside of the heart. Go to Ohioafib.com and read ALL the areas discribing this procedure. I can also put you in touch with several people that have had it done.
Jerry - My plan is similar to what you suggest for now...keep the HR low. I just got off the last meds, which seemed to cause more A Fib than they helped, and feel much better. The problem is when my 8 year old son and 6 year old daughter want to take daddy down those double black diamond runs. The old HR gets right up there with that work. Moreover, with the meds I wasn't able to exercise at all without going into A Fib so I'm starting from a pretty low fitness level. Yesterday I spend three hours in A Fib after exercising, which included
Pete - I'll check out the 5 Box. One trouble I'm having is the mini maze provider in Oregon told me they received a letter from Blue Cross saying they are considering the procedure 'experimental', so we're on the slow track and I have time to do more research.
I guess common sense would make me ask is all of this being done by the same physician and same EP? I know if it were me and i was still having issues and they want you to take the wait and see approach i would go to a heart doctor LOCALLY that has a good reputation to seek a second opinion which i think in most cases is warranted. It never hurts anything to get a second opinion from someone that lives in your community or the surrounding communities ...... i would do intense research on a doc close to you within driving distance and have them come in as they say blind or clean so you can get an unbiased opinion because in todays medicine there should be something that could be done or a plan of action to move you forward towards relief. Be very cautious when you are referred by anyone to a specific doctor or hospital on any site Leika007....all of our situations are completely different and there is no boilerplate diagnosis because so much of our individuality and prior medical history enters into the mix. The best option i can offer up is to seek a second opinion and one that your insurance company will cover to ward off a financial nightmare for you. Good luck Leika.......
I truly wish I could find a local EP. I live in a smaller community in eastern Washington and the closest good EPs are 3.5 hours away in Seattle or Portland, although one makes occasional trips here from Spokane but he doesn't do procedures. I have been seeing one in Portland who has a good reputation but didn't talk about the vagal A Fib, which makes me somewhat concerned. He suggested the mini maze by the group in Eugene, OR (6.5 hour drive) and I have met with the EP and the thoracic surgeon there. I left there more hopeful since they seemed to want to target candidates with my symptoms.
Being a scientist, I collect a lot of data regarding my condition and relay that to the EP. When I get one that simply wants to put me on another med (NONE have worked so far) I get suspicious that they are grasping at straws. I think over the last 10 years with this I have been on just about every medication.
I have traveled a lot with my job over the last few years (it makes Clooney's character look like a slacker ~500K miles last year as most of it is international) so I have more than enough FF miles to visit just about any Dr. I'm also still in contact with my original EP in Alaska, so I do bounce ideas off him.
Absolutley you need to be on the slow track investigating any option you come across. Being a scientist I would think you have the intelligence level to properly investigate anything to the degree you need to in order to make a rational decision. Obviously the conventional catheter ablation path, although a seemingly safer decision, has not proven to be the cure you were hoping to achieve or maybe even lead to believe. My suggestion for you to look at the 5 box is purely an informational suggestion. You might also check out the stopafib.com site. They have an article about the 5 box also. I would never try to pursuade you, coax you or pretend to be knowledgeable enough to suggest what to lean toward, be it a conventional or a more cutting edge technology, that is your decison and no others. I will keep a good thought for you in your endeavour and hope you can find, with an open mind, the solution to your condition. I was fortunate in that my insurance company paid 98% of my procedure.
From what I can tell, vagal A Fib predominantly comes on after exercise -- typically the cool down time frame -- or after eating a large meal; there are other causes they cite but those don't apply to me: drinking cold drinks, spicy food, etc. It appears to be influenced by the vagal nerve and can even be enhanced by conditioning. I've seen it associated with 'older athletes' who have spent much of their time conditioning, which I guess I fit into...Swim team through high school and part of college, bike team during and after college, then rugby for more than 15 years, then back to the bike and into the pool most recently. My resting HR is low, too.
I think many forms of A Fib, tachycardia, atrial flutter, etc., are all called A Fib because their symptoms can be very similar. Here at work I know of four others with 'A Fib' and we all have different but similar symptoms. I guess the main difference is in the onset. Mine is pretty easy to track and usually goes within a few hours but the symptoms are like somebody dropped a piano on me.
As I said before, my EP recommended the mini maze procedure as performed by James McClelland in Eugene, OR and I have visited with him and the cardiothroactic surgeon, David Duke. Per Pete's recommendation and for my own curiosity, I contacted OSU regarding the 5 box procedure. Not that I'm going to jump in but simply to weigh all the options and risks. Dr. Sirak called me himself a little while ago and we spoke for about 15 minutes. I will ask my EP in Portland to give him a call as well so we can make an informed decision as to the path forward.
I'll advise on the approach I want to take. The one thing I do know is I don't want to go on like this...sometimes I go in on the ski lift after skiing a tough run with the kids and feel like passing out. Not good. But then I do feel the need to 'rehydrate' with a tall glass of IPA at the lodge while the kids continue to ski with their friends.
I'm happy I found this community though. It's nice to know I'm not alone and others have found answers that I can't seem to find elsewhere.
I read once somewhere that 80% of a-fib is vagally based. I was on the Vagus theory bandwagon from the day I started reading of the connection on here. I've dealt with a-fib for 12 yrs and I just got a catheter ablation about 5 wks ago. I'm still not sure it was a good idea. Had the Dr who pioneered the procedure and was up against the wall with 24 hr episodes every week. So I thought the time was right to take my chance. Since the ablation I've had 24 hr episodes of a-fib/flutter every other day. How long have you been dealing with this? Think long and hard on which way to go. I still think mine had or has to do with the Vagus Nerve. I asked my Dr after the procedure if he stayed away from my Vagus Nerve and he said yes, with a little chuckle. I know he ablated my ganglionic plexi which I thought the Vagus Nerve traveled through and also my left atrial appendage. I have had symptoms since that seem vagally -related. I hope it has not been damaged in any way. Good luck on your decision, whatever it may be.
I had two ablations early on and after the 'cooling off' period of about three months, had relatively good luck with them for about two years. After that, I'd feel the A Fib hit pretty hard and usually after relatively intense exercise. In both cases my EP put me on a medication. These usually made me feel worse but the A Fib appeared to cease. After thinking about it recently, I had also effectively stopped exercising at the same time.
In my last iteration of everything, my EP had me on Sotolol for about a year until I began to fail on that -- surprisingly when I started to try to get ready for ski season -- and switched me to dronedarone, which did make me feel somewhat better. I still had the episodes after exercise but they only lasted a few minutes. Finally, the dronedarone failed. After talking with my EP about the surgical options -- he recommended a mini maze in Eugene, OR -- I scheduled a stress echocardiogram. To do this, they needed me off all my medications for at least 48 hours...I thought I'd be in A Fib as soon as I past 24 hours. I did have some trouble after 24 hours but at about 36 hours on nothing but aspirin, I began to feel better and was in good shape for the stress echo. Of course, I went into AF during the cool down, but it told me the meds may have actually been causing some of my AF episodes.
Right now, I'm mostly symptom free but want to be able to be active with my kids (6 & 8). So, I'm evaluating the efficacy of the various procedures. Another ablation is on the list but lowest. It's kind of a toss up between McClelland's version of the Wolf mini maze and the 5 box. My EP knows McClelland pretty well and is urging me to go in that direction but he has expressed a willingness to talk with Sirak. His chief concern there is the small amount of data, and the data that is there seems almost too good to be true. In his view, if Sirak really has something that good, it would be adopted widely pretty quickly and the fact Sirak is the only doing it says we may want to wait and see. I still haven't ruled it out though.
I thought I was taking the best route....now I'm not so sure. I had the Dr who pioneered the procedure, world-reknown, didn't want to pass up the opportunity to have him do it, but a couple of things...I'm not convinced I don;t have some uninvestigated structural issue going on. I do have a slight diastolic dysfunction and about the time my a-fib started 12 yrs ago, the first EKG I had and some of the subsequent ones mentioned a probable MI of undetermined age. I had normal echos and a couple of normal stress tests but the last one 2 yrs ago threw me into V-tach for a short run and they kept me in the hospital and weaned me off flecainide and changed me to Rhythmol. The Dr then said I couldn't take Flec or Tykosin. Well once again the Rhythmol worked about 6 months with no a-fib, but then turned on me and I started having weekly episoeds so last Sept I went off it and the ToprolXL. For months I didn't lave a single episode, then gradually they crept back.
Until the last couple of yrs I did aerobics for the last 20 yrs or more. The a-fib got more and more frequent and I just didn't have the energy anymore. I'm wondering if my meds didn't hold my heart rate down and contribute to the diastolic dysfunction.
After the ablation, which was extremely long, my Dr came to my room and was very evasive. Said all went well, did a lot of burns and that was it. I have yet to speak to him again. His nurses are very protective of his time. He is basically not accessible to his patients. I think I have some tests, CT Angio, TEE, Echo, ect scheduled in Dec. Pete and a lot of others are certainly high on Dr Sirak. His procedure almost sounds too good to be true. In Palm Springs at Eisenhower they do a similar procedure but they have to deflate each of your lungs, one at a time and that sounded scary to me so I decided against it. Sorry this has been so long, didn't mean to monopolyze your thread.
I'm assuming you went to Oklahoma for your ablation. That was one of my choices. My Drs were more 'available' than it appears yours is. I initially had a lot of AF episodes after the procedures but they gradually toned down and I was better most of the time. Now my episodes are really confined to when I eat a lot or after I exercise fairly intensely (during the cool down period). I had a stress echo a few weeks ago and they told me to get off all my meds for the test. I found I felt better and my episodes diminished back to only after exercise and large meals...they had been hitting me all the time. I called my EP and talked with him and he gave me the ok to drop them...two more failed meds...I did go into AF during the cool down after the test, though but after a rest period converted by myself.
Bottom line is you should give your heart some time to heal from the burns before you decide whether it did any good. There are additional options if it didn't work.
I'm now considering Sirak's 5-Box and a version of the Wolf Mini Maze. Sirak's results are pretty good, which makes me skeptical. My and my EPs question is why this procedure hasn't caught fire and taken over the industry.
Hey, why would you think I went to Okla. for my ablation? The Dr who did mine was formerly from the Cleveland Clinic and is now in Austin, Tx. My EP just happened to be in the same practice as him, Dr Andre Natale, so I had access to him, which in retrospect is really ironic, lol. He had a falling out with the CC and they didn't renew his contract. I have gone almost 3 days without any a-fib/flutter. It's the longest break I've had in the 6 wks since the ablation. I guess what I've gone through is still within the realm of normal, but it has been rough.
My Dr.'s bio said...."Dr Natale pioneered a new circumferential ultrasound vein-ablation system to correct atrial fibrillation and performed the procedure on the world's FIRST FIVE PATIENTS. He also developed some of the current catheter-based cures for atrial fibrillation and was the first electrophysiologist in the nation to perform percutaneous epicardial radiofrequency ablation, which is a treatment for people who fail conventional ablation."
I didn't mean to insult you. My original EP in Alaska told me a group at OU was where much of the pioneering effort was and offered to refer me there if I wasn't comfortable with him. I did some research and found he had done just about as many as many others so I stayed there. It went well and held for a few years until I had to have a touch up. That held for a few more and now I want something that will take care of it once and for all. Hence, I'm considering the more drastic mini maze or 5-box procedures.
Oh, that's right...I had forgotten about the Alaskan connection. Do you remember who did your ablation in Ak. and where did you have it done? I went to Dr.'s in Anchorage and out in the Valley, but I don't think any of them were EP's, just cardios. While I was up there I wasn't too interested in going the way of the ablation, but I am curious who was doing them. I'm going on day 4 of no arrhythmia....and I'm soooo excited. Hope I don't throw myself out of rhythm, lol. I'm just going to be very careful and not do anything to rock the boat.
I know I need to be patient. Since I've had a-fib so many years, I know my electrical pathways run deep and it probably took some deep ablating to correct them. I think I read in the report there were 18 spots or areas that were ablated, so you're right...it will take time for my heart to properly heal. The last two years I feel like I've pretty much been a couch potato, and I'm anxious to get active again. Can't wait to see what you are going to do!
OMG....I did go to Dr. Compton years ago, then when we moved back up there we lived in the Valley and I went to Dr Kutchera but I noticed copies of all my records from there were always sent to Dr Compton in Anchorage. I didn't even realize he was an EP. But I guess that explains why they always copied my records to him. I do remember him being a very good Dr with an excellent reputation.
I know what you mean about wanting to be active with your children. I have grandkids and we are taking the 3 of them on a Disney cruise on the new Disney ship, The Dream, and 4 days at the Park over spring break in March and I want to be able to keep up with them. I hope to be enjoying renewed health by then.
When I was initially diagnosed, a friend's father set me up with a 'world renowned' cardiologist at Cedars Sinai in LA because Alaska 'couldn't' have a decent EP. The guy in LA asked why I was there since Compton is 'one of the best'. I stayed in ANC after that. Compton did my first ablation and the second one didn't add much to that one...it was a 'touch up'.
I was just called by the mini maze people who want me to schedule for next Wednesday. I've asked them to have the Dr. call me back regarding efficacy with my particular condition and the fact I've had two previous ablations. The 5-box guy seems to think none of these are a worry. I want to talk with him again, too.
I wouldn't be surprised if I have to have a second ablation since I'm still having long 24 hr episodes every other day. It's been 7 wks today. I'll just have to go with the flow and do what I gotta do. I wish you all the luck in the world with whichever route you decide to take. I think you're gonna be fine no matter what you do. Keep in touch and let me know what you decide.
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