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Decisions, Decisions

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felixdacat Find out more about felixdacat
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  • Decisions, Decisions

    Lets see…presently the guy who does Ablations wants to do an ablations on me. The guy who does myectomys, wants to do a myectomy on me. Ain’t cardiologists grand?

    My cardiologist, in all her wisdom, and despite my request to forward my records to Dr. Nishamura at the Mayo, instead sent them directly to a surgeon. Who of course wants to open me up. Thus I am once again denied an unbiased opinion.

    Now, according to the surgeon, since I have a mean gradiant of 61mm, and because I’m only 45, he feels this is the best option. He says I may get some relief from medications.

    I am scheduled for a full day of testing at NEMC which is mid December. However, if they start talking about myectomy, then it all gets pushed into 2004. So the advantage of the Mayo, is that I can get the surgery done in December.

    Another advantage to the Mayo, is that they have a much longer track record with this surgery. It appears that NEMC just started to specialize in it. It may even be possible that my local hospital has performed this surgery more times.

    The only advantage that getting the surgery at NEMC, is that in Boston, I’m surrounded by many friends and family. This would be much easier on my wife. I do not know a soul in Minneapolis.

    Of course, I may get the suggestion that I continue drugs for a while. Since increasing my dose of Toprol to 75mg’s, I have felt better, although not perfect. Yesterday, just moving my son’s new bed from the basement to the second floor, knocked the stuffing out of me. This was at 2PM, and I didn’t feel any energy the rest of the day.

    Well that’s my story. Any advice r suggestions would be appreciated.
    Fx

  • #2
    Re: Decisions, Decisions

    Here is my opinion, being someone who is in a similar situation to you..

    I am 39, have a 2 year old son, and had a gradient somewhere around 80 - 100 mm with severe mitral regurg. I also have symptomatic arrythmias and had an ICD implanted last year, partially so that I could use the pacemaker to combat the drug induced bradycardia and take heavier doses of beta blockers. When my atenolol was increased from 50 mg./day to 125 per day, my gradient went down to somewhere below 40 mm. and my regurg went down to mild to non-existent.

    Now. except for the arrythmias which still concern me, I am not really bothered so much by symptoms, i.e. SOB and angina, which I was having much more before. I basically feel that my symptoms are tolerable (except for the arrythmias, which do still cause pre-syncope occasionally) I have not yet tried any anti arrythmics, such as Norpace, but I may if the arrythmias continue to worsen. Anyway, I have discussed the possibility of myectomy or ablation with my doc, who says the following:

    You will never have a normal heart. These procedures are not perfect, have their own problems, and you will still need treatment. You may be trading one problem for another.

    In my case, I had a benign brain tumor removed a couple of years ago, so my feeling was that if I could survive brain surgery, I could survive anything. My doctor said to forget it for now. Since I was responding well to meds, I should just live my life.

    So here is my advice.....exhaust all medical treatments (i.e. medicine) before you undergo any procedure. Analyze how you feel after that. Is your quality of life seriously impaired, or is it just a small inconvenience? Keep in mind, that barring the discovery of a complete cure (which we can always hope for!), you will not be "fixed" and you will still require follow up and treatment. Then, if you can't live as you are, try surgery or ablation, after reviewing both alternatives and studying the plusses and minuses carefully.

    That's my 2 cents. Good luck with what you decide, but I would try to get an OBJECTIVE opinion, and if that is not possible, get several, and do the best two out of three.
    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.

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    • #3
      Re: Decisions, Decisions

      dear ftc,

      get the records sent to Nishimura's gang at Mayo. I'm not clear if you've been seen by them or not from your post. When I went, I didn't get to see him, but he picked out the doctors I saw (not a surgeon among them) and got the best care i've ever had in my life.

      it is a big decision, but if you had the surgery at mayo, you would only be there for a few days right after right? i mean, most of your recovery period would be done at home anyway.

      but i agree that you need to take all the time you need and KNOW you are making the right decision at the right time. but without putting it off b/c you don't want to have it done. hard line to tow, but you can pull it off with good medical and family advice and support.

      take care,

      s

      ps to be fair, i know a couple of the NEMC guys and they are great doctors, and nice guys, too, (i don't know the surgeon). However, it isn't as important as how long the center has been doing myectomies (heck the whole HCM clinic there is new, but the actual surgeon's experience. who do they have and what is his experience? cause I'm with you, when comes to a knife in the heart --i'm going with someone who has done it a million times.

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      • #4
        Re: Decisions, Decisions

        Two great centers - two good surgeons -

        Based on data I heard at AHA - I would not be looking forward to an ablation at this point. Surgury is still the gold standard and with good cause. The infarct created with the ablation leaves tissue that can cause problems down the road - myectomy has a 40+ yr history of no adverse reactions post procedure. Ablations appear to have a high rate of ICD's with appropriate discharges post procedure (about 7% of those implanted). This is a HIGH number.

        You are young - I would seek the opinions of either center and I truly feel you are in great hands either way.

        By the way - YOUR CELL is always on VOICE MAIL I have tried to call you but can not get you - I will try again in the morning.

        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)

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        • #5
          Re: Decisions, Decisions

          Lisa...read my personnal message
          Fx

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