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A-fib and left atrium diameter. My A-fib experience.

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  • A-fib and left atrium diameter. My A-fib experience.

    Dear all:

    First of all, let me excuse for only now send another email to this forum, after sending my first email about 2 years ago (I have copied below my first post, in which I have introduced myself). I often visit this Forum, which has been an excellent source of information and personal support. For a long time I was planning to write again but unfortunately, for several reasons, I never did so far...

    During the past days, there has been some discussion about a-fib and radio-frequency ablation. Because I have learned some about this during the previous three years, I would like to share my own experience and ask some questions: I am 34 year old and have Hypertrophic Cardiomyopathy. I am currently in permanent a-fib. My first episode of a-fib was in June 2002: chemical cardioversion with amiodarone was tried but not worked, followed by successful electric cardioversion after 3 weeks with INR 2-3. The same happened on the second episode (June 2003). On the following three episodes (3rd: June 2004; 4th: October 2004: 5th: December 29, 2004), electric cardioversion was tried successfully before 48 hours of onset.

    Two days after the 5th episode (December 2004), I was again in a-fib and the doctors (at the emergency in the Hospital) decide not to do cardioversion again. After that, I persuade my own cardiologist to do another cardioversion in early February, which did not work. I forget to mention that during these three years most of the time I was taking amiodarone (200 mg five days per week). I was aware of all the risks and I never liked to take it. Any how, I must say that I did not have any side effect besides becoming too sensitive to sun light. Now I am on sotalol (160+80mg daily) and, of course, varfine.

    I was schedule for a radio-frequency ablation in Lisbon, where there is some few years experience on that. The doctor who was going to do it, told me to not expect more 50% success after learning that I had HCM and looking at an Echo where my left atrium diameter was 59 mm (this echo was from 2003). He asked me more exams (namely a more recent echo) and scheduled the ablation for late April. Thus, I had another Echo (March 2005) and find out that now my left atrium diameter is 64 mm. Knowing that the doctor cancelled the radio-frequency ablation, because he said that there was only a 20-30% success. He said that I would have to live with a-fib to the rest of my life, which I haven’t yet accepted.

    After reading a lot of papers -- I have access to many International Journals in the internet since I am an assistant Professor at the University of Coimbra, trying to finish my PhD dissertation without much success during the past 3 years--, I found out that the size of the atrium (mainly the left atrium) is an extremely important issue in a-fib. For example, the success of radio-frequency ablation or the maze operation is considerably low for left atrium diameters bigger than 60mm.

    Sorry for having written so much… I must finish. But I have three questions:
    1- For those who have experienced a-fib (Sarah, Paul, JoAnn …) what is the diameter of your left atrium?
    2- Does anyone on the forum done a radio-frequency ablation for a-fib?
    3- For those with permanent a-fib. What is your heart frequency? My doctor mention my heart should be on 70-80 beats per minute, however it is always quicker than that.

    Next time I would like to share you some information and questions I have on radiofrequency ablation, maze operation and a more recent technique (Atrial Reduction Plasty Cox Maze Procedure). To which forum should I send my post?

    Bye for now

    Fausto

    PS Just a note about radio-frequency ablation. There are different types of catheter (or Surgical) ablation of atrial tissue, namely isolation of pulmonary veins, linear ablation, circumferential… with different results and needing different expertise. In Europe there are two well known centers for radiofrequency ablation:
    1-Bourdeaux, France (Drs Jais and Haïssaguerre), who pioneered this technique in 1994 and
    2- Milan, Italy (Dr Pappone).
    I have contacted these two centers and I can share some information. Sorry but I don’t know much about the USA situation.

    -------------- ----------------
    Posted: Wed Mar 12, 2003 8:01 pm Post subject: Hi, new user from Portugal

    Hi, my name is Fausto Freire and I am 32 years old. I am from Europe, more exactly the south - Portugal. I was diagnosed with HCM (with obstruction) 9 years ago (when doing the inspection for military service, which of course I've failed - this was the only good news... However I must also acknowledge that having HCM changed the way I see life (in a better way, trying to do a better job enjoying every moment!)

    This email is to introduce myself and to thank you all very much for creating this association and maintaining this site. I have been checking it for a couple of years and I really find it very useful. Besides having the opportunity to know what people like me feel (I have never met personally anyone else with HCM...) it has been a very good source of information.
    (…)
    Thank you very much and congratulations for your excellent work. It has been an excellent help.

    Fausto

  • #2
    I'm sorry that I don't have anything to add to your discussion but I want to welcome you back to our community. Thanks for sharing you story and I hope others will answer you soon.

    Reenie
    Reenie

    ****************
    Husband has HCM.
    3 kids - ages 23, 21, & 19. All presently clear of HCM.

    Comment


    • #3
      Hi Fausto,

      Welcome to the HCMA board. Sounds like you have been through **** with your a-fib. I am very sorry. Are you terribly symptomatic? I am and find that I cannot function at all.

      It seems like we some things in common: I am 35, a Research Fellow at a university and also have atrial fibrillation! My a-fib only started after my myectomy surgery 9 weeks ago. I had successful electric cardioversion then. However, on Friday I went into a-fib again and was successfully cardioverted last night. So far I am still in sinus rhythm. I started taking Amiodarone 2 days ago, but your experience shows that this medicine does not guarantee success.

      I had my last echo 6 weeks ago and my left atrium was meassured at 5.6 cm. However, I have had several echos over the years and the size has been measured as high as 6.3 cm. I have also read that the size of the left atrium is important in determining if ablation/surgery etc. will be successful.

      However, I have had a myectomy, and there is some evidence that left atrium size decreases post-surgery. This is turn might lead to a reduction in atrial fibrillation (see the ACC/European Society of Cardiology expert concensus document on HCM from 2004). If my a-fib returns I will definately explore surgical and non-invasive procedures, as well as pacemaker/defibrillator options if these are at all possible.

      I have an appointment with a well-respected Electrophysiologist tomorrow afternoon and will discuss all of these options with him. I will give you a full report after I meet with him.

      Take care,

      Paul
      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

      Comment


      • #4
        My left atrium is around 4cm and I take 100mg of Toprol XL (the extended release version of metoprolol) 3 times a day. Yes, I take a 12 hour pill every 8. It keeps my heart rate down around 70 or 80.

        And yes, I'm tired all the time.

        I do not want to do any ablation procedures as I'm not a good candidate. I have too many different kinds of arrhythmias to make a anything lest than a serious maze work. Yuck.

        Good luck with your journey.

        Comment


        • #5
          Fausto,

          My medical file includes the terms "giant atria" and Afib. "Giant atria" is a technically defined term which, according to one definition I read, means the atria is in physical contact with the lateral wall of the chest cavity. I looked that up because my cardiologist used it in an echo report. (If I could find that definition again I'd provide a link.) Anyway, my left ("giant") atria is 10 cm and the right is similar but not quite as large ("huge" but not "giant"). In the MRI image of my heart the atria look like they're inflated like balloons.

          I went into chronic afib sometime in 1997 (at age 43) and felt pretty poorly, with all the signs and symptoms of CHF. If I recall correctly, my heart rate was elevated and I would break into a sweat whenever my heart started to begin racing-away. Beta-blocker (atenolol) and calcium-channel blocker (Diltiazem, in my case) helped bring things under control to the point I could work (I'm an engineer and work mostly in an office environment), but I never got out of afib. In 2004 things took another turn, but that's a story for another post.

          It certainly seems like you've done your research on Afib and enlarged atria (your post includes information I've never seen--thanks). It's my feeling that you might want to investigate treatment options which might reduce the internal pressures in your heart to help prevent further atrial enlargement. I really don't have a handle on what these treatments might be over and above beta- and calcium-channel blockers (Norpace perhaps?) since I'm beyond that point (and heading for the Western U.S. regional transplant list) and never really investigated such options.

          Best regards!
          Rob Thomas
          --Living life on the edge .. of a continent!
          Charter member: Tinman Club

          Comment


          • #6
            Thank you for the prompt reply to my questions.

            Paul:
            Yes! We have many things in common. What is your research field? I am a mechanical engineer doing research and teaching on environmental and energy management.
            Also Yes! My a-fib has been giving me some hard times. Fortunately I am not terrible symptomatic (my gradient is around 30 mmhg and my septum 18 mm), but now sometimes I have a hard time walking up stairs, in particular when I get a cold or something similar, which happens quite often since I also have allergic rhinitis and asthma. We need to share some information: Please let us know what have you learned from your appointment with the electrophysiologist. I have collected some very recent papers on catheter or surgical radiofrequency ablation, which I can share with those interested.

            Sarah: It seems that we also have some things in common. For how long have you been in permanent a-fib? Because you left atrium is not much dilated, it seems to me that you could be a good candidate for catheter ablation. Also, for sure do you know that with catheter ablation it is possible to eliminate other types of arrythmias. Thus, can you please explain why you are not a good candidate for catheter ablation? I have another question for you. I don’t know much about metoprolol. But it is a beta-blocker, used manly for rate control in a-fib. Correct? Since you have “many different kinds of arrhythmias” why are you not taking an antiarrhythmic or for example sotatol which as you know as an hybrid effect (antiarrhythmic and beta-blocker)

            Rob Thomas: Yes I have read something about giant atria. Because you are on the “heading for the Western U.S. regional transplant list” (GOOD LUCK!) I am not sure if this is useful for you, but anyhow I have seen this paper with nice results:
            Suk Jung Chooa et al. (2004) Excellent results for atrial fibrillation surgery in the presence of giant left atrium and mitral valve disease. European Journal of Cardio-thoracic Surgery 26 336–341
            and also this:
            Romano et al (2004). Atrial Reduction Plasty Cox Maze Procedure: Extended Indications for Atrial Fibrillation Surgery. Ann Thorac Surg ;77:1282–7
            where in addition to Cox Maze surgery, a reduction of atrium size was performed with very good results for very enlarged atria.

            Bye for now

            Fausto

            PS
            1-I will be out for one week, without access to internet
            2- Please excuse some English grammar errors

            Comment


            • #7
              An atrial measurement of 6.0 or greater is going to be a challange to maintain sinus rythm. Regardless of what method you pick it is going to be hard. I will make some calls in the morning to get some advise on your situation and see what I can find.

              Be well,
              Lisa
              Knowledge is power ... Stay informed!
              YOU can make a difference - all you have to do is try!

              Dx age 12 current age 46 and counting!
              lost: 5 family members to HCM (SCD, Stroke, CHF)
              Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
              Therapy - ICD (implanted 97, 01, 04 and 11, medication
              Currently not obstructed
              Complications - unnecessary pacemaker and stroke (unrelated to each other)

              Comment


              • #8
                I've been in chronic afib for about three years now. I am not on sotolol because I tried early in my afib saga and it failed, so we switched to dofetilide which did work for a while. I couldn't take the sotolol and dofetilide at the same time, so I just continued to take the beta-blocker I was on when it stopped working.

                I have been to the Mayo, Cleveland, taken sotolol, disopyramide, was the third person the Mayo gave dofetilide, and have been offered an "ablate and pace" where they kill the A-V node and make you pacemaker-dependant. I've also been offered a Maze. However, no one at three hospitals over the last ten years has suggested the type of RFA you mention. My arrhythmias are not consistent in any way, which makes ablating them out a challenge and the HCM makes it unlikely to "stick."

                When I was at the Cleveland Clinic (my most recent major evaluation, almost 2 years ago) I was supposed to see the afib guys, but they never materialized and I was also asked to stay another day to see someone else for a new research project but when I showed up, I was told that that doctor wasn't in and no one else could help me.

                I know that many people have had awesome experiences at Cleveland but mine was less than thrilling.

                I am disillusioned with the entire Western medical profession at this point (search for posts authored by me that include the word "malpractice" and/or "stroke" if you want more back story) and am very leery of letting anyone ablate my heart until I see some better stats.

                If circumstances permit, I may hit the Mayo up again for a checkup later this year, circumstances permitting, since they are the only ones I would let do such a thing.

                Comment


                • #9
                  Lisa,

                  Did you get a chance to make some calls about a-fib treatment etc. and if so, what did you find out?

                  Paul
                  Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                  Comment


                  • #10
                    Sarah: what I have been reading is that there has been a great development in RFA for a-fib in recent years. A few years ago only paroxysmal a-fib was been treated, now also permanent a-fib is treated but using a more complex RFA technique. For recent stats I would recommend a series of articles that were published in the Journal of Cardiovascular Electrophysiology ( "EDITORS’ NOTE: This is the first of a series of three articles on techniques of ablation of atrial fibrillation. We invited three of the leading laboratories to explain their different approaches to this problem. The laboratories of Drs. Pappone, Natale and Haissaguerre.") I could not find yet the paper from Natale. The other two papers are:

                    Pappone , C, Santinelli, V. The Who, What, Why, and How-To Guide for Circumferential Pulmonary Vein Ablation. J Cardiovasc Electrophysiol, Vol. 15, pp. 1226-1230, October 2004.
                    Hocini (...) Haisssageure Techniques for Curative Treatment of Atrial Fibrillation. Journal of Cardiovascular Electrophysiology, Vol. 15 Issue 12, pp 1467-1471. Dec2004

                    In the Pappone paper it is mentioned that 21% of all patients treated with RFA had left ventricular hypertrophy: 21% of 3980 patients (=835), but an exclusion criteria is left atrium diameter greater than 65mm. I can email pfd files of these paper to those interested.

                    Fausto:
                    Lisa: I am be looking forward to learning what you find out... but only after HCMA annual conf. Thank you!

                    Paul: Have you met with the "well-respected Electrophysiologist"? Do you have news?

                    Comment


                    • #11
                      Fausto,

                      Welcome back to the Board. You can find my report about my visit to the EP on the 'post myectomy a-fib' thread. In summary, his preliminary assessment is that his team could help me, but that 'not many doctors would take me on' because of the difficult of the procedure. But they could do it and with an approximate chance of success around 60%; more if they did mulitple procedures.

                      Thanks for finding those articles; I've accessed them through my university's database. The one by Pappone is very intersting and shows that Pulmonary Vein Ablation IS used on people with HCM. It is too bad the authors of the study didn't provide any data to show how successful their techniques are in specific sub-groups of patients (i.e. those of us with HCM).

                      I will look forward to hearing more of your research on a-fib. I will meet with my EP in 8 days. I should be able to give a detailed report on the new procedures.

                      Take care,

                      Paul
                      Age 38, dad of two young children, dx 1996, myectomy March 2005, a-fib issues, due for ICD soon.

                      Comment

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