If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

The use of EP study in those with HCM.

Collapse

About the Author

Collapse

Reenie Find out more about Reenie
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • The use of EP study in those with HCM.

    I promised to get this information to you who would like to know:

    Dr Stephen Winters was asked to detail the usefulness of EP studies in those with HCM. He said that there is "little to no usefulness at all in an EP study to determine sudden cardiac death in patients who haved HCM." The best practice to determine whether or not a patient with HCM needs an ICD placed it to discuss your personal risk factors with your specialist. An EP study may result in patients getting ICD's who do not need them. Remember, these devices are about $20,000 for the ICD alone, not including the surgery, hospital care, or anything else related to the implantation.

    The surgery itself isn't tremendously complicated and even though the risks are low, they aren't negligible.

    If anyone wants more information, please post and I will try to get more from the doctors while we are here, but this was the core of the electrophysiological portion of the program today.

    Reenie
    Reenie

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

  • #2
    Re: The use of EP study in those with HCM.

    Thanks, Reenie,

    I really appreciate your posting this. I will refuse the study - I pretty much already told them that in an email - unless they can come up with another reason for doing one.

    Thanks again,
    Rhoda

    Comment


    • #3
      Re: The use of EP study in those with HCM.

      Rhoda, you're welcome. I'm glad I was able to get the info for you!

      Reenie
      Reenie

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

      Comment


      • #4
        Re: The use of EP study in those with HCM.

        Just a fast word of caution... prior to saying NO to the EP study be clear as to WHY they are doing an EP study. If it is soley to check for your risk of SD - well thats not very valuable - however there maybe some other reason that may be very reasonable...

        Best wishes...off to the Golf outing for me!

        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


        • #5
          Re: The use of EP study in those with HCM.

          Thanks, Lisa,

          I asked for further information on the reason for the EP exam a month ago. At the same time I only said that I did not want it if it was solely for the purpose of determining whether I needed a defibrillator. So far I have heard nothing, so I don't know what to think. I looked back at the original message and it certainly seems that it says that the purpose of the EP exam is to determine the need for an ICD.

          Thanks for checking,
          Rhoda

          Comment


          • #6
            Re: The use of EP study in those with HCM.

            Reenie:
            Thanks for this information...it's very timely for us since the specialists are pushing for Olivia to have an ICD placed ASAP. The hospital wanted her to see an electrophysiologist tomorrow, but since my husband is out of province until the weekend, it has been deferred until June 17. We have been told that appointment is a consultation only, but if they seem to want to do EP testing only to determine her suitability for an ICD, we'll now know to refuse the test.

            Thank you, thank you, thank you.

            Comment


            • #7
              Re: The use of EP study in those with HCM.

              I never had an EP study i became a candidate because my brother died before the age of 50 with HCM


              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


              • #8
                Re: The use of EP study in those with HCM.

                Originally posted by Brownie
                Reenie:
                Thanks for this information...it's very timely for us since the specialists are pushing for Olivia to have an ICD placed ASAP. The hospital wanted her to see an electrophysiologist tomorrow, but since my husband is out of province until the weekend, it has been deferred until June 17. We have been told that appointment is a consultation only, but if they seem to want to do EP testing only to determine her suitability for an ICD, we'll now know to refuse the test.

                Thank you, thank you, thank you.
                You're quite welcome. I hope that the information helps a lot of you. What risk factors does Olivia have?

                Shirley, my husband never had the EP study done either. They implanted his based on massive hypertrophy.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: The use of EP study in those with HCM.

                  Hi, Reenie:

                  After Olivia's testing at Sick Kids, the childrens' hospital in Toronto, I knew that the doctors would want to her to have an ICD, but I was just hoping that we would have more time to prepare. We knew going in that her septal measurement was one risk factor (last July it measured 3.3 cm, in January, 3.4cm; then mid-May, at Sick Kids, it was 3.5 cm). The echo report used the word "severe", and indicated that only the posterior wall was free of hypertrophy. We were told by the doctor when we saw him that the holter had captured a brief arrhythmia, but when I spoke to him last week (when he told me Olivia would need the ICD) he talked about "abnormalities" on her holter. Additionally, I watched her blood pressure drop during her stress test (pretty stressful for me too, but in a different way) and she became light headed, at which point they stopped the test. They wouldn't even do her stress test without a doctor in the room watching the monitor.

                  Our family history has no record of SD, but then, until Olivia we had no family history of HCM. Just the same, three strikes against her is enough for the docs to want an ICD.

                  We are still praying for and believing for her healing. It wasn't so very long ago we saw our friends' son healed of cancer, and we know that miracles still happen. For now, for our family, our hearts believe what our eyes can't see.

                  Abby

                  Comment


                  • #10
                    Re: The use of EP study in those with HCM.

                    I understand. Thanks for sharing her story with us. It's frightening when your kids are involved, way more so than if it were yourself or your husband. I know that. I have 3 kids in whom I watch for signs of HCM every day. It sounds like the ICD would be a good idea. I hope to hear soon that your appt went well and she's on her way.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: The use of EP study in those with HCM.

                      Hi, Reenie:

                      You're so right, it is much harder to watch your kids struggle with this. We have four kids, two with a positive diagnosis, (one severely, and one mildly hypertrophied), one classified as "borderline" since they had a really hard time measuring her septum - they couldn't identify for sure where septum stopped and wall began- and one who is currently listed as clear, although his measurement is larger than it should be. They will all be followed up regularly at Sick Kids from this point on, but we are constantly on the watch for symptoms.

                      The hardest part in all of this is how quickly things have changed for Olivia. Before our visit at Sick Kids she wasn't even on medication. Now I expect that she will have an ICD very soon, in addition to her newly prescribed daily dose of atenolol. She does seem to be handling everything well, but it is an awful lot to deal with at 13.

                      Her classmates, actually her entire school is wonderfully supportive of her. While we are in Toronto to see the EP, they will all be praying for her. Can't ask for better than that!

                      Abby

                      Comment

                      Today's Birthdays

                      Collapse

                      Working...
                      X