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Myectomy vs. Ablation

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  • Myectomy vs. Ablation

    Lisa, et al.

    I've been thinking about this for some time and i guess i finally just got up the nerve to ask. I would appreciate your comments.

    We tend to steer folks away from alcohol ablation because it is a relatively new procedure and the long-term effects are unknown. However, if we are to advance HCM treatment options, should we necessarily be turning our backs on ablation? When you think about it, myectomy is a rather primitive form of treatment isn't it? "Oh yes, Mr. Smith i see that your septum is enlarged so why don't we just cut you open and slice out the extra tissue?" Eeek!

    I guess the same applies to ICD's. It just all seems so turn-of-the-century electro-shock therapy to me. "Oh yes, Mrs. Jones, i see that you are having heart flutters, why don't we just pump you full of juice and see what that does for you?"

    I myself chose myectomy over ablation because of it's long track record of success and i couldn't be happier, but at some point in the future it's just got to be replaced by something else, right? How is this ever going to occur if we are not open to exploring these new technologies?

    Is this the bottom line?: "Yes, we want to explore new HCM treatment options but not with my heart"?

    One thing that does bother me about ablation however, is that since it can be done in a cath lab, it seems like every hospital in the world now is trying to 'get in on the action' and this is definitely NOT in the best interest of HCM'ers for sure.

    Any thoughts on this matter will be greatly appreciated.

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

  • #2
    Jim, I can't answer much of your questions, but I do know that ablation can pose problems when it encounters pockets of HCM "scar" tissue. The alcohol can sometimes spread farther than intended or not infiltrate far enough to take care of the problem. I hope this helps.

    Reenie
    Reenie

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

    Comment


    • #3
      Dearest Jim,

      I always appreciate a good stir of the pot.
      You’ve already sited some of the more prevalent reasons against the Ablation. No long term track record is a significant reason against because we truly do not know what having an artificially induced mass of scar tissue in the middle of your heart can do 10,15, or 20 years down the road.
      And we know that way too many doctors who know how to swing a cath tube “think” they know how to do an ablation.
      If you have to get an ablation, please get someone who has done many, many procedures and personally, if I had gone that way, I would have gotten my butt to Charleston.
      I believe that there are enough HOCM patients above 50 (or patients below 50 who psychologically can’t handle the idea of open heart) to allow the cardiology community to enhance this procedure.
      What I object to is too many cardiologists who think this procedure is the holy grail of HCM, and do not give their patients a fair accounting of their treatment options. My former cardiologist (now, twice removed) made the myectomy sound like a used Ford Grenada compared to the Audi Ablation. Fortunately, Mrs. Levitt didn’t raise no fool.
      Had you been at last year’s annual meeting (hanging out at the Cleveland Clinic is no excuse…I mean your Doctor was there), you would have learned the main difference in the two procedures is VISUAL. With a myectomy, the surgeon can actually see what they’re doing and removing. No matter how skilled you are with a catheter and all the imaging equipment they’re using, you really do not know ‘exactly’ what those little drips of alcohol will do. And if you are inexperienced with the ablation procedure, you can miss a seal and send that alcohol somewhere you didn’t mean for it to go.
      The fact that you are relying on imaging equipment and not your eyes is the main reason why 15% of ablations require a pacemaker. “Oh, I did not mean to destroy that electrical conduit”.
      I can for see a day when the imaging equipment gets much better with more detail, and the catheter equipment gets more precise. But in the meantime, we have a procedure that has a higher rate of recovery, a lower need for pacemakers, and a long track record.
      Two more points.
      1- There is strong anecdotal evidence that the ablation can have some negative consequences, especially between 1-2 years post procedure. There seems to be a need for either additional procedures, or possibly a follow up Myectomy. Soon, this anecdotal evidence can be turned into scientific data if Ms. Salsberg has anything to do with it.
      2- I believe that this organization must try to provide a balance with the realty of HCM treatment that is available in this country/world. There are doctors out there who are suggesting ablations to 14 year olds. There are doctors who don’t even tell there patients about the surgical options. If the HCMA is too anti-ablation its only because the Cardiology Community is to open to the ablation as a treatment option. The ablation is now 10 years old. Its time for it to lose the bloom of the new treatment on the block and be replaced by a healthy dose of skepticism.

      Oh jeez, my last few posts have a certain Burton like quality. Therefore, that is all.
      Fx

      Comment


      • #4
        What a great topic for discussion at this year's annual meeting!!
        Thanks, Tim
        Forum Administrator

        Comment


        • #5
          Gee – all my posts have a certain ‘Burton’ quality. (I wonder what it could be.)

          Hey Jim,
          Look at the bigger picture. Everybody wants a highly trained skilled and experienced surgeon – but I have yet to find a surgeon who was born with the experience. Everybody wants the newest and brightest treatment – but it must be fully explored and documented first – with years of experience and voluminous use to back up the statistics.

          As far as Doctor’s go, we have worked out a fairly good training method, first learning, then observing, then assisting, then doing under a specialist’s control - - and then comes the day when they first fly on their own, and eventually we hope comes the day when they train their replacements. Only problem is – we live in a dynamic world with new things popping up all the time. Where do we get the experience with the new things?

          The problem comes more into focus with drugs. The pharmaceutical companies test and find new drugs – then pioneer there use. They then do the testing and submit the results to the government for permission to market it. They balance the profit hoped for from the new drug with the possible costs involved with a failure, so hopefully the testing is as thorough as possible. However, with some drugs all the testing not withstanding, once in mass use on occasion the drug fails in ways possibly unforeseeable. Lot’s of people get hurt, but what can you do? Lot’s of people would get hurt without the drug too.

          I think it works out to what the patient ultimately wants. With my first angioplasty / heart cath - back in 1985 when the procedure was only five years old, and stents were not yet invented (and medicine coated stents came after that) I was faced with the choice of heart cath or open heart. I chose the angioplasty. The doctor asked if he could bring in another doctor to observe, and I said OK, providing this doctor only observed – no assisting – and no secondary surgeon fees. (The insurance would not pay for a secondary surgeon.)

          I was willing to do my part in the training of another cath doctor, but I was paying for the hands of the expert and I didn’t want an amateur poking around my heart learning their business. I figured that should be done on people willing or needing the reduced price of the procedure in return for the learning experience of the performer – under the guidance of the teacher. Turned out this trainee wanted ¾ of the price of the surgeon to observe and learn only. She dunned me for three months until I filed a formal complaint with the specialist who was training her and the hospital where the procedure was performed. I got a written apology from the specialist who was unaware of her trying to get paid for learning - - and no more bills. (Can you imagine the nerve?)

          Anyway, I guess we just have to muddle through with the world as we know it. Someday there will be reliable stats on ablations in so far as unfortunate occurrences and long term effects of the procedure. Right now there are those that are willing to add to that learning curve – either by choice or by the misunderstanding of the situation and choices they face. My concern is with the number of doctors who are touting ablation now, before we have a clear understanding of the consequences. (Newer, bigger, better, faster, first one over the cliff.)
          Burt

          Comment


          • #6
            Jim,

            I can tell you honestly that I do not oppose alcohol septal ablation - ASA -as a treatment option in general - I DO however find that the ACC/ESC Consensus document on the treatment and mgt of HCM has its role clearly defined and that should be followed.

            ASA has a role and it is an important role as an option - it is NOT the gold standard treatment and has been over utilized in the past several years.

            How do we learn about treatments - first we do no harm. Those who are over the age of 55+ have 20 years+ to live with the effects of the new treatment and thus we can learn. Those who are 20 have over 50 years to live with this heart that would have the same scar as a person who had suffered an MI - is it not more prudent to allow this person to live as long as possible without such a risky procedure when we know there are options that allow for long and healthy lives?

            The ACC document states clearly the role for ASA and I believe it is clearly and factually drawn out. The biggest 'problem with the use of this procedure is that it is being done by centers and people who do not understand the complete disease.

            As a matter of fact at the ACC Conf. in Orlando this month - when asked how Dr. Spencer chooses a patient for this procedure he replied "I answer the phone". Is this the way a patient should be evaluated? He further stated that if a patient traveled from far away he would not attempt to maximize medical therapy - but if they were in driving distance he may try more meds? I was shocked to learn that the mode of transportation to a center dictated ones treatment options.

            As of March 2005 what do we know about this procedure - it works in some and the long term outcome is still unclear. Caution is still advised as we only have 9 years of data and only a hand full of people with a 5 year follow up.

            Best wishes,
            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


            • #7
              All very good points of view and questions!

              I am only 2 months from my Ablation. I feel great, and continue to be amazed (daily) at things I can now do and endure.

              I chose the ablation for many reasons. Foremost I did do it with a specialist team in HCM. I would have not gone to a doctor who thinks they can.

              I was ready to accept a pacemaker if needed, and it turns out they did a fine job, and I won't need one.

              I was urged to go with the Myectomy, as it was the gold standard. When we listed all the pro's, con's, and personal issues for my situation, we agreed I would go with the ablation.

              I'm ready for a Myectomy if the Ablation fails in the future. For today, it was the best choice for me.


              Again only done because the whole team were HCM specialists.

              Comment


              • #8
                Hi Lisa,
                Well my dear, you have finally said something that really surprised me. It was your remarks about Dr. Spencer – and the fact that it took place in Orlando, Florida had nothing to do with it.

                If you count the doctors who are currently treating me (excluding the ones who I no longer see regularly) the number reaches the two digit mark. Initially I thought the problem encountered was a function of the poor quality of medical care available in Nevada, but have since discovered it is becoming pervasive throughout the medical profession. Indeed, it is seen almost everywhere you look, but in a profession like medicine it is most appalling to encounter.

                Dr. Spencer is an exceptional person. I say this not because of his medical practices but because of his honesty. This ‘To **** with it’ attitude is encountered everywhere you look. Nobody seems to take pride in a job well done anymore, and management doesn’t seem to require excellence from their personnel any longer either. I remember a time when a job not done to the Nth degree would keep a worker up all night – and be corrected first thing early the next morning – often before the normal work day began. Today, good enough is just about good enough.

                I remember being appalled by a friend who was a doctor that ran a ‘Medicare Mill’. His explanation was that to earn a decent living with Medicare patients you had to see loads of them, so he would ‘process them through in a minute or two’. He claimed he did this to save the time for patients who needed it most – but these people had higher and higher hurdles to clear, and ultimately nobody qualified for this ‘extra’ time. His bottom line explanation / excuse was ‘at least they got to see a doctor’ – but did they?

                Drug companies now run adds sending people to their doctors demanding medications which they do not need. The profit motive drives doctors to expedience over care, and it is becoming harder and harder to find a doctor with a set of the quality standards which were taken for granted not all that long ago.

                Is it that education and research over the internet have made us more aware of what we need medically, or has the quality of care taken a nosedive? In the old days it was common for doctors to go to your home if you were sick. Today it is common to call and hear, ‘We can squeeze you in for an appointment in a week or so.’ Doctors claim they no longer come to your home because of the medical equipment that’s needed today – but isn’t that equipment usually in a hospital or lab and not in the doctor’s office?

                With it all life expectancy is increasing so we must be doing something right, - but I believe it is because of the better educated consumer more then anything else – and doctors are just beginning to realize that.
                Burt

                Comment


                • #9
                  Thanks for the replies.

                  Lisa and Felix, of course you realize i'd already researched this issue pretty thoroughly with regard to my own care before i even posed the questions above, so your responses are not at all unexpected or new information for me. However, we do have a significant number of new folks around here lately, and methinks a good stir of the pot is in order.

                  Like yourselves, what i find highly disturbing is the number of hospitals performing alcohol ablations now simply because they can, without regard for the entire picture. Hey, it can be done in any cath lab, it looks attractive to the prospective patient because it's less invasive, and it's a great new way for hospitals to boost profit margins.

                  On the other hand (and you knew it was coming), there wasn't any long-term data on myectomy either when they first started performing the procedure. I feel that it is imperative we remain supportive of new treatment options, but at the same time we can't just throw everyone into an ablation just because it's the 'new' thing to do.

                  I found an interesting article in the AHA journal which i'll reference below. It reiterates much of what we've already said, most importantly that alcohol ablation is recommended only for those people who are not a candidate for myectomy due to other factors such as age, infirmity, etc. which would pose a higher risk of complications from surgery.

                  http://circ.ahajournals.org/cgi/cont...ll/106/11/1312

                  Myectomy as the 'gold standard' of treatment has just got to be replaced by something else down the road. I just don't see us still doing them 100 years from now. Whether it be alcohol ablation or other new technologies we haven't begun to explore yet, who knows? I just think it's important that we remain open to new ideas and treatment options.

                  Let's hear some thoughts from others here on the board. Anyone?

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

                  Comment


                  • #10
                    Jim

                    I hope a 100 years from now there is nomore HCM, who knows by then a pill may fix us, but like everyone knows i lost my neice a year ago and i really believe it has something to do with the Ablation and i don't think the proper test were performed before she had it done and with her not knowing much about the disease she trusted her doctor and he let her entire family down including her 4 children, they are going to grow up without knowing what a great person she was, i think doctors perform this should know all the in's and outs of the heart before doing it, see Sandy had mitral valve prolapse when she was 15 years old and I think this Doctor thought it would be an easy fix being she lived in Okla and he was in Texas

                    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


                    • #11
                      Hey Jim, don't know if you've seen or heard about it yet. But, they have just done their first laproscopic mitral valve replacement. This could be the next minamally invasive technique to come along. I also agree that we have to advance the techniques to the best that technology will allow. But, it must also be well monitored.


                      Mary S.

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