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If you had a choice...myectomy or ablation?

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  • If you had a choice...myectomy or ablation?

    I know the pros and cons for both of these procedures, just looking for opinions? Harry's time is drawing near and we are hoping we won't have a choice but circumstances will dictate what prcedure he will have.

    Of late I've heard better outcomes for ablation.....any takers?

    Harry and Leanne

  • #2
    Opinion

    Every case is different - I did not even consider Ablation - In saying that, my situation is not suited to an ablation even if i wanted one

    In my opinion and given the research out there, the myectomy seems to have proven itself over time.

    Comment


    • #3
      Harry & Leanne,

      I think Dr. Lever would have a serious problem with your last sentence (as would the Marons, and Dr. Nishamura, etc).
      Looking at your picture, my guess would be that Harry is under 50. In that case, with everything else being equal, then the Myectomy would be considered the best procedure to have.
      Both procedures have a high percentage of success. The Myectomy is higher.
      The Myectomy has a much, much longer track record. This gives you much better insight to what life would be like 20-30 years down the road. The Ablation has only been done in significant numbers for 5 years. No one can say what life will be like 20 years from now with a clump of scar tissue in the middle of your heart.
      The ablation has a 15% chance of a need for a permanent pacemaker implanted. With a Myectomy, that need is very rare, especially with an experienced surgeon.
      The clear advantage of an Ablation is 2-4 days in the hospital and a 2-3 week recovery as opposed to 5-9 days in the hospital and 6-8 week recovery. Oh, and no scar (except in the middle of your heart).
      To me, a couple of extra weeks of recovery are nothing compared to the years of confidence you gain knowing you had the best procedure for the long term.
      Also, there is strong anecdotal evidence that for a solid percentage of Ablation patients, problems arise between 1-2 years post ablation. Among these problems is a return of symptoms, a worsening of symptoms, or a need for either a second ablation or a myectomy.
      Please go through these boards and this website for a true understanding of the decision you have.
      Everyone needs to make their own decision, but it should be an informed decision. The problem with HCM is that in many circumstances, your cardiologist is not informed enough to help you. That is why so many of us at this site suggest going to one of the big 3 HCM centers (which can be tough when you’re in Australia). The advantage to the big 3 is that they do all the treatments (as well as they’re being experts) and can give you an unbiased opinion of what would be best.
      As for my own decision, even knowing everything I know about the advantages of the Myectomy, had I been single, with nobody relying on me, I probably would have opted for the ablation. But with two small children who I wanted to help raise, I took the best option for me having a long, involved life.
      Fx

      Comment


      • #4
        Well with having problems with a family member receiving the Ablation i prefer the myectomy it has been around alot longer more proven

        Shirley

        P.S Good Luck in whatever you decide
        Diagnosed 2003
        Myectomy 2-23-2004
        Husband: Ken
        Son: John diagnosed 2004
        Daughter: Janet (free of HCM)

        Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

        Comment


        • #5
          I was very happy to have been able to have the myectomy. I knew alot about both procedures and at age 50 it was a good choice for me.

          Pam
          Dx @ 47 with HOCM & HF:11/00
          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
          Lead failure,replaced 12/06.
          SF lead recall:07,extracted leads and new device 2012
          [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
          Genetic mutation 4/09, mother(d), brother, son, gene+
          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

          Comment


          • #6
            As of right now: Myectomy

            However, that might very well change in the not-so-distant future. I just don't see myectomy as being the procedure of choice for much longer. It's much too invasive for the level of technology we currently possess, and I believe we can do better.

            Jim
            "Some days you're the dog... some days you're the hydrant."

            Comment


            • #7
              There are disctinct guidelines for who is a good candidate for either procedure and that has to take precedent over any polling results.

              As noted above, your age, your septal measurements, your overall health, as well as the condition of your heart are all factors. Not the least of which is also WHO is doing the procedure.

              Having worked with Lisa at a couple medical conventions, it seemed pretty clear to me that many local hospitals are saying "hey, we have a cath lab, we can do ablations! hooray!" without having a clue as to how complicated and dangerous they really are.

              Regardless of which procedure you go with, try to have it done by someone who could do it in the dark, blindfolded, with one hand tied behind their back. (ok, maybe not the last one!)

              There are advantages and disadvantages to each procedure and I recommend using the board's Search function (link is up top) to find previous posts/threads on both as this is a very widely discussed topic and more than one thread in depth.

              Comment


              • #8
                I understand that some people have no choice at all and have to go with one method or the other. That said, if I had a choice, I would choose myectomy. I know that it's more invasive and takes longer to recover from, but you rarely have the unexpected side effects that an ablation might have. With an ablation there is the possibility of the alcohol not penetrating far enough where they want it or for it to spread too far and cause more scar tissue than needed. There is the higher risk of dependency on a pacemaker after the procedure. And lastly, there is a higher incidence of needing to do the procedure more than once to get the desired long-term results. These are facts, but they are also my opinions. Honestly, I feel if you see someone who knows HCM very well and understands both procedures thoroughly, I'm not sure that he will really give you a lot of choice. Rather, he will probably steer you toward the procedure that is best for YOU.

                Reenie
                Reenie

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

                Comment


                • #9
                  Without hesitation -- Myectomy.

                  Harry can handle a myectomy surgery and recover. He is young and strong.

                  I wish you the best with your decision.

                  Hugs,
                  Eve
                  49 yrs. old
                  Diagnosed at 31.
                  Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
                  First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
                  Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
                  Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
                  My brother passed away suddenly at 34 yrs old from HCM.
                  2 teenage children, ages 17 and 15.

                  Comment


                  • #10
                    Hey-

                    My doctor suggested a myectomy----we did discuss the ablation-- but he told me that that is a more experimental thing that is reserved for special cases. To me, being 17/18 at the time it was a no brainer---GO with the one that you know works for the long-term and is safe, effective, experienced, ect. Of course the operation is absolutely terrible, but once it is over it is merely a memory. I went through it and I feel great. I play basketball, jog, go up staris easily, and basically whatever else I want to do. That is just my story. I hope it helps.

                    goodluck

                    Comment


                    • #11
                      Thanks everyone for your thoughtful and thought provoking opinions. Harry will be very pleased to know you all think he's under 50 lol. He turns 55 in August.

                      The decision may be taken out of our hands anyway, depending on the angiogram. Ablation may not be an option. The cardiologist said he will be having a pacemker implanted either way (he's had 2 defibs in before but his chest is muscular and they "popped out" ), the pacemaker is going to be implanted deeper .

                      I have spent hours reading this board and doing research and what I was after is what I got, opinion......opinion varies on one's own experience usually, but yes, there are statistics as well......just trying to make a "big picture" here.

                      Eve I was so happy to hear of your outcome, I was and am very interested to hear of your experience.

                      All the best everyone

                      Leanne and Harry

                      Comment


                      • #12
                        I would highly recommend ablation. Ablation was first discussed in the early 1990's in Europe and has been done since 1995, not for just five years as stated on this site. I had mine done in the year 2000 and already, over 200 had been done in the US at that time (I was #206.) Also, the literature I've read suggests the need for a permanent pacemaker is now less than 10% following alcohol ablation.

                        There are several articles that suggest ablation may be the new "gold standard" for HOCM. You can read summaries of journal articles on the Internet by doing a search for "septal alcohol ablation new gold standard"

                        The Journal of American Cardiology November 16, 2004 Volume 44 Issue 10 lists articles that compare both myecotomy and ablation. You need to purchase the full text, but summaries are free.

                        My cardiologist told me I could always consider a myectomy if the ablation was not successful. It only made sense to me to consider a less invasive procedure first. I took her suggestion and was very happy with my decision. I was 44 years old at the time and in excellent health overall. My quality of life has improved 100% since my procedure. I now exercise without an elephant on my chest!

                        The boy following me in the lab had had a myectomy done a number of years previously. Symptoms had returned and he was now going the ablation route. I'm not suggesting this is the norm, but in my case I know this to be a reality because I met him and his family.

                        Good luck with your decision.
                        Laurie

                        Comment


                        • #13
                          Well i happen to think there are few things to work out concerning the Ablation, I 'm very happy yours turned out so well, but my neice died a year and a half ago and it may have had something to do with the doc that performed it, it was done in Houston Tx her entire heart enlarged and she was dead a year later and i had a myectomy a year and a half ago and i'm still kicking, just because it was in Europe in the early 90's does not mean it has all the bugs worked out, they don't know why people die when others survive from having the same procedure all i know one of the top Dr.'s did she procedure and when it failed he released her and said there was nothing they could do for her, personally i blame the doctor

                          Shirley
                          Diagnosed 2003
                          Myectomy 2-23-2004
                          Husband: Ken
                          Son: John diagnosed 2004
                          Daughter: Janet (free of HCM)

                          Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                          Comment


                          • #14
                            I'm so sorry about your neice. I think we all have heard of someone who has died following ablation or myectomy. There are no guarantees in life, are there? Doctors aren't God and our days are all numbered. I feel very fortunate to be doing so well. That's one good thing about a heart condition. It made me realize just how precious life is. Good luck with your decision.
                            Laurie

                            Comment


                            • #15
                              Hi all

                              Harry had his angiogram on Wednesday and he is fine, was a little sore afterwards. Has anyone else had 3 catheters in for an angio. He had 2 lines in one side of groin and one in the other. His cardiologist said he wanted both sides of the heart checked, sounds like they are covering all bases. No results as yet. I'm excited :d

                              Leanne and Harry

                              Comment

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