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Phantom Shocks

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Cappy HCM and myocardial bridge patient, also have primary progressive MS Find out more about Cappy
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  • Phantom Shocks

    MY ICD went off the other night (Friday the 14th) while I was lying in bed. I had no symptoms prior to it going off. I felt fine aftewards. I called the EP on call and they told me to call the office on Monday since I was feeling okay. The Mrs. and I were not happy with that answer so we went to the local ER. They kept me for 4 hours and let me go after running some tests on that all came up okay.

    Fast forward to today:

    Call the EP and they tell me to come on in. I get there about an hour and half later and they hook me up. According to the machine, no shock was administered (all the counters were at 0) and no arrythmia's were documented. Nurse can't explain what it was, so she grabs the doctor. He comes in and tells me that what I probably experienced was a Phantom Shock which apparently is common with ICD patients. He then gives may a number for a Psychiatrist and tells me to call him.
    1. I have been electrocuted before, so I know what I experienced was in fact an electric shock.
    2. The doctor was silent on the fact that the device may have malfunctioned (implanted Aug '03)
    3. Has anyone else heard of these Phantom Shocks before?
    4. I was very annoyed and embarassed that my doctor told me in as many words that it was a mental phenomenon which caused my shock


    Comments from my doctor such as these make me not want to call them next time something happens, which of course not good, but I was very pissed off when I left the office.

    I would like some feedback from other ICD patients. Thanks

    Greg O

  • #2
    Re: Phantom Shocks

    Did they interrogate the device at the hospital over the weekend? Is it possible that they downloaded some info. at the hospital, and then the device was reset by the time you made it to the Dr.'s office?

    By the way, I have heard of phantom shocks. but I have never experienced either a phantom or the real thing. If you visit www.zaplife.org or www.implantable.com, you can read more about them.

    Good luck. Sorry about your experience. It sucks when they treat you like you are a nut. I am thankful that lately I seem to have found docs that listen to me and don't treat me like I am insane.
    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
      Re: Phantom Shocks

      My first thought was the same as Cynaburst's. Could it be that when you went to the ER the memory was reset? I wouldn't be so quick to jump on the phychiatric help.

      Reenie
      Reenie

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

      Comment


      • #4
        Re: Phantom Shocks

        I would call your device company - and ask them for some information on your device and explain the problem. I have never heard of this issue myself.

        I would visit with the doctor in a few weeks and talk this out... I would be upset too...but try to talk it out.

        Thats my 2 cents! (hey what happened to the cents symbol on a keyboard...when did they do away with that?)

        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: Phantom Shocks

          The device was not read in the hosptial, so nothing could have been reset. I knew what I felt, and the doctor could not possibly know what I felt, so its me versus him.

          I am due to see the EP again in a month, for a regularly scheduled visit. Maybe by then I will some answers for him. Basically he could not give me a reason why it went off, so I guess, he came up with the pschy angle

          Thanks for the web site info, I will check it out

          Try this for your 2 cents

          Comment


          • #6
            Re: Phantom Shocks

            where did you find the cents?

            and what is the deal with CHEESECAKE?!?

            I hope you are feeling well and I do hope you find some answers. The more I thought about the situation the more questions I had. As we all know these devices are "man made" thereby are subject to "human" failure. I can not help but wonder if the device simply did not record an event?

            I have spoken to hundereds of people with devices, they often have "wondered" if the device had in fact fired. There have been some who have been sure it fired when it had not. I will say with all due respect to these people that these were all within the first few months of having the device, these people were still very focused on the device.

            Those of us who have lived with a device for years know that basicly you forget that it is there when going about "Normal" life.

            In short - I believe you felt something - I do not know what it was but I do think something happened and you should discuss it further with your doctor.

            Be 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


            • #7
              Re: Phantom Shocks

              Cappy,

              I've had both Real and Phantom Shocks. The Real ones, which I've been awake for all 20+, seem to be preceded by a flutter that goes from my stomach to my chest, then a bright flash from behind my eyeballs and that kicked in the chest by a Mule feeling. The Phantoms seem to happen just as I'm dozing off to sleep and wake me up with a sortta "what was that?"

              My theory is that even people with ICDs who haven't experienced a Real Shock, while awake, have experienced them asleep while the device was being tested after installation or during NIPS testing. So somewhere in the back of your mind is this memory of being shocked. Your brain then decides to play a dirty trick on you, after a stressfull day or some other triger, just as you are dozing off?

              That's my two cents,
              Bruce

              Comment


              • #8
                Re: Phantom Shocks

                Well that sucks that the mind is playing tricks on me. I will remember Bruce's description for the next time (I hope there is no next time for the phantom things)

                Re: Cheesecake. I kept asking for it after my ICD surgery. Anyone who came into the room I asked them for it. My lovely bride brought me Carrot Cake though

                Comment


                • #9
                  Re: Phantom Shocks

                  Cappy,
                  That's funny that you were asking for cheesecake because I was asking for a cheeseburger after my new device(#2) was implanted in August 03.
                  Got a tray of hospital food instead.
                  Bruce

                  Comment


                  • #10
                    Re: Phantom Shocks

                    Hello!!! DELIVERY!!!! I've ordered a pizza from my hospital bed. I've had a professional massage, too.

                    Ok, yeah, I'm a freakin' high maintainence princess ("Sarah" is Hebrew for princess, just so you know ) but I've learned to care for myself in the hospital since the staff isn't always able to do so.

                    The dietician or nutritionist always comes to visit me because my trays are left mostly full of food because I have my food delivered or brought in by family and friends. Back in the day, I could even get put on telemetry and CHECK OUT to go out to dinner. Can you believe that? In the hospital for cardiac problems and they let me wander around the city (well, I was with my dad so it wasn't entirely insane).

                    It is possible to eat well in the hospital. Bring your menus with you.

                    Comment


                    • #11
                      Re: Phantom Shocks

                      Originally posted by Sarah
                      I've ordered a pizza from my hospital bed. I've had a professional massage, too.
                      Dang, Sarah, I wanna go to your hospital from now on!
                      "Some days you're the dog... some days you're the hydrant."

                      Comment


                      • #12
                        Re: Phantom Shocks

                        Yeah, me too.

                        Comment


                        • #13
                          Re: Phantom Shocks

                          My husband has used my various hospitalizations in the last few years to sample the culinary delights in the vicinity of the hospital. I had my ICD implanted at a different hospital than the one in which I had previously had 3 hospitalizations, so he was excited that he got to try something new! He was only upset when my surgery, which was scheduled for first thing in the morning didn't happen until 6:30 p.m., and he was scared to leave for fear that they might come get me at any time, so he had to defer his meal to breakfast the next day instead of the big lunch he had been planning the day before.
                          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


                          • #14
                            Re: Phantom Shocks

                            those events all happened at different places. you take your expierence with you --you know what I mean?

                            s

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