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Lisa Salberg Find out more about Lisa Salberg
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  • #61
    Re: I have had the following procedure...

    Womanz - Welcome - glad you have found us, sounds like your doctors are lining up the best care for you and you already have your visit set for Mayo. I would suggest you post an introduction as a new tread under the "Hello, my name is". I think more people will see it and welcome you to the HCMA.

    Also, feel free to call the HCMA office, introduce yourself if you have not yet done so.

    Looking forward to hearing more from you - Best wishes - Linda

    Comment


    • #62
      Re: I have had the following procedure...

      I had a myectomy June 15 2009. I see a definite improvement in the frequency of my feeling short of breath, but I still have some recovering to go and each day gets better.
      Dedee
      Diagnosed at age 31 with HOCM (IHSS at the time)-Guidant ICD implanted 6/13/2003-recalled/replaced January 2008 with Boston Scientific ICD-Myectomy Tuft's Boston 6/15/2009 age 63-Genetic mutation found-mother of two-Amy (age 38) has gene present-ICD implanted at Tuft's 7/13/2009-Amy has 2 children , Holly (10), Danielle (8), not gene tested yet-My other child is Randi (age 33) gene not present-my father died at age 42 and my brother died at age 31 both from HOCM.

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      • #63
        Re: I have had the following procedure...

        Im having a Myectomy Nov 9th, this Monday.

        Gene
        Myectomy, Nov 9th 2009 age 53
        Loma Linda Univ
        Redlands, Ca

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        • #64
          Re: I have had the following procedure...

          Are you having it at Mayo?

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          • #65
            Re: I am going to have the following procedure...

            I am scheduled to have myectomy two weeks from today at the Mayo Rochester. I am very frightened and my husband is in for a rude awakening.
            I am new to this site, Have had HCM for a while my septum grew from 14cm in 1998 to 27cm in Jan. 2003. Had a defiblerator dual pacer put in March 2003. Sometimes I feel like I still have the symtoms especially during menstration.

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            • #66
              Re: I am going to have the following procedure...

              Looks like it's been a while since anybody contributed to this thread. I was advised by my cardiologist to look into Alcohol Septal Ablasion. So I have an appointment at Johns Hopkins in October. We'll see how that goes.

              Comment


              • #67
                Re: I am going to have the following procedure...

                Originally posted by outlander View Post
                Looks like it's been a while since anybody contributed to this thread. I was advised by my cardiologist to look into Alcohol Septal Ablasion. So I have an appointment at Johns Hopkins in October. We'll see how that goes.
                Outlander..
                Did your doctor explain why an ASA instead of a myectomy? I am trying to evaluate the two options..

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                • #68
                  Re: I have had the following procedure...

                  Septal Myectomy

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                  • #69
                    Re: I have had the following procedure...

                    Am choosing to have the septal myectomy - awaiting the TEE results and then scheduling the surgery. Was hoping to wait until the end of May but symptoms and discomfort has increased - so may be sooner than later.

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                    • #70
                      Re: I am going to have the following procedure...

                      Originally posted by Loutinmanswife View Post
                      I am scheduled to have myectomy two weeks from today at the Mayo Rochester. I am very frightened and my husband is in for a rude awakening.
                      Just wondering if you meant 1.4 cm and 2.4 rather than 14 cm and 24 cm. Just wondering because mine measured 2.5 in 2010 and was told that a normal size was around 1 cm. Just checking...Can you clarify, please - Thanks!

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                      • #71
                        Re: I am going to have the following procedure...

                        I'm glad you pointed that out. I'm sure Loutinmanswife meant 1.4 and 2.4 cm or 14/24 mm. It was surely a typo.
                        Reenie

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

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                        • #72
                          Re: I have had the following procedure...

                          Took the poll awhile ago.

                          Originally posted by Lisa Salberg View Post
                          Ok now... I KNOW you guys are here...please take the poll so others know your here too
                          Lisa

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                          • #73
                            My ablation from about 8 yrs ago has done nicely, am active and working. However, concomitant issues include cardiovascular disease and CHF. The cvd is related to a genetic tendancy to clots and t he CHF is secondary to the HOCM. I naively thought that my problems would be all finished with the procedure. I now am on a virtually zero salt diet and losing weight. Other medical issues and meds contribute to weight gain and fluid retention. Throw in the sleep apnea and I got my hands full.

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                            • #74
                              Re: I have had the following procedure...

                              Hi Lisa,
                              I had a septal myectomy 3/2013....I'm a retired (due to HOCM) RN. So you know I did much research before I decided to go with the procedure. Early in recovery I felt I had a significant amount of improvement. Now, 9 months later, I feel I am back to my pre-op state of symptoms...We are working with new med management etc. and I have hope for improved functioning. However, I had read so many positive accounts of the outcome and improvements I must say I am a bit disappointed. How often do people feel their invasive intervention like myectomy or ablation did not help them very much? is this common? or am I an exception? Just curious...still feel I made the right decision....at least I know I tried.
                              Thanks
                              After years of symptoms:
                              Officially Diagnosed HOCM 2006
                              Myectomy 3/11/13 at non-COE
                              Extended Myectomy 7/23/14
                              At Mayo with Dr. Joseph Dearani

                              Comment


                              • #75
                                Re: I have had the following procedure...

                                JillC - I'm using my 4,000th post on you! (Sorry, no big check, balloons or confetti, you'll have to wait for the Publisher Clearinghouse Prize Patrol for that). Where did you have your surgery done?
                                Their is a small percentage of folks who do not get the relief they sought. I don't know the percentage, but I guess 5-10%?
                                Marc
                                Diagnosed @ 48
                                Saw Dr. Michael Debakey @ age 5 - "He's fine, just a little noisy"
                                Father to 3 boys 22, 25, 29 (all currently clear - pending genetics)
                                AICD - Valentines Day '08, Spark Plug replaced 11/14
                                After much research, I had a Myectomy @ Mayo for my 50th Birthday '08
                                Quietly going insane . . .

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                                Today's Birthdays

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