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L.A. ICD Story

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Cynaburst Find out more about Cynaburst
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  • L.A. ICD Story

    Hi there everyone ,

    For those of you who have followed my story and who have given me advice over the last month, here is an update....

    As you may recall, when we left our heroine ("Cynaburst") she was a 38 year old mom of a 14 1/2 mo. old son about to celebrate her one year anniversary of the removal of her benign brain tumor (an acoustic neuroma) and believing that she required annual MRI scans to monitor any tumor regrowth.

    Cynaburst's electrophysiologist recommended an E.P. Study following a pre-X-mas episode of pre-syncope, but because Cynaburst was a devout follower of the HCMA's message board, she knew that an EP study was unlikely to be helpful.

    She went all around La La Land and sought second opinions from three HCM experienced doctors who were recommended by the HCMA. Much to Cynaburst's dismay, it seemed that many of the doctors were heading in the direction of an ICD.....BUT WAIT....If you have an ICD, you can't have an MRI, and Cynaburst thought that she had to have MRIs every year because that was what the neurosurgeon had previously told her.

    Well, it turned out that what was apparently Cynaburst's last MRI was clean, and the neurosurgeon said that CT scans would do if Cynaburst needed an ICD, so that was fortunate when all 4 of Cynaburst's doctors agreed she needs an ICD......

    OK...that brings us up to date. Somehow it seems easier when I pretend its a movie synopsis instead of my life!!!!

    So folks, drumroll please, it seems I am getting an ICD. I have made a couple of consult appts. with some reputable EPs. Does anyone have any advice to share with me? Subcutaneous or subpectoral? How soon can I take care of my 26 lb. son, drive to the market, etc.?

    Any advice or support would be much appreciated.

    Thanks.

    Cynthia
    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.

  • #2
    Cynthia,

    Glad you can get your ICD!

    Mine is in the pectoral muscle, so I guess that's what you mean by subpectoral in your post. I was able to drive at one week, but this was probably not a good thing and certainly wasn't recommended by the doctor. I think they had two weeks before driving in mind. The lifting restriction is strict and you want to follow it to avoid risking any trouble with your lead. So, you won't be picking up your 26lb. son for a while. Otherwise, I thought the recovery from the ICD implant was quick and painless. Others may disagree. Good Luck!

    Elizabeth

    Comment


    • #3
      I'm so glad you're able to get the ICD and monitor your brain! You will definitely be restricted from lifting your son for a while, driving, and lifting your left arm above your head. My husband's ICD is subcutaneous. He rarely has any problems with bumping it, and we have active 11, 9, &7 year olds that he wrestles on the floor with. I hope that makes you feel better. Also, he was out of the hospital the same day and we went out for buffalo wings for supper that night. (We weren't at home and had to eat somewhere, but he felt well enough to do that and not order pizza in.)

      Reenie
      Reenie

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

      Comment


      • #4
        Questions for Reenie and Elizabeth

        Hey Guys,

        Thanks for your comments.

        Elizabeth - do you know the reason that yours was implanted under the muscle? Was it because of looks, your size, or something else?

        Reenie - How long was it before your husband was wrestling with the kids? I must admit that is one of my big concerns...how long it will be before I can lift the baby and play with him. He does tend to whack me alot in the chest area.

        Thanks again.

        Cynthia
        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
          Cynthia,

          Our story is a little complicated. My husband is military and we were living in Japan when he was told he needed to get the ICD. They sent us to Ohio for the procedure. About 2 weeks after the actual surgery, he had to go back to Japan. I stayed in the US with the kids waiting for the military to medically retire him. They didn't. We didn't see him again for 2 months. So he had plenty of time to recuperate between the surgery and when he was able to play with the kids. They were 9, 7, &5 at the time. Sorry I can't be of more help to you. Let me know if there is any more that I can help with.

          Reenie


          Oh, yeah. Forgot to add that he will learn quickly not to hit you in the chest. It will become second nature to not touch you there. I even am so strange that when I see others without shirts on, I automatically look for the "box." And I cringe when my friend's 3 year old twins bump into his chest, although he doesn't have an ICD. I know, I'm weird....
          Reenie

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

          Comment


          • #6
            Cynthia,

            Well, here's the deal and maybe someone else can explain this to me better. Weeks after my ICD implant, I started wondering what keeps this thing from falling south So when I went back for a six week check-up, I asked how they implant the ICD so that it stays put. The doctor I asked told me they put it IN the pectoral muscle-they make a pouch in the muscle to hold the ICD. So, if this isn't right (how do I know, I was pretty much asleep) and it is actually subcutaneous (like Reenie's post) then, the question remains: How do they implant these things so that they stay put? I can't believe that you can just stick something in the body and gravity won't pull it down. Help, anyone?

            Elizabeth

            Comment


            • #7
              Elizabeth, Scar tissue forms around it and it just stays put, at least that's the plan. Muscle is pretty strong, and doesn't allow the shifting that might happen with something like a breast implant. The marvels of modern medicine! Linda

              Comment


              • #8
                Dear Elizabeth,

                This is how I've always imagined it: I think there is connective tissue holding the skin to the muscles. I think what the doctor does is to cut away just enough of the connective tissue to fit the ICD in. The skin will stetch a little over it so that it fits. Then, like Linda said, when the scar tissue forms it sort of stiffens the connective tissue around the ICD to make sure it doesn't move around. I do know that if you hit it hard enough it will move a little, but it shouldn't move a lot. Does any of that make sense?

                Reenie
                Reenie

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

                Comment


                • #9
                  L.A. ICD Story

                  Cynthia,

                  I've just had my 2nd ICD surgery. It is not a bad surgery your just
                  a little sore and I only needed pain medication for the day of my
                  surgery. My device shocked me when I was rollerskating (very fast
                  as I chased after my son) I didn't even realize what had happened
                  until I tried to get up for the 3rd time. It wasn't painful just a weird
                  sensation but I was a little dazed after the shock. It gives me peace
                  knowing that I have my buddy close by. Your a strong person and
                  have had many challenges to face. Keep up your spirits and you
                  will do well.

                  GOD bless you,

                  Margie

                  Comment


                  • #10
                    Re: L.A. ICD Story

                    Hey all,

                    I just wanted to share something that I learned yesterday. I went to one day of the national conference held by the Acoustic Neuroma Association, or ANA, as it was held near where I live. I attended a seminar on Tumor Recurrence, since that is the one issue that worries me. (Supposedly, my tumor was completely removed, but they still require follow up, usually by MRI, to make sure that nothing is left or growing back. If it is, they can usually treat with radiation...The tumor probably wouldn't grow as big as the original one and require another surgery.

                    Anyway, I was worried about whether my inability to have MRIs because of my ICD would prejudice my future follow up or treatment options in the future. The 2 neurosurgeons giving the talk said absolutely not. They said that the new CT technology was really great, and that I had made the right decision by deciding to get the ICD. That made me feel really good. It even made the fact that I backed up into a short red pole in the gas station on my way there not so bad! Oh well....I just told my husband that it wasn't my fault...I had a brain tumor!
                    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


                    • #11
                      Re: L.A. ICD Story

                      I'm glad you were able to attend the conference. Sounds like it was quite a reassurance for you in more ways than one. Too bad about the car, but some days are like that. At least you had a good excuse. Linda

                      Comment


                      • #12
                        Re: L.A. ICD Story

                        It is always good to hear that your choice was a good one ...even if we already knew 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


                        • #13
                          Re: L.A. ICD Story

                          Hi I had mine done Oct. 16th 2002. I was back to work late Nov. with strict instructions no liftingand not to raise above my head. My daughter was 5 then and around 35 lbs. she understood very well, was very helpful, and very cautious. It is under the muscle and it was very painful for me, they went through the armpit. Its about a 3 in scar. My procedure was a bit dificult only because I have breast implants. The pain was strong for a few weeks and subsided slowly after that, but pain meds were taken only when I absolutly couldnt stand it. We are military also, surgery was done in Miss. My doc is great, hes pretty much part of the family. My advice is follow instructions to the T, take it easy,clean your house before you go in (lol),and remember your family is there dont be afraid to ask for help. I recently got the ok to do light exercise a few months ago. If need to chat, just pm me. I will check peridoclly to see if ya need to talkLana
                          Lana

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