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Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

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bulybuly Mother of a six-year old daughter diagnosed with HCM, wife of a wonderful man just diagnosed Find out more about bulybuly
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  • Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

    Hi

    We met with the EP about ICD options for our 6 year old---38 mm, 91% EF and no symptoms except a noisy heart. She's 54 pounds---and tall and thin for 6 years.

    So if we decide to do the ICD soon, the abdominal option appears to be what we're looking at.....

    Wondering about your experiences with a similar decision, with ICDs in kids, and with abdominal ICDS

    Her septum is so large that it makes it feel like an immediate need....

    We do go to Minneapolis on the 1st of October to see Dr. Maron -- and will, of course, look forward to adding his expert opinion and thoughts to the expert opinion and thoughts of our EP (who we like very much).

    But also want to arrive in Minneapolis understanding and considering as much as possible!

    Thanks to all....

    Marsha

  • #2
    Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

    I have had an ICD via the epicardial muscle (I am 36 years old). One suggestion I would make is to either have a plastic surgeon available or present during the surgery to place a "latice type" sheet over the muscle so that when your daughter tightens her abdomin, the ICD does not reopen the muscle. I don't know the exact name of the sheet but a plastic surgeon would.

    In my case, I unfortunately had one of my ICDs rip open my epicardial which required another surgery. I have also found that EP are really specialized in cardiology but may not be the best for insicions. Just my two cents as I ended up having 6 surgeries in the past four years.

    I would be very interested in hearing what the medical staff decide to do in Oct. Stephanie
    Dx 1995 with non-obstructed HCM, verapamil 120mg
    2004, ICD, battery recall and migration x2 (3 surgeries)
    2007, 26 inappropriate shocks fr. Lead failure, two lead extraction surgeries...(total 8 surgeries in 4 years NO FUN)
    Since 2008, Living without ICD.......
    2011 First chest pains, frequent Began thinking about new ICD,,,,
    10-2014 I'm ready!

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    • #3
      Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

      Hi Stephanie

      Can I ask why you had and abdominal rather than a pectoral ICD? Thanks for the suggestion regarding plastic surgeon and the suggestions--I do know that our EP won't do the abdominal, he has a cardiac surgeon do it, with him there, since the leads have to be directly attached to the heart rather than threaded through a vein.

      M

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      • #4
        Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

        I have a sub pec implant, not an epicardial, but I wanted to echo having a surgeon do a difficult placement. I have had a cardiac surgeon place and replace my device, and it has been perfect both times. I have friends who have had EPs do subpec placements, and have had unbelievable amounts of problems.
        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.

        Comment


        • #5
          Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

          I have had an EP do both my original implant and I just had my replacement done this past Tuesday 9/16 also adding an atrial lead. First one lasted 9 years and I had no problems with that one whatsoever. Now obviously I'm still in recovery from this one, but so far so good. ( My EP also did an AV node ablation this past Jan with success)

          I don't think you can make a general statement and say don't have an EP place the device. As with any type of medical speciality, it will vary from doctor to doctor and also comes down to experience. My EP does about 300 ICD placements a year and I have 100% faith in him. He is deeply concerned and caring about my health and I know that. Not all doctors are that way. I think you need to investigate and do what YOU feel is right for you (or your child).

          Just my experience!

          Julie

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          • #6
            Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

            Dear Marsha,

            When our son was 6 years old we faced the same situation.
            Lisa helped us to find a good EP with large experience and with children.
            Since the AICD was implanted we had very good years!
            After 4/5 years a battery replacement is needed, since the AICD works also as a pacemaker.
            The EP left long "wires" in order to ensure there will be easier to grow with the AICD. and also put the device under the shoulder, but not to deep, so the replacement in the future will be easer.
            Our son has also a massive obtruction. Having the AICD was like having a good friend that helped our son to grow as an indepdent and happy boy.
            Wish you the best!
            Wishes for healh, peace and love!

            Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
            Haifa - Israel.

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            • #7
              Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

              Daniela,

              It sounds like your child at 6 was able to have the should implant...was an abdominal one discussed? How big was your child? And has it yet given him a shock?

              Thanks for sharing a POSITIVE result---I go to Minneapolis tomorrow to take her to see Dr. B. Maron---will be curious to see what his thoughts are about this.

              Thanks for sharing.

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              • #8
                Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

                Marsha --

                I will be anxious waiting to hear how your appointment went. Best of luck!!

                Marki
                Marki (34) mom to: Quest (15) positive HCM, Zak (10) HCM, waiting on a new heart for 14 months now, Sutton (7) gene negative, and MJ (2) no HCM. Wife to Michael (35). ***Remembering Priscilla (passed on October 31, 1999 @ 33 yrs old), Janice (passed on September 1, 1974 @ 16 yrs old) and Shirley (passed on October 23, 1995 @ 58 yrs old).*** All were from HCM.

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                • #9
                  Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

                  Thanks Marki! I will be sure to post after we have our consult--

                  Wishing ALL of us luck and health--my family and all on our list!

                  Marsha

                  Comment


                  • #10
                    Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

                    Hi again!

                    An epicardial option is being discussed now because our son needs extra protection.
                    If your son is treatted by a good team, with enough experience and good outcome - The results are the same - Your son will be protected and all the family will feel more safe.
                    Ask for the results they had and success treating cases like yours and with children under 6 also .
                    I understand how hard is to decide ! The technology is becoming better all the time, the device is a little smaller, more "clever" and with better outcome.My son never had a shock. I know that if something happens inside - is better to have an AICD! It is not an easy thing for children or adults, but I also know that only the AICD will help since there are arrythmias that have no other solution.
                    with HOPE!
                    Daniela.
                    Wishes for healh, peace and love!

                    Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                    Haifa - Israel.

                    Comment


                    • #11
                      Re: Share your expereinces with ICDs and with epicardial (the abdominal) ICDS

                      Hi Danielaeh-

                      Halina (my daughter) sounds very similar to where your son was 6 years ago. I am so thinking of you and wondering what is happening now---why are they now suggesting an spicardial option? My understanding for halina about the shoulder placement is that when it comes time to change it, it can be problematic because the veins can collapse, leaving the veins there useless---I also understand that with Halina's thick septum (she's almost 4 cm now) that extra leads around the back etc are sometimes needed or it won't "fire". so I'm wondering why and what the extra protection suggested for your son is.


                      Has your son ever had an "appropriate" shock--in other words, has he yet needed the device? I know that Halina some day likely will--I just hate to do it now if there is an option--she has no symptoms and is otherwise a healthy kid.

                      What a curse this is!

                      I hope you're finding your answers--

                      Marsha

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