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A few questions on treatment strategy

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  • A few questions on treatment strategy

    I thought that maybe a new post might make sense as I was writing a reply to an earlier one:

    Originally posted by Sarah
    you should also see a specialist; see our links page for more info on the heart centers and read the archived posts or ask or call Lisa for more. referrals are done over the phone; not on the board.

    ps how are you feeling?
    Yes, I am planning to see a specialist. Have an appt with Dr Wang next month and I have read here that he is very good but I am not sure if can avoid a visit to Cleveland or Mayo. At my second visit to the cardiologist for the stress test my resting gradient was well above 100 and they could not get a reading for the under-stress gradient. I am not very sympomatic, as in I did not have think there were any issues with my heart before I got diagnosed during a flu checkup. Am on 50 mg Toprol and it works fine (my heart rate stays between 60 and 70) except for the blurry vision and a massive headache today.

    My current card has been trying to figure out if I need an ICD. My cousin died a few months ago at 45 from a heart attack while playing so its probably related to HOCM though we are not sure yet. His cousin also died young, as did a third degree cousin. Doc is not sure if it counts as family history as they are looking for first degree relatives. Septum is 25 mm so that is not a factor yet. Blood pressure rose a little (it did not fall) during the stress test. Have not had syncope but have been feeling dizzy every once in a while after the diagnosis - don't know if its psychosomatic or more alertness to symptoms. Gradient is pretty high and I have seen that referred to in only a couple of papers as a factor in risk of SCD. He wants me to do a T-wave Alternans test next week, seems like a precursor to EPS though it looks like my insurance does not pay for T-wave. So, I have to check back with the doc on that one. But from some of the studies I have seen, T-wave has about the same predictability of SCD as EPS and its non-invasive.

    I know its difficult to refer someone over the net but I am looking at the various factors that would be considered in choosing one. I know Cleveland and Mayo are the two big ones and might be the ideal choice given the gradient. Any other places that might be considered? Richmond has a specialist. My doc has a connection to MUSC so he knows docs there and talked to someone there about my case last week and they had suggested the T-wave. I know they tend to 'lean' towards ablation but I am only 31. Cleveland has a direct flight from Raleigh (Continental) so thats a plus there and I have seen pretty good reviews about the treatment there.

    OK, now for the questions - I would appreciate any opinions since I am looking for different points of view:

    1) Should I try the standard medication (beta blocker & gradient reducer)route with the docs here in Raleigh before taking a flight to Cleveland or Mayo for an opinion there?

    2) Is there a waitng period for appts at the big centres? i.e. does it take months to get an appt?

    3) Any thoughts on ICD decision? Anyone taken the T-wave test?

    4) Doc has not yet prescribed a gradient reducer - that worries me a bit.

    5) There is that paper by Dr Maron about likelyhood of worsening of symptoms for folks with restin gradient > 30. Has anybody heard of myectomy performed purely on the basis of the gradient. My understanding is that they don't surgery unless the symptoms are pretty bad. Would it not be better to do a surgery earlier in life when you are physically healthier and when the damage to the mitral valve is minimal? Ofcourse, you might be giving up the chance that medication might work without the need for surgery.

    I guess I will have more questions as we go along.

    Thanks.

  • #2
    Re: A few questions on treatment strategy

    Hi,

    I can only speak from my own experience, but...

    I don't know that there is a specific group of drugs labeled as 'gradient reducers'. As far as i know, that's one of the roles that beta blockers serve by relaxing the heart. My pre-medicated gradient was 100mm at rest, but since being on a good beta-blocker for about 6 months now it has dropped to between 27mm and 53mm. (There are fluctuations in your gradient measurements on different echocardiograms. Mine is usually high if i've just eaten, for instance.)

    As far as the Maron article, i've spoken directly to Dr. Maron on this one because it scared the crap out of me. The risks he refers to in the article pertain to persons whose gradient remains above 30mm either because they have not received treatment or because treatment was ineffective for them and their gradient remained high. In my case, for instance, once we get my obstruction under control with the beta-blockers and my gradient falls below the 30mm threshold, the risk factors no longer apply to me.

    Oh, and for what it's worth, i had an appointment at the Tufts-NEMC HCM clinic less than two weeks after i cold-called them. I think especially since i was symptomatic and had not yet received any treatment, they tried to get me in as soon as they could.

    Hope i was of some help

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

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    • #3
      Re: A few questions on treatment strategy

      Answers (mostly in order):
      Norpace (disopyramide phosophate) is the medication that reduces gradient. It is usually started while you are in the hospital.

      They are pretty good about getting you in. I, like Jim, called a center (Mayo) and was up there in only a couple weeks. For some it can be even sooner.

      ICD insertion is based on risk factors. If you don't have them, then there is no need. You mention a few risk factors, so it sounds like you are aware of this. I've never even heard of this t-wave test and I've not seen it talked about here at all. I'm now very curious.

      It sounds to me like your case is complicated ---possible risk factors and several sudden deaths, gradient, etc. There is NO reason to futz around with the local guys when you have important treatment decisions that need to be made and they need to be made sooner rather than later.

      The latest Consumer Reports or US News (I can't remember which one) just rated the best hospitals and Cleveland and Mayo are 1 and 2. If Cleveland is easy for you to get to, then there is no reason not to go NOW.

      If you have insurance concerns, simply call 'em up and talk to their billing department. They can walk you through it.

      I spoke to someone the other day who didn't know that health insurance usually has an "out-of-pocket cap" so that no matter what your actual medical costs were, you will never pay more than that amount in one year. This is usually 2 or 3 thousand. The year I racked up over $70,000 in bills, I only paid $2,000. Everyone should know what their out-of-pocket cap is.

      Walk quickly (as in don't run), don't walk to the nearest major heart center.

      take care,

      sarah

      Comment


      • #4
        Re: A few questions on treatment strategy

        Your questions are rather detailed and it would be easier if you give me a call in the office and we can go over these questions.

        Thanks!
        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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