If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Myectomy combined with Maze

Collapse

About the Author

Collapse

Ad Find out more about Ad
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Myectomy combined with Maze

    Hi,

    Long time I was on this board. I'm still alive, but my heart condition has deteriorated. Most of all I'm having to deal with very frequent episodes of AF - commonly 3 times a week lasting 24 hours or so and very tiring.

    My docs proposed RF ablation at first, but I'm hesitant as the success rate for RF ablation on mostly vagal AF coming from a HOCM heart is not higher than 60% or less. And it does not deal with my obstruction, against which my good old disopyramide isn't the wonder weapon it once was.

    RF ablation and PTSMA cannot by combined. I suspect that at least part of my AF is directly caused by the obstruction (18mm septal thickness, gradient 30 at rest and 50 provoked when using disopyramide, even higher without). So I proposed a combined myectomy and maze (I know it's a pretty heavy procedure, but I also know MY and Maze consistently score better in short and long term improvement and slightly better in heart related complications).

    It seems they're willing to perform the combined procedure on me. It also allows removing the atrial appendages (I had a TIA last year, thankfully no lasting effects) and possibly resetting some valves.

    Did anyone have this combination? What was the outcome? Any negative effects such a heart rate problems, heart block, sinus node outage or what?

    Thanks in advance,

    Ad
    \"Hope is disappointment postponed\"

    Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

    Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

    Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

    Meds (current) sotalol, dabigatran, furosemide.

  • #2
    Re: Myectomy combined with Maze

    Sorry to hear you are having such complications. Where would you have this procedure performed? I know there are definitely people on the message board who have had both procedures done at the same time. Hopefully they will chime in.
    Daughter of Father with HCM
    Diagnosed with HCM 1999.
    Full term pregnancy - Son born 11/01
    ICD implanted 2/03; generator replaced 2/2005 and 2/2012
    Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

    Comment


    • #3
      Re: Myectomy combined with Maze

      Thats a lot of work. From a laymen's viewpoint, Wouldn't it seem less invasive to do the myectomy and then see how this affects the AF? ALso, I know they can install a device to block the appendage (I think its called a watchman), which also seems less invasive. BUT, I can also see their viewpoint of "while we're in there, let's fix everything."
      Hope you get the answers you need.
      Marc
      Diagnosed @ 48
      Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
      Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
      AICD - Valentines Day '08, Spark Plug replaced 11/14
      After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
      Quietly going insane . . .

      Comment


      • #4
        Re: Myectomy combined with Maze

        I had the myectomy, maze and also they removed the atrial appendage. I had mine done at Tufts march of 2012. I was dx 25 years ago but realy have no major life problems til the AF kicked in about 10 years ago. Had a few cardioversions that worked great initially worked great but then the amount of time between cardioversions decreased and was thought to not help me enough any longer. I feel great, much more energy, send me an email for more info. It is true that others have had this on this board, 2 people from this board basically walked me through having it done.

        Comment


        • #5
          Re: Myectomy combined with Maze

          Yes, the two procedures are sometimes done together. I wonder if you'd do well to consult with a specialist as to whether that's a good strategy in your case. Some of the Centers of Excellence will offer (for a fee, of course) an opinion based on looking at test records.

          Gordon
          Myectomy on Feb. 5, 2007.

          Comment


          • #6
            Re: Myectomy combined with Maze

            Yes, to echo Gordon. I am not sure whether you have having your procedure done in Europe or you would consider coming to the U.S., but I know that you can get a second opinion from Cleveland Clinic via remote. I am not sure about Mayo.

            And to answer Marc's question, it does make sense to do everything you need to while you are in there. You wouldn't want to ignore the A fib, do the myectomy and just wait to see what happens with the afib because you would then be facing another procedure down the line, and it may even be that a Maze procedure is more effective in controlling A fib in HCM than an ablation. I am not sure about that, but it does seem like alot of people get both done at the same time.
            Daughter of Father with HCM
            Diagnosed with HCM 1999.
            Full term pregnancy - Son born 11/01
            ICD implanted 2/03; generator replaced 2/2005 and 2/2012
            Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

            Comment


            • #7
              Re: Myectomy combined with Maze

              Thanks for the answers so far. To answer mbcube: yes, it is a whole lot, but I specifically want the Morrow and the Maze to be performed together, not apart because that means two procedures. If I were to have different procedures for HOCM and AF, I'd go for the catheter based treatments (PTSMA, RF). But I had (in the past) solid reservations against PTSMA, and I'm still reluctant to go with that. So... having frequent AF and weighing in that the Maze procedure is more effective compared to RF ablation (indeed proposed with watchman) I strongly suggested an all in procedure... Note that my cardiologist at the Antonius hospital in the Netherlands displayed some strong positive body language at my willingness to take a Morrow and Maze instead of the suggested RF ablation... so I guess statistics are really on my side. At my age (49) and general health I should be able to cope with the operation.

              Antonius hospital is considered one of the top hospitals for heart related problems in the Netherlands. They have quite some experience in both catheter and surgical procedures. Remains to check if the surgeon's performing the procedure (specially the Morrow) have good working knowledge and experience with it.
              \"Hope is disappointment postponed\"

              Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

              Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

              Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

              Meds (current) sotalol, dabigatran, furosemide.

              Comment


              • #8
                Re: Myectomy combined with Maze

                Today I had the opportunity to discuss the operation with one of the surgeons performing it. As competence differs a little two surgeons will perform the procedure: one the Morrow, the other the Maze. It will be a standard Morrow, no need to repair any valves, and a left-side Maze with removal of (only) the left atrial appendage. The surgeon talked between the lines by affirming my reluctance to go with catheter based treatments by stating that at my or younger age he prefers procedures that have proven themselves in the long term... Speaking about specifics such as the watchman device used in RF ablation to close the left atrial appendage he (kind of) chuckled that he already had to perform emergence surgery to remove one that dislogded and became stuck in the aorta... So much for the mutual trust between surgeons and 'other MD's' - go figure! Again, knowledge originating from this forum long ago played a major role in triggering me to (re)search and think further.
                \"Hope is disappointment postponed\"

                Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                Meds (current) sotalol, dabigatran, furosemide.

                Comment


                • #9
                  Re: Myectomy combined with Maze

                  I'm glad you had the chance to talk to the surgeon. Knowledge certainly is power!
                  Reenie

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

                  Comment


                  • #10
                    Re: Myectomy combined with Maze

                    And kudos for being informed and proactive in your care! Keep us posted.
                    Marc
                    Diagnosed @ 48
                    Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                    Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                    AICD - Valentines Day '08, Spark Plug replaced 11/14
                    After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                    Quietly going insane . . .

                    Comment


                    • #11
                      Re: Myectomy combined with Maze

                      Hi
                      The names Phil,
                      I went threw a Myectomy & Maze at Tufts Medical, The Surgeon was Dr Rastagar The Cardiologist Dr Maron The Ep Dr Wienstock and the Cardio unit of 6 North were awesome.
                      It was the best decision I could have made, I'll keep it short I think the Maze has the best percentage of working for Afib just because you have HCM
                      Also sense your having an evasive procedure anyways why not. I can't say anything bad about any of these techniques only that the ablation technique can take more than one time it can take two or I even heard three times for it to work, and they go into the heart and do the ablation were the Maze is on the outside.
                      But I do have to say I stayed in Afib longer than I expected. My primary cardiologist told me the Maze must not have worked, I thought I fell in that twenty percent failure rate, I guess thats the chance you have to take for a better life. The Dr even said having an ablation was not an option for me, I might stay in Afib for the rest of my life and lets treat the symptoms with meds she said, Well no way, I went back to the Ep at Tufts for a second opinion was told the Afib I thought I had all this time, looks like Aflutter.
                      They could try a pulmonary ablation, so I read and read about the procedure it actually scared me more than the Myectomy and Maze I had four months earlier.
                      So I did have the ablation, I was worried about them having to go into the left Atrium were the Afib signals mostly come from.
                      Well I'm writing this Afib free, they only had to do the right atrium and I was told the Maze worked after all for the left atrium. I guess having HCM you never no.
                      To sum it up you have to make the decision whats good for you I hope everything works out for you and I wish you the best.
                      And I would go thru it again if I had to, life's to short when you can live it better with these procedures and Dr's we have now. good luck !

                      Comment


                      • #12
                        Re: Myectomy combined with Maze

                        Hi there -
                        I went in to Mayo, Jan 3rd, 2011 for a myectomy. While Dr. Schaaf was in there, he did the Maze for my A-fib as well. We had discussed it minimally prior to surgery, and he said he would see how everything looked when he got in there, so I didn't know until after that he did both. I personally, am very happy he did both at the same time, as it saved me having to be opened up a 2nd time.

                        About 4 months later, I did have some A-flutter, which for some reason decided to appear post-surgery and had to have an ablation for that....oddly, even with the pain, I think I would opt to have my chest cracked again before I let them do another ablation.

                        If you have the option and the doctors think it will help, I would get the two done together.

                        Best of luck
                        Laura
                        Diagnosed with HOCM 11/03
                        A-Fib 4/09
                        Ramipril 2.5mg
                        Baby Aspirin

                        Myectomy 1/3/11 - Mayo Clinic - Dr. Schaff
                        Maze Procedure 1/3/11 - Mayo Clinic - Dr. Schaff


                        Mom to two crazy dogs

                        Comment


                        • #13
                          Re: Myectomy combined with Maze

                          Hi Ad,

                          I had a myectomy, modified MAZE, and Pulmonary Vein Isolation all done at the same time by Dr. Smedira at Cleveland in 2007. I am not sure if my experience is a meaningful comparison, as my experience with AF before myectomy was very limited--just one paroxysmal episode 2 years before. I have had no troubles in the 6 years since.

                          My myectomy obviously was to treat obstruction, not AF. But since I had some history of AF, even not a great one, the thinking was, go ahead and do it while you're in there. (Kind of like replacing the water pump and timing belt, if you have to fix the rear main seal anyway.)

                          I am not familiar with the abbreviation PTSMA. Is that what we call Alcohol Septal Ablation here? A catheter-based treatment that involves dripping alcohol down the left anterior descending artery, to intentionally create a heart attack (MI) scar? If so, I have had that too, a year before my myectomy. I congratulate you on doing your homework, and I strongly agree that that catheter-based treatment is not appropriate for someone in their 40s who is able to have surgery instead. The long-term risk of arrhythmia is still too unknown, as they have only been doing ASA's for a little over 15 years. With your history of AF it sounds as though you are right to be concerned.

                          If the catheter-based procedure you are talking about is Alcohol Septal Ablation, there is one more thing to consider. ASA typically results in right bundle branch block. Myectomy, on the other hand, nearly always results in left bundle branch block. If you have one procedure or the other, this is not a problem, as you still have your remaining bundle branch for conductivity. If you have both procedures in succession, however (as I did after the ASA did not work), you are likely to end up with complete heart block and become pacemaker-dependent, as I have.

                          Good for you with your homework, and good luck!

                          Bruce
                          Diagnosed (w/obstruction) 2003 at 39
                          Alcohol Septal Ablation Feb. 2006
                          Myectomy April 2007 Cleveland
                          Pacemaker dependent (no ICD)
                          Thankful and doing fine

                          Comment


                          • #14
                            Re: Myectomy combined with Maze

                            Yes. PTSMA is an alcohol ablation.

                            Percutaneous (going through the skin)
                            Transluminal (going down a bloodvessel)
                            Septal (where the obstruction is)
                            Myocardial (the kind of tissue they're treating)
                            Ablation (what they're actually doing)

                            Now try to say that really fast

                            I too prefer myectomy over an alcohol ablation if you're healthy enough to take it. University hospital that did my myectomy published an article about them seeing more problems with arrythmias in the alcohol ablation group:

                            http://circheartfailure.ahajournals....62359.full.pdf
                            Last edited by DEChengst; 03-11-2013, 05:18 PM.
                            Some people say I don't have a heart, but my doctor says I have too much?

                            Comment


                            • #15
                              Re: Myectomy combined with Maze

                              From all the replies its clear to see that having two procedures for the price of one is not uncommon. One of several of my reasons to be very cautious with alcohol ablation is the bundle block indeed. Rare change to end up with a block from the morrow (<5% or so) but substantially higher from PTSMA (early years >30%). And indeed, long term effects are not well known yet. As for pacemakers, my surgeon told me they are only now discovering long term heart remodelling after years of pacing, because the muscle stimulation from the pacing is different from the natural stimulus. As for me, as the procedure requires two surgeons I'm still waiting. Meanwhile, sleep apnea (a mild OSAS) has been diagnosed. Aware that OSAS can cause Afib, I checked with both the lung specialist and my cardiologist if they think OSAS could play a part as well. With them both thinking no, and my own reasoning telling me no also, I told them to keep my inline for the OP. Besides, even if OSAS would be relevant, treatment of it wouldn't do anything for the obstruction anyway.

                              Nice to see you fine folks following my story so far. It seems it is an OP one can survive And Laura, I had the same feelings about the RF ablation... I was scared to death for the regular heart cath, which turned out to be a non event, even without any bruises or what. But being present while they perform EFO and ablation... I don't like that at all. Better be asleep and wake up to find yourself like you're run over by an eighteen wheeler. At least that's how I guess I will feel once awake.
                              \"Hope is disappointment postponed\"

                              Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                              Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                              Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                              Meds (current) sotalol, dabigatran, furosemide.

                              Comment

                              Working...
                              X