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Dawn Find out more about Dawn
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  • questions about EP studies and defibrillators

    I am scheduled to have an electropysiology study done on Wed. I am becoming quite apprehensive about it all. The risks of the test and the fear it is throwing at me is enough to make me reconsider if i want to do it. I want to know as much about my condition as possible, but i don't want to risk my life doing it. I know my dr. wouldn't recommend if he considered it a great risk, but i am still scared.

    I am wanting to hear from people who have had this done and how it went for them. Is this a common procedure for HCM? Have devices proved to be helpful for HCM?

    At times i wonder if i am making a bigger deal out of this than it really is. I wonder if it is really necessary. I have not had any arrythmias the two times that i wore a Holter monitor. I am not feeling too brave, and wish it would all disappear.

    Thanks for talking to me! Dawn

  • #2
    Re: questions about EP studies and defibrillators

    Dear Dawn,

    First, you can use the search function (the link is above, next the FAQ link in red) to find all the posts about electrophysiology studies. Search for the entire term and the abbreviation to get them all.

    Second, my personal experience was that when I was first told they wanted to do an EPS (7 years ago), NO WAY. Howevver, my husband (working from fear and being a doctor's son) talked me into it. They didn't find anything, as I suspected they wouldn't, and I'm still here to tell the tale. The did it properly and I have no memory of the procedure, except of the mild burns on my chest afterwards. I've had one or two doctors since suggest another one, but none have been HCM specialists (including the first one). I will never have one again unless it somehow becomes magically the key to saving my life (unlikely in the extreme).

    Third, EPSs have _not_ been found to be very useful for HCMers. Unless you are getting an ICD or an ablation, it is unlikely to be useful in anyway. The risk of death from the procedure itself is about 1-2% depending on where it is done (clinics that do them more often have lower rates).

    My personal feeling is that doctors do this to cover their butt and becauase they have been done for a long time and it is so fun to go and poke at someone's heart to see if it can be "turned off" and then "turned on" again.

    See, if you are at risk for sudden death, you don't need your heart induced into it to figure it out. It should be clear from your risk factors (or lack thereof) whether you need an ICD. And if you DO need an ICD, then you don't need an EPS to confrim it and it would only put you at risk for not surviving the experiment.

    Like with ANY other medical procedure, if you don't want it, you don't have to have it. "No" is a magic word.

    take care,

    Sarah

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    • #3
      Re: questions about EP studies and defibrillators

      WHY did the doctor recommend the EP test? If it is to detirmine your risk of SD then it is not something routinely done anymore. A possitive EP test can not prove added risk and a negitive test can not prove that you are free of risk.
      ASK WHY??? before the test. I am sure you have a good doctor, I am sure he is doing what he thinks is right. About 4-5 years ago now EP was found to have no impact on defining the risks of SD in those with HCM. He may be thinking of older data...and maybe not, there maybe something else going on that he is concerned about.

      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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      • #4
        Re: questions about EP studies and defibrillators

        Thanks, Sara and Lisa, for your responses. I have pretty much decided that i do not want to do it. He suggested this as "if you want to do everything possible as a protection, i suggest having a defibrillator implanted." I am having trouble understanding b/c at the same time he was saying he considers me to be between low and high risk. I have had no episodes of passing out, at least not totally, and so i am not sure why i should take more drastic measures if i can live ok w/ the way it is now. I certainly don't want to do it just to "cover his butt" which was something i asked him about earlier. I do not want a device unless i KNOW that it will improve the quality of my life. RIght now it all seems to be in the shadows.

        What do you have to say about pregnancy and HCM? I am getting married in March and my fiance is concerned about my health. I am not planning on it any time soon but want to know how others have experienced it and whether it is a wise idea.

        still beating,
        Dawn

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        • #5
          Re: questions about EP studies and defibrillators

          Dawn, a device will not improve your quality of life. It's more like an insurance policy or ER implanted in your chest. As far as pregnancy goes, do a search on here. There is a lot of info on it.

          Reenie
          Reenie

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

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          • #6
            Re: questions about EP studies and defibrillators

            dawn,

            as reenie pointed out, there is a ton of stuff in here on pregnancy, you only have to use the search function, or browse topic headings, to find them (sometimes questions come up in threads that started about different things, so the search function is more comprehensive).

            second of all, if this guy can't tell you what your risk factors are and can't seem to evaluate you properly for an ICD, then you need to get a second opinion ASAP. Please look into seeing a specialist.

            take care,

            seb

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