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

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harryandleanne Find out more about harryandleanne
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  • Heartmans Wife
    replied
    We went the ablation route for Alan and it has been about three years and Alan has, in the last 6 months, started to have pain as bad as or worse than before the ablation. He had a stress echo in June and his gradient at rest was 0, but under stress was over 100. He had this done at a hospital away from his pcp or Doctor Maron, so we are now working on getting the results to them.

    Now that I know alot more about both proceedures, I'm really wishing we were on the web-site and had the knowledge to make the choice, rather than just be told that he would have an ablation.

    Live and learn.

    Ange

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  • shirleymahoney
    replied
    I wish i could have had mine done at one of the centers but my insurance company wouldn't pay for it so i asked alot of questions and it helped that Dr. Gilligan reccomended him and according to Dr. Maron he did a fantastic job, my myectomy was a year and a half ago and i'm still kicking

    And believe me i was scared but it was really for no reason, I just put my self in the good Lords hands

    Shirley

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  • Gattaca_1
    replied
    Hey Ronnie would your last sentence also read if i was to have a myectomy i would only go to the 3 top centres?. Things are complicated and even more so when you are in a different country that does not have a large centre. Just for a little background when i asked about myectomy and ablation choices from probably Australias leading HCM expert the answer came back Ablation. The reason he gave wasn't that he thought myectomy wasn't as good if not better. He basically said that the hospital he worked in was excellent at ablation and did a lot of them whilst they didn't have the expertise for myectomy.

    Paul Rogers had a myectomy though in Australia and is very happy with the results now? Maybe contact him for more information. I guess what i'm saying is we all have to be careful suggesting one procedure over another when not everybody has access to the worlds best centres. With only a few myectomies being performed per year in Australia the grey area becomes much larger.

    Leave a comment:


  • Ronnie
    replied
    If it is presented that you do have a decision-it's tough to make! I went to Mayo with the idea I was haing a Myectomy, Dr Nishimura presented both otions, in great detail. Obviously the SAblation was more appealing (lees invasive, short recovery etc) how ever, it was explained that the Myectomy is the proceedure of choice-giving more long term positive results. I did choose to have the Myectomy & the staff @ Mayo congradulated me on my "good choice". I am glad I did it. If I were to have an Ablation, I would ONLY go to the 3 top Centers, not a local Hosp!
    Good Luck with whatever you do

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  • Reenie
    replied
    Please update us when you have some information to share!

    Reenie

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  • harryandleanne
    replied
    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

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  • Lfilzen
    replied
    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.

    Leave a comment:


  • shirleymahoney
    replied
    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

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  • Lfilzen
    replied
    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.

    Leave a comment:


  • harryandleanne
    replied
    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

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  • Daniel X
    replied
    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

    Leave a comment:


  • Eileen2345
    replied
    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

    Leave a comment:


  • Reenie
    replied
    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

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  • Sarah
    replied
    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.

    Leave a comment:


  • mtlieb
    replied
    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

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