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Reinhard Find out more about Reinhard
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  • ICD implant

    To ICD or not to ICD

    After a year of tests, 3 cardiologists and 1 electrophysiologist, it seems like I am a candidate for an ICD. It seems the more I read the more confused I get. I'm hoping for some words of wisdom.

    Here is whats known. 2 echos, 1 shows 2.3 cm septum, the other shows 3.0 cm ( Dr. Sherrid did the second one). Why the difference

    Diagnosis is concentric left ventricular hypertrophy ( non obstructive ) EF is greater than 55%. On halter, last year, I had 8 beat run of NSVT as well as atrial premature beats ( 13 times ) including 4 couplets as well as 36 pvcs. Recent halter was clean.

    Father has HCM, Fathers sister died suddenly at age 58. She did have an enlarged heart however she was taking meds for thyroid which "attributed" to her demise.

    Here is where I'm at
    1st Cardilogist has me on atenolol 50 mg, never even mentioned an ICD.
    2nd Cardilogist ( Dr. Sherrid ) says I have "a very sick heart" and should consider and ICD.
    3rd Cardiologist (HUMC) states that given the risk factors and the NSVT, I "MIGHT" want to consider an ICD.
    The electrophysiologists basically concurs with # 3.

    From what I read, 3cm in addition to nsvt and a possible death of my fathers sister indicate and ICD. Am i correct in my assumptions?

    What kind of concerns me is that at times I feel a fluttering in my chest for 2, 3 or 5 seconds and sometimes become momentarily lightheaded. this may happen once a week. Figures, every time I wear a halter, it doesen't show up.

    My apologies for being long winded but this grey cloud keeps looming over my head.

    Anyway, I'm scheduled for the ICD the end of this month at Hackensack University Medical Center. Anyone have any feedback on HUMC? Any other words of wisdom would be appreaciated.

    Thanks all
    Reinhard
    Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
    Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
    Non Obstructive. Atenolol

  • #2
    I just got an ICD last week for similar indications. I have a 1.8 septum, but I have NSVT (8 beats also being my record) and a sketchy family history. I also had a near fainting episode recently, so I am now the proud owner of a Medtronic Marquis dual chamber ICD/pacemaker.

    If you want'more indicators, you could wear an event monitor for a month or so, as I did. I wasn't really sure I had multiple repetitive NSVT until I wore a monitor for that long, and pressed a button every time I felt a flutter. It turned out I had the NSVT more than I thought.

    I will tell you that getting the device wasn't that bad at all. I am 10 days past surgery, and feeling fine. I don't even need the pain meds anymore, and all I took was Motrin. I am in California, so I have no info. about your center.

    Good luck.
    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


    • #3
      Icd

      Hi,

      The risk factors for sudden death are:
      history of cardiac arrest
      history of fainting
      history of vtach
      septal wall 3cm or more
      abnormal blood pressure response to stress test
      family history of sudden death

      Most doctors agree that 3 or more factors is enough to warrant an ICD. 2 factors may get you one if the factors are "big" like lots of vtach and a really bad family history (just examples).

      Have you had a stress test? The dizziness you feel is not a good sign.

      How far apart were the echos done? a small difference of a few tenths is to be expected but 7/10s is a bit much. Could have been a bad echo, the first one.

      I don't know anything about the med center you named.

      Please call Lisa at 973-98-7429 to find out what the HCMA knows about it. And since she has an ICD, she can speak to the experience. You can also search the archives and the current board for ICD-related posts to see what people have felt/said/etc about them.

      I can't tell you what to do, but if Dr. Sherrid told me I should have one, I would get one.

      take care,

      S

      Comment


      • #4
        Howdy Jersey guy!
        My fathers device was implanted at Hackensack, Dr. Zimmerman did it. They are very good and if I took my dad there...well lets just say that says a great deal.
        You have 2-3 risk factors and that is enough for most anyone these days to suggest an ICD.
        The differences in your Echo's - the angle the "pictures" were taken, how they measured, how much fliud you had in you that day.... many factors can alter the findings by a few millimeters although I must admit 2.3 to 3.0 is a big difference?? Either way it is HCM, you have a family history of sudden death and you amy have a 3.0 mm septum...that makes 3 risk factors....even if the septal measurement was 2.8... you have 2 risk factors...

        Good luck and let us know how you make out!
        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
          Thank You!!!

          Cynaburst
          Thanks for your reply and reassurance. Hope all is going well for you. Best wishes for a speedy recovery.

          Sarah
          My stress test came out OK. They took me to the max for my age without any signs of arrhythmia and blood pressure response was good. And this was done prior to any meds being introduced. The echos are only about 12 months apart. ( an echo I had in 1996, IVS s was 2.1 cm. Go figure

          Lisa
          Looking forward to tapping into your grey matter.

          Thanks to all for the words of wisdom and encouragement. So happy I found this site.

          Reinhard
          Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
          Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
          Non Obstructive. Atenolol

          Comment


          • #6
            Implant Complete

            Recieved my implant on Tuesday. Home on Wednesady. Now the proud owner of a Guidant 1861 AICD. After consultations with DR. Teichholz, ( Chief of the Divison of Cardiology ) and Dr. Zimmerman, (Section Chief of Electrophysiology ) I deceided to go ahead with it and received it at Hackensack University Medical Center on Tuesday, March 25th.

            Implant was done by Dr. Zimmerman. Praises and thanks are in order to to Dr. Teichholz, Dr. Zimmerman, and DR. Radoslovich of Elecrophysiology Associates of Northern NJ as well as the wonderfull, courtious staff of HUMED. They are all extremely knowledgable.

            Procedure went quite well. They even tested it 3 times. Twice in the OR and once before I went home.

            Matter of fact, when I came out of the OR, I was ready for steak and eggs

            Aside from the "nagging" dull pain my collar bone ( which will hopefully go away soon!!!!!!!!!! ) all seems well. By the way, I haven't taken any pain meds to boot.

            I will try to attend the ICD support group at HUMED on the 9th of April to get edumecated.

            Just wanted to pass this along to folks in the NY Tri State Area.

            PS. While in the recovery room, my wife came to visit me, told me how great I look and then promptly passed out. I've never seen more folks running and scrambling around in my life. They ended up wheeling her into the emergency room and kept her overnight for observation. Too bad, we could have shared the same room. I wonder If I can get a group discount. Gee, I thought I would be in the lime light for a while!!

            Reinhard
            Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
            Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
            Non Obstructive. Atenolol

            Comment


            • #7
              Glad to hear all is well with your new device...HOW IS YOUR WIFE!??!!?
              It is always nice to hear possitive information re the docs... I too had good exp. with them with my dad.
              Feel well!

              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


              • #8
                I'm glad you are doing so well!! Guess your wife didn't want you to have all the attention, huh? I hope she's fine.

                Reenie
                Reenie

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

                Comment


                • #9
                  Wife is OK

                  Wife is fine. Thanks. She been dealing with the the big "C" the last 7 years. She's a real trooper. God Bless Her!!.

                  Reinhard
                  Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
                  Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
                  Non Obstructive. Atenolol

                  Comment


                  • #10
                    Good morning Reinhard,

                    Hope you and your wife are feeling well. Sounds like you certainly have your share of medical stuff going on.

                    My husband sees both Dr. Sherrid and Dr. Zimmerman also! Zimmerman implanted ICDs in both my husband & daughter. Great team!!! Dr. Radoslovich has such a dry, funny sense of humor!

                    We haven't attended the ICD support group, but think about it everytime it comes in the mail.

                    Take care of yourself. The pain should subside soon.

                    Karen

                    Comment


                    • #11
                      Support Group

                      HUMED Center is having and ICD support group gathering on April 9th. I'm going to make it my business to attend that one.

                      Question to anyone that can answer this one.
                      Although I feel good with the implant. Last night I was very tired, hit the sack, trying to relax and watch the tube. My icd is set to pace at 60. Prior to the ICD I went down below 50. Anyway, out of the blue, my heart rate jumped to about 120 or more and after a minute it went back to normal. This happened 2x last night. ( ICD is set to fire at 185 ). Anybody have any clues to what might have happened? Could it just be irritation of the leads? I never experienced anything like that before. I saw the docs today and they ran a test said everything was okey dokey. ( leads ok and no events ).

                      Thanks & Puzzled

                      Reinhard
                      Diagnosed in 1980, ICD Implant 2003, 2nd ICD in 2010.
                      Gene Positive, As is my mom as well as one of my 2 sons ( 50% Rule ) and my Grandson.
                      Non Obstructive. Atenolol

                      Comment


                      • #12
                        Sometimes the meds used during surgury hang with you for a few days it may be a few days until everything clears from your system.
                        Call the doctor and check it out but know your device is there if you really need it.
                        Bye from Chicago...
                        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

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