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What are the criteria for having a device implanted.

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  • What are the criteria for having a device implanted.

    I have recently seen an HCM specialist and I did like him but I have a question about his suggestion that I have a defibrillator put in. At the time that I saw the Dr I had not obtained all the facts on my grandfathers death. I was always led to believe by my mom that it was sudden but he actually had a history of heart disease and had gone to the Dr that day for pain in his chest. SO it actually wasnt the "sudden death" we thought it was. I have a gradient of about 2.5 to 3 ( I was told one number by the MRI technician and another by the DR). The Dr is insistant that I need a device even though I now have only one risk factor and little to no symptoms. He was even impressed by how well I did on the stress test. It was actually my legs that finally gave up, my heart rate and BP were good to go. What do you guys think?
    2.6 Septal Measurement
    ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
    "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
    ~Steel Magnolia's~

  • #2
    Re: What are the criteria for having a device implanted.

    Are you talking about your septal measurement being 2.5-3.0? Gradients are measured in "mm" and gradients have nothing to do with risk.

    The fact your father had chest pain...then died suddenly IS sudden death. He had symptoms of heart disease - but it sounds like he had an arrthymia and died from that = Sudden Death.

    Living with an ICD is no big deal really. If it was suggested I would give it careful evaluation

    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


    • #3
      Re: What are the criteria for having a device implanted.

      I am talking about my septal measurement. 1 is normal right? Mine is about 2.5 to 3.

      My Grandfather was discharged from the military for ongoing heart problems. Wish I knew exactly what they were but we are talkng about 50 years ago. I dont know that is was HCM...I dont know that it wasnt.

      I do know that my holter monitor read normal, my stress test was good and I am pretty much symptom free. I will admit I find it a little hard to swallow that I need a defibrillator.
      2.6 Septal Measurement
      ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
      "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
      ~Steel Magnolia's~

      Comment


      • #4
        Re: What are the criteria for having a device implanted.

        Gayle, the sudden death of your grandfather and the septal measurement of 3 cm are both risk factors for you having sudden death. My husband is unusual, admittedly, but his only risk factor was large septal measurement and he had an ICD (defibrillator) implanted almost 4 years ago. Thankfully he hasn't had it fire, but we're both glad he has it. It didn't take him long to get used to it either. If you want more info on this, just ask. Lots of people here can tell you their experiences.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: What are the criteria for having a device implanted.

          Gayle,
          While an ICD is by no means a major operation, and it does serve as a safety net, I can understand your desire not to have a procedure you don’t really need at this time.

          Might I suggest a second opinion. Find out exactly where you stand.

          Best regards,
          Burt

          PS Where's your picture?

          Comment


          • #6
            Re: What are the criteria for having a device implanted.

            Thanks Burt that is exactly what Im talking about!

            I have tried to put a pic on but couldnt make it work. Yours is GREAT though
            2.6 Septal Measurement
            ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
            "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
            ~Steel Magnolia's~

            Comment


            • #7
              Re: What are the criteria for having a device implanted.

              Gee, I'm kind of in the opposite situation. I want to have an ICD put in but no one thinks its necessary-which it probably isn't, but I would feel better having one. I hope you get it all sorted out though. Perhaps a second opinion will be neccessary.

              Take care,
              Pam
              It's not what you gather, but what you scatter that tells what kind of life you have lived.

              Dx in Feb/99. Obstructed. No ICD, no surgeries, no family history. 2 sons ages 14 and 6.

              Comment


              • #8
                Re: What are the criteria for having a device implanted.

                Gayle and Pam,
                Why not try to post your pictures again. Tim has now made it very easy. If you still can’t do it ask Tim for help. He has graciously offered to do so.
                Burt

                Comment


                • #9
                  Re: What are the criteria for having a device implanted.

                  im with you on that one....

                  i have had both dr. barry maron and my local cardiologist tell me i NEED to get this ICD...but i have NO sudden death or heart problems in my family history. my measurements are 2.5-2.8 (different both times) and i have pretty bad symptoms...but never passed out or anything. but they insist on getting the ICD monday...
                  ~janelle*
                  \"The heart swells at the magnificance\"

                  1 timothy 4:12: Do not let others look down on you because you are young, but set an example for believers in speech, in life, in love, in faith, and in purity.

                  Comment


                  • #10
                    Re: What are the criteria for having a device implanted.

                    Janelle,
                    I hope all goes well today. I will say a prayer for you. Since you and I are sort of in the same boat here please let me know how things go for you.
                    2.6 Septal Measurement
                    ICD Aug 2010 (pushed into it over 6 abnormal beats...hate it!!!)
                    "I would rather have thirty minutes of wonderful than a lifetime of nothing special"
                    ~Steel Magnolia's~

                    Comment


                    • #11
                      Re: What are the criteria for having a device implanted.

                      Hi! I'm a bit ignorant when it comes to ICD's. Actually, I know nothing! What is the criteria for having one? Wouldn't it be safer to have one than not have one? What exactly does it do?
                      Rene'

                      Comment


                      • #12
                        Re: What are the criteria for having a device implanted.

                        Originally posted by gayle
                        I am talking about my septal measurement. 1 is normal right? Mine is about 2.5 to 3.

                        My Grandfather was discharged from the military for ongoing heart problems. Wish I knew exactly what they were but we are talkng about 50 years ago. I dont know that is was HCM...I dont know that it wasnt.

                        I do know that my holter monitor read normal, my stress test was good and I am pretty much symptom free. I will admit I find it a little hard to swallow that I need a defibrillator.
                        you could be talking about me--max septal measurement 3.4; no symptoms; no family history of sudden cardiac death; no gradient; no obstruction; one parent with very mild hypertrophy but no symptoms ever(past the age of 60).

                        but i have an icd.

                        depending on who you talk to you'll be told you should or shouldn't have it. some believe strongly that a septal measurement of 2.6 cm+ is by itself a major enough risk factor (keep in mind that part of the arrythmia story is that the heart's electrical rhythm gets thrown off by the assymetrically arrayed cells that those of us with hcm have--those with higher hypertrophy presumably have more of these cells and thus more potential to get our electrics go haywire); other specialists will tell you that unless you've fainted etc. and/or hit 2-3 of the major risk factors icd's aren't necessary. i've heard from specialists in both camps--i'm glad that the one my insurance supports went for the icd. one of them is wrong--i'd rather have the icd for no reason than not have it and...

                        the implant procedure is a breeze (the worst part for me was the insertion of the i.v--had to be stabbed multiple times); i did too much, too soon post-implant and so have my device sticking out more than normal. but that's me, and that too can be fixed.

                        Comment


                        • #13
                          Re: What are the criteria for having a device implanted.

                          i would really consider getting one, the protection it offers is priceless. I got one in jan. 2000 after my only sons death (sudden death) when he died at school, my specailist sent to another great doctor and before they actually implanted they did a study on my heart to see how likely I was to have those rythms and I am not a real sick person, normaly you wouldn't be able to pick me out of a crowd having hcm and I needed it and now I feel a little more safe in knowing down the road I'll be here for my daughter. Are you seeing a specailist? If not thats probley what you need to do, Lisa could help you there, getting you to the best place for your second opinion. Either way you go, you sould feel 100% sure you are doing the right thing. Good Luck and take care!!!
                          Jen

                          Comment


                          • #14
                            Re: What are the criteria for having a device implanted.

                            Originally posted by Rene' Koenig
                            Hi! I'm a bit ignorant when it comes to ICD's. Actually, I know nothing! What is the criteria for having one? Wouldn't it be safer to have one than not have one? What exactly does it do?
                            Rene'
                            Hi. An ICD is like the defibrillator they use in the ER, the paddles, to shock your heart back into a good rhythm, except it's surgically implanted in your chest, monitoring you 24/7. I'll list the 5 major risk factors below.

                            Reenie

                            1. Septal measurement of >3 cm
                            2. history of ventricular tachycardia
                            3. history of fainting
                            4. history of blood pressure failing to rise during stress test
                            5. Family history of people dying of sudden cardiac death before age 50
                            Reenie

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

                            Comment


                            • #15
                              Re: What are the criteria for having a device implanted.


                              Hi. An ICD is like the defibrillator they use in the ER, the paddles, to shock your heart back into a good rhythm, except it's surgically implanted in your heart, monitoring you 24/7. I'll list the 5 major risk factors below.
                              just to clarify: i know reenie was typing quickly, but an icd is not implanted in your heart. it is implanted in your upper chest (in the pectoral muscle) or near an armpit. the leads that monitor and provide therapy are threaded through a vein into the heart. getting an icd is not heart-surgery, it is an outpatient procedure

                              Comment

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