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Dr. Recommends ICD

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  • Dr. Recommends ICD

    Hello gang, I saw my cardiologist yesterday, we had a very interesting discussion. Six months ago he recommended that I seek the care of a specialist for purposes of a myectomy. For selfish reasons I have been delaying that step. In the mean time I have been more accutely aware of ongoing palpitations accompanied by light headedness, and the feeling of nearly passing out, then instant recovery. Earlier in the fall I fell off my boat with no recollection of the event. I woke up under water!! (I posted on this earlier). He said I may have gotten away with one that time. I also have been having what I might characterize as "skipped beats?" Rhythm seems normal then stops and returns with a hard thud!! When it happens it happens for a while then goes away. Anyway, the point of all this is he is now recommending that I be fitted with an ICD. I was thinking about the 5 high risk factors and can't point to 2 that would make me a high risk person. No sudden death in my family, I don't have a long history of passing out, ... I can't remember now what the others are, but I don't think they didn't fit me. I know, ...everyone is different. I also have made my appointment, January 28th, with Dr. Lever at Cleveland to be tested and see where that takes me. My cardiologist wants to get the ICD in me soon.
    First, does all this make sense with the ICD? Second, will there be conflicts with getting an ICD, then have testing done so soon? Any complications of the two together? My cardiologist is following up with his EP person and expect him to get back to me soon. My gradient is 59mm/Hg, upfrom 55 six months ago. He wouldn't tell me my septal measurement because he didn't believe it and wanted the tape reviewed and remeasured before he would tell me. Thoughts? Thanks for listening(reading),
    Steve.

  • #2
    Re: Dr. Recommends ICD

    Well, Steve, I don't know what to tell you. You do have at least one risk factor, history of passing out. I think it counts, even if it was an isolated event. I'm not happy about him not giving you septal measurements. Ask for a copy of the measurements AND the echo report. Then you can decipher for yourself what's going on somewhat. I'm not sure that you wouldn't be able to wait until you see Dr Lever at the end of the month, unless you've caught some weird arrhythmias on holter recently. Listed below are the risk factors, in no particular order. It depends on which risk factors you have and how conservative your doctor is whether or not they will implant one. Case in point, my husband only has 1 risk factor, septum of 3+cm, and he has an ICD. Let us know if you have more questions.

    Reenie

    1. septum of 3+ cm
    2. history of fainting
    3. history of adverse reaction to stress test IE: blood pressure drops instead of rises
    4. history of ventricular tachycardia
    5. family history of young sudden cardiac death
    Reenie

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

    Comment


    • #3
      Re: Dr. Recommends ICD

      Thanks Reenie, Now that I see them again in front of me maybe I have 2 risk factors. The fainting/dizziness with arrythmias, and the septal measurment of 3+ cm. As I mentioned I don't know what my most recent measurment was, but the cardio recommended myectomy before, and problably wouldn't have done that if it wasn't already 3cms. I saw my echo briefly and my septum looks like it has a big bulge almost like an aneurysm ready to pop at the top, just under the aortic valve. I can't believe it would be less than 3 cms. It's at least twice the size of the septum at the bottom, maybe a little more. Also I wore an event monitor for 30 days and recorded some crazy beats when I was feeling faint. Maybe all this adds up to his conclusion. He does seem like he wants to move pretty fast on this. He did say he would speak with Dr. Lever also since I was going there at the end of the month. Thanks, Steve.

      Comment


      • #4
        Re: Dr. Recommends ICD

        Steve, you're welcome. If you do have to move faster on this here is our story. As you know, everyone is different, so remember that. When my husband got his ICD they took him back at about 9 am. They brought him back around noon and he felt well enough to have a sandwich. They released him about 5:30 that afternoon, although most people seem to stay in the hospital overnight. We ate at a restaurant before heading back to the hotel room. We stayed another week near the hospital (I'll explain that in a minute) and he was checked out one more time then they sent him home. We drove 7 hours home and besides the soreness he was fine.

        **The reason we had to go so far away for the hospital to implant it is that he's in the Air Force. We were stationed in Japan when he was diagnosed and they sent us to Ohio, Wright Patterson Air Force Base, for the ICD. He's from Illinois, so we went there first, left the kids, and drove over to Ohio. It wasn't like we could just get up in the morning, drive 10 minutes to the hospital, then go home. We had weird circumstances for a long time.

        Please ask if you have any more questions.

        Reenie
        Reenie

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

        Comment


        • #5
          Re: Dr. Recommends ICD

          Reenie, Now that's a long trip to the hospital!! How long has your husband had his ICD? Has it ever fired? Thanks for your feedback, Steve.

          Comment


          • #6
            Re: Dr. Recommends ICD

            He has had the ICD since August 2000. It hasn't ever fired or even recorded anything unusual. We're pretty lucky. And yes, I think I probably have the prize for longest trip to the hospital for an ICD. LOL

            Reenie
            Reenie

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

            Comment


            • #7
              Re: Dr. Recommends ICD

              Steve,

              The ICD and myectomy are really 2 different items you must look at.

              If you have 2 risk factors for SD, according to all the available literature it appears an ICD is appropriate.
              If you have a gradient of 50mm+ and your symptoms are not improved with medication then myectomy is the "gold Standard" treatment for obstuction.

              As you have an appointment with Dr. Lever in 3 weeks, I would call the office and ask about the ICD question. They may do a few things - move up your appointment or tell you to go ahead with the ICD now, or tell you to wait until your seen in 3 weeks. These are VERY nice people who will help you....please call them.


              Best wishes,
              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
                Re: Dr. Recommends ICD

                A follow up to my original post here. As promised, my cardio consulted with several others in the practice I go to, as well as an electrophysiologist on my situation. He also personally reviewed the tape of my latest echo. Bottom line is he called me an unusual case, one they are not used to seeing. My septal enlargement is more to the center of my septum than closer to the top. I know the septum can get enlarged anywhere, bottom, middle or top, so this isn't a total surprise intellectually. My measurement is about 2 cm, not as large as I thought and not interfering with the mitral valve. They also reviewed my strips from the event monitor I wore for a month. The finding is I am having atrial fibrulation with signs of possible ventricular fibrulation and near syncope. As a result of that little diddy, I will be scheduled for a dual lead pacing ICD soon, before I go to Cleveland. He strongly recommends I go to Cleveland as scheduled and let Dr. Lever evalulate what if anything needs to be done related to any obstruction. My gradient is59 mm/hg. He also said I have posterial wall enlargement, and atrial enlargement. It looks like the rest of January will be interesting.
                Steve

                Comment


                • #9
                  Re: Dr. Recommends ICD

                  Steve

                  Good luck with dr. lever he will fix you up, and as far as the ICD goes I have one and i was only sore for about a week to 10 days, it's kinda cool the dr. brought the one in before surgery and showed it to me and let me hold it it's no bigger than a beeper, you just have to watch putting your arms over your head for about 6 weeks so the leads don't pull out, that was very hard for me so i put my arm in a sling, i'm really glad i got mine, my gradient is 50mmhg and iam obstructed and a strong family history of sudden death but anyway good luck and hope you are feeling better soon

                  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


                  • #10
                    Re: Dr. Recommends ICD

                    Well, Steve, sounds like you need that little box in your chest. My husband's hypertrophy is midseptal too. His is thicker than yours though. Sure looks funny on an echo! Anyway, I'll be thinking about you and your upcoming ICD placement. You'll do fine.

                    Reenie
                    Reenie

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

                    Comment


                    • #11
                      Re: Dr. Recommends ICD

                      Steve, Best wishes, we'll be watching for progress reports. Linda

                      Comment


                      • #12
                        Re: Dr. Recommends ICD

                        Go get em Steve!
                        I am one year out from my implant and don't really know it's there. You really do get used to it. My septal wall is at 3cm, but my gradient is reletively low for now. So far my pacing function is almost non-existent. There is a sense of security I have now that I didn't have before. You will do fine and I wish you the best!

                        Peace.

                        Leon
                        God Squad co-moderator
                        Nothing is as gentle as strength and nothing is as strong as gentleness

                        Comment


                        • #13
                          Re: Dr. Recommends ICD

                          Looks like you are on the right road... best of luck on your "travels".
                          Let us know how you make out. Oh send my regards to Cleveland.

                          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


                          • #14
                            Re: Dr. Recommends ICD

                            Thanks for all your thoughts and insights. I will keep you posted on progress and let you know when things get scheduled. Best to all, Steve.

                            Comment


                            • #15
                              Re: Dr. Recommends ICD

                              I just wanted to give you a followup. I am scheduled for my ICD implant on Wed. 1/21. (This week) At the same time they will also do a cath to make sure none of the chest pains I experience are related to any other cause. I'm getting a two fer. I'll let you all know how it went. Next Tuesday 1/27 I leave for Cleaveland and my appointment with Dr. Lever on the 28th. They tell me there is no problem traveling in that timeframe or undergoing testing within a week. I hope not, stay tuned, Steve.

                              Comment

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