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Pacemaker/dICD vs ICD

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  • #16
    Re: Pacemaker/dICD vs ICD

    Originally posted by Laoshur
    The reason for waiting two days to implant if they decide I need it after the EP study was simply that the doc wanted to do it the next day, but the surgical lab was not available for a long enough period.

    I am still somewhat puzzled by the relationship between septal thickening and sudden death. As I understand it there are two camps: One would accept my having fainted twice and my family history of sudden heart failure as factors to be considered in whether I should receive an ICD. The other camp says that since my septum is not very thick, I am not a candidate. Is this correct? Does anyone have a reference to a tech paper on the two views and a comparison of their data? (I am a biologist.)

    Also, the doctor told me to go off the beta and calcium channel blockers 48 hours before the EP study. He offered to have me hospitalized for 24 hours before the procedure, but I said I was not afraid, since as recently as April I was running around all over Beijing without them. He just said to watch for severe arrhythmias and come immediately to the ER if they occurred. Was I stupid?

    Thanks for all your help!

    Rhoda
    I understand getting off the meds prior to an EP study, but I thought that 48 hours wasn't sufficient enough time for the body to be med free. I don't have HCM but had an EP study in April and they had me off my meds for a week.

    The idea about septal thickness and sudden death is not clear. See, you can have fatal arrhythmias without having a severely thick septum. Some people with the thickest hearts have much fewer symptoms than people with thinner hearts. There isn't necessarily a correlation there. And you may not know that you're having a severe arrhythmia. You just can't always feel them.

    As far as having the EP study to begin with, most doctors who are very familiar with HCM will agree that a negative EP study isn't very much an indicator of sudden death for the HCM patient. I don't know the mechanics of it, but the results are skewed from that of an EP study on a regular heart.

    The question raised about an EP study, then waiting for the implantation, is that the EP study is done in an EP lab by an electrophysiologist. An ICD is typically implanted in an EP lab by an electrophysiologist. I don't understand the wait when you'll already be there and will already be sedated. Why risk sedation twice when you're where you need to be anyway?

    Does that help answer some of your questions about why we were asking specifics? We're just concerned that you'll undergo more procedures than are necessary. Make sense? Feel free to ask more or comment more if you don't understand. I wish you the best of luck either way you decide to go.

    Oh, and I haven't re-read the entire thread, but are you on both beta blockers and calcium channel blockers? That's a little unusual. Just curious.

    Reenie
    Reenie

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

    Comment


    • #17
      Re: Pacemaker/dICD vs ICD

      Dear Rhoda,

      Um, "watch out for a severe arrhythmia" is not the same as looking out for a severe cough. Ventricular arrhythmias don't really give you a lot of time to go to the doctor about them.

      Also, beta-blockers are best weaned off of because if you stop cold-turkey you risk withdrawal-like symptoms or a rebound effect (you feel worse).

      I'm with Reenie on making an ICD two procedures. No advantage to it I can see.

      As for the septum, yours isn't a risk factor, even if 1.9 is the reading. You and your doctor need to look at the rest of them (use search function here) to make the call.

      all the best,
      S

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      • #18
        Re: Pacemaker/dICD vs ICD

        Sarah,

        I understood that my septal measurement was not a risk factor. What I was asking was whether my understanding was correct that there are two groups of professional opinions - one which says that septal measurements of or over 3 are the only risk factor and another which says that there are other risk factors such as my family history and personal history of fainting which should also be weighed. I understand that most of the people writing here seem to weigh several factors including these, but I also thought I had heard Lisa say that some doctors disagree and weigh only the septal thickness. If this is the case, I would like to see some of the original literature on the subject so I can see why there is such an difference of opinion and hopefully make a better decision myself.

        I guess the reason I am searching here, is that before I came back to the US at the end of April, I had several times when I was not sure I would make it across the street, up the stairs, etc. without fainting as well as the two times I actually fainted. I am not eager to repeat this, but really would prefer not to get an implant if I do not need it. So, which risk factors need to be weighed is personally important to me.

        I hope this clarifies what I am asking and why.

        Rhoda

        Comment


        • #19
          Re: Pacemaker/dICD vs ICD

          Rhoda,
          Maybe what you remember about septal thickness is that a measurement of <1.8 usually means you are not a candidate for myectomy or alcohol ablation. You can have an ICD with lesser septal thicknesses. I have one with a septal thickness of 1.6. Also re: beta blockers and calcium channel blockers. My understanding is that this combination is not that unusual. Calcium channel blockers are often added to beta blockade if beta blockers alone are ineffective. I am on both plus Norpace. I do know it is important to not stop beta blockers cold turkey. They are supposed to be weaned. When I had my EP study, my Norpace was withheld (it is an antiarrhythmic) but I don't remember that the Atenolol or Cardizem were.

          Comment


          • #20
            Re: Pacemaker/dICD vs ICD

            Originally posted by Laoshur
            Sarah,What I was asking was whether my understanding was correct that there are two groups of professional opinions - one which says that septal measurements of or over 3 are the only risk factor and another which says that there are other risk factors such as my family history and personal history of fainting which should also be weighed.
            Rhoda, I think the answer to your question is no. I don't know of any doctor who will say that they only look at the septal measurement when deciding whether or not to place an ICD. Most doctors that I know of will prefer that you have 2-3 of the other risk factors when making that decision. The caveat is that there are some doctors who will place an ICD with a septal thickness of 3+ cm regardless of the absence of other factors. Example: when my husband was at the EP debating whether or not to get his ICD, the EP contacted experts all over the world. My husband's only risk factor was a severely thick septum. At the time his measurement was believed to be 5.2cm. That by itself was significant enough for the implant.

            Reenie
            Reenie

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

            Comment


            • #21
              Re: Pacemaker/dICD vs ICD

              Let me take a stab at this....
              No there are not 2 camps per se... there are a list of risk factors and there are some that factors that are viewed as more significant - for example prior cardiac arrest a rather obvious factor and others are not so clear to some.
              Septal thickness of 3.0 or greater is a risk factor that has been id'ed.
              Family history of Sudden Death is a risk factor and history of arrythmia is a factor as well. Adverse Blood pressure responce is the 5th risk factor.

              NOW for the tricky part.. of all those who die from HCM only 50% have identified risk factors...what does this mean...we need to learn more about how to evaluate risk for HCM...

              Did this help... or just add more ???????????

              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


              • #22
                Re: Pacemaker/dICD vs ICD

                Rhoda,
                My doctor initially recommended one of these for me too. However, I talked with Lisa here and she told me the same thing. They don't usually do those anymore to make that determination. After I learned that I was concerned that the doctors were going to base their decision on that study. They didn't. When I went to the hospital (Fairfax hospital is very good), the doctor told me I had too strong a case for implantation to NOT do it and they might not do the study at all (depending on how the doctor performing the surgery felt). He did it. That was when they calibrated my device to somewhere over 150 bpm (at least that is what they said. I don't know what the other conditions are). Anyway, Lisa was right. They don't really use this study any more for that purpose. In fact I learned that my original heart doctor mainly prescribed the study indicating that I was probably likely to need one of these devices. It turns out they weren't far wrong because the incidents that happened during my Holter monitor exam showed my heart beating at around 139 bpm. Pretty close to 150 bpm. I am a pretty lucky fellow... at least if you count that I'm still here to tell you all of this. My shoulder still hurts. But the surgery wasn't painful. Dr. Sleepytime put me out for the whole thing and boy am I glad. I didn't want to be there for ANY of that.

                Brandon.
                Life is a xerox copy and someone needs to add more toner.

                Comment


                • #23
                  Re: Pacemaker/dICD vs ICD

                  I understand getting off the meds prior to an EP study, but I thought that 48 hours wasn't sufficient enough time for the body to be med free. I don't have HCM but had an EP study in April and they had me off my meds for a week.
                  Maybe it depends on the meds. I was only on beta blockers and the doctor said only 24 hrs (don't take meds the day before the exam which made it more like 36 hrs actually). Of course my implant was almost a foregone conclusion before the study I believe, so maybe the results with respect to implantation didn't matter.
                  Life is a xerox copy and someone needs to add more toner.

                  Comment


                  • #24
                    Re: Pacemaker/dICD vs ICD

                    Originally posted by Sarah
                    Dear Rhoda,

                    I'm with Reenie on making an ICD two procedures. No advantage to it I can see.
                    How often do doctors decide on two procedures vs. one? Mine, fortunately, was one and I think that was no small favor. I would hate to have had to go to the hospital twice to get this done.
                    Life is a xerox copy and someone needs to add more toner.

                    Comment

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