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Lisa Salberg Find out more about Lisa Salberg
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  • #31
    Re: I have had the following procedure...

    You should go back and read all of the old posts on this section of the board. I think you will find all of the info. that you are looking for. Just make sure you select from the beginning of time in the dropdown, and start there, and work your way up to the present.
    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.

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    • #32
      Re: I have had the following procedure...

      dkell88: I know it is hard to read ALL of the previous posts, I have had to do it myself on ocassion, contact your Cardio Doctor and ask him (her) what to recommend. My understanding is septal ablation is only done in Texas and is VERY painful.
      Originally posted by Neenee View Post
      I had my myectomy & mitral valve repair on Feb. 20, 2007 and three days later a dual pacemaker/ICD unit was implanted.

      My doctor told me ( after I asked ) that the thickness would not grow back. Why are some being told it 'might'......and others that it 'wont'.
      NeeNee:

      I just saw your post and don't know if you havefound an answer, but...I was told the same thing and asked the same question.

      Growing back occurs in younger people who are still growing, regrowth in older people is VERY RARE, because your body (and heart) are no longer growing.
      Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

      Comment


      • #33
        Re: I have had the following procedure...

        Originally posted by Seabee Vet View Post
        dkell88: I know it is hard to read ALL of the previous posts, I have had to do it myself on ocassion, contact your Cardio Doctor and ask him (her) what to recommend. My understanding is septal ablation is only done in Texas and is VERY painful.



        Growing back occurs in younger people who are still growing, regrowth in older people is VERY RARE, because your body (and heart) are no longer growing.[/FONT][/COLOR]

        hi to all -- my name is reena and i've been lurking for quite a while now but thought i would offer my own experience with the ablation. my brother and i were diagnosed with hocm in '98 and had the septal ablation in August '98 and March '99 at methodist hospital in houston. I was 26 and he 22 at the time. just before the ablation I was having severe sob and difficulty walking and after a quick recovery all changed.

        i have to say we were and to some extent still are ignorant about hcm and so when I was told there was nothing else to worry about i thought i (we) were cured. i even stopped seeing the cardiologist because i thought i was fine and in most respects i've gone on to live a productive life but this easter while having dinner i passed out. i realize now i've had one other syncope before this but i didn't say go to the hospital and just thought it was due to a cold.

        about 5yrs ago my uncle died of sudden death and once the doctor's found that out along with my multiple syncopes it was decided the best coarse of action was the icd. i was able to speak to lisa and she helped me decide that it was the right thing to do for me.


        my brother seems to be fine and has not had any problems since his ablation but due to my uncle's death and my syncopes his doctor said at some point he probably would need an icd and he opted to get it sooner rather than later. so a week after my surgery my brother was implanted at the hcm specialty center in san antonio.

        since then my symptoms have worsened and i am now on 200mg of toprol and they have decided to start pacing me. i live in nyc am under the care of dr. sherrid and now have been diagnosed with apical septal hypertrophy.

        i do wonder what if ... what if i didn't have the ablation and what if we looked at other methods before jumping into this but because we were terrified of the myectomy, the ablation sounded like the only good option.

        i can tell you that the ablation itself wasn't bad or terribly painful. my brother was I beleive #32 in Dr. Spencer's study and he did say it was painful and uncomfortable, but I was #96 and they, I gather, got better at pain management and i really don't recall it being horrible and within a week's time i was back in nj and going to grad school and for all intents and purposes back to normal.


        it's been a whirlwind and quite frankly devasting and am hoping and praying for the calm.


        i know i can't look back now and I am grateful for the 8 years of deluded belief in an HCM free life, but i now know that i have to be realistic, better informed and an advocate for myself. this website has been a godsend.

        sorry this is long but i hope helpful.

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        • #34
          Re: I have had the following procedure...

          Welcome to both Reena and dkell88. - Linda

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          • #35
            Re: I have had the following procedure...

            I had the alcohol septal ablation in Feb. of 07. I did very well for the first 7-8 months. at my return to the U of M in october, my resting gradiant on echo was back up to over 130. Now am going to see cardiothoracic surgeon the first of next month. My insurance requires me to have care within my area if the procedure is available so will see a surgeon in Grand Rapids Michigan at Spectrum Health.

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            • #36
              Re: I have had the following procedure...

              Cheryl,

              Welcome . Please take a few moments and introduce yourself on the hello my name is.. forum. It will be a journey for you , now having to have surgery but others have traveled your path and will offer you their experience.

              Tell us more about you and your HCM history.

              Pam
              Dx @ 47 with HOCM & HF:11/00
              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
              Lead failure,replaced 12/06.
              SF lead recall:07,extracted leads and new device 2012
              Myect.@ Tufts, Boston:10/5/03; age 50. ( gradient@ 240 mmHg ++)
              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
              Genetic mutation 4/09, mother(d), brother, son, gene+
              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

              Comment


              • #37
                Re: I have had the following procedure...

                Cheryl - Welcome - Linda

                Comment


                • #38
                  Re: I have had the following procedure...

                  I had a myectomy performed at Northwestern Memorial by Dr McCarthy, January 22th 2008. The surgery went great for me. Northwestern did a great job, relatively small amount of discomfort and back in four day. All the lightheadness and shortness of breath is now gone, along with the grayness in my face. Today I feel the best in thirty years. Off of all medication and doing just about anything I want to do.
                  One word of caution, if you are planning on a myectomy be sure you choose a doctor and hospital with a lot of expertise in this procedure as this is a complicated procedure.
                  "Getting off the operating table is not the issue, it is the quality of life after the myectomy."

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                  • #39
                    Re: I have had the following procedure...

                    Earlier this month I met with my Cardio Doctor at the Minneapolis VA Medical Center for a check up because I am still have energy problems after my Myectomy in January 2007.

                    After new Echos my Doctor feels that either the protective sac around my heart collapsed, holding my heart tightly and making it harder to beat or the Septum has either started to regrow or not enough was removed. I explained about the scar tissue causing it to work harder to beat and the possibility that my exposure to Agent Orange my have aggrevated it.

                    He is going to set up an exam by a Team specializing in heart problems to check me out and determine what may need to be done, because he feels I should not be having these problems any longer.

                    Any thoughts or comments on the value in doing this?
                    Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

                    Comment


                    • #40
                      Re: I have had the following procedure...

                      I'm not sure there's a comment to be made here. Your cardiologist has said, essentially, that they'll do more work to figure out what's going on. But without saying what any of that work might turn out to be, it's hard to comment.

                      Are these the people who did your myectomy? If you saw an HCM specialist, I'd suggest that you recontact them.

                      Gordon
                      Myectomy on Feb. 5, 2007.

                      Comment


                      • #41
                        Re: I have had the following procedure...

                        Gordon,

                        The Myectomy was done at the VA Hospital by Dr. Herbert Ward from the University of Minnesota Hospital, he is the ranked expert in Minnesota on HCM. I have to go through the VAMC to contact him, my present VA Dr. has shown more interest in my condition than anyone else and I have complete faith in him.

                        Mainly, I was wondering if anyone else has gone through further research to determine what may cause the continued shortness of breath, etc. or if they may have had further surgery in search of an answer.

                        Bob
                        Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

                        Comment


                        • #42
                          Re: I have had the following procedure...

                          Sorry to disagree w/ you Bob but view the link... this man is the top dog in HCM in Mn.

                          http://www.mplsheart.org/research/re...o.asp?rt_id=74


                          addendum to above : top dog in the non VA world of Mn....too bad these worlds are kept separate in this free country.
                          Dx @ 47 with HOCM & HF:11/00
                          Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                          Lead failure,replaced 12/06.
                          SF lead recall:07,extracted leads and new device 2012
                          Myect.@ Tufts, Boston:10/5/03; age 50. ( gradient@ 240 mmHg ++)
                          Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                          Genetic mutation 4/09, mother(d), brother, son, gene+
                          Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                          Comment


                          • #43
                            Re: I have had the following procedure...

                            Pam, I think he meant his doctor is the top HCM doctor in the VA system in Minnesota. He has not been able to see civilian doctors for this because of insurance reasons.
                            Reenie

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

                            Comment


                            • #44
                              Re: I have had the following procedure...

                              I often try to avoid loooong sentences by keeping things simple. So I've caused some misinformation here. I'll give you the long version, instead...

                              When the VA decided I needed the Myectomy, my doctor (VA) asked if I had any insurance, because they would rather I go to the Mayo Clinic or the University of Minnesota Heart Clinic. Having none, the VA contacted the U of M and Dr. Ward, who is very good, was assigned, volunteered, drew the short straw...anyhow, got stuck with me. I was told by the VA "he was the best in this area". When I met with him the night before the surgery, I felt very comfortable with him and he sounded like he knew what he was doing. He also returned to install my pacemaker, but I have not had contact with him since. I only wish he had been able to do the follow-up, but the VA hospital handles that.

                              I AM satisfied with the VA Cardio Doc I'm seeing, he has more concern for me than ANYONE at the VA hospital, with the possible exception of my Psychaitrist. Beyond those 2 the entire staff refuses to listen to me or provide any assistance, because they don't think there is anything wrong with me. They were astounded when I had the Myectomy.

                              At this time, I am awaiting decisions on 2 separate claims that should be resolved in a couple months. I've been fighting since March 2003 for approval of PTSD and Unemployability, but the VA considers both of them "non-service connected", evidently trying to associate both with my HCM and dumping it on SSDI. This is not allowed because the two are not to be considered to affect one another, but the VA refuses to look at my Military records or discuss any of the issues with me. I could get into more long stories here, but they are not related (technically) to the Myectomy.

                              Lisa, is helping me to determine if Agent Orange may have caused my HCM to become agitated because there is no history of it in my family and I was a "normal/healthy" American boy prior to 1998 when it was first discover. And, so far, the Minneapolis VA has been willing to cooporate with the research. If, it can be established that Agent Orange had any possible effect on my heart everything previously mentioned here will 'go away' and I will be rated 100% disabled. If, not my efforts to be accepted as unemployable (due to PTSD) will render me 100% anyhow. I am presently rated 80% disabled, it's complicated...

                              THANKS for your feedback and everyone's help, this Community Page has been extremely helpful to me, I wouldn't have a clue as to what was/is happening to me without you.
                              Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

                              Comment


                              • #45
                                Re: I have had the following procedure...

                                Seabee Vet...Your current issues sound so familiar to me. I was diagnosed in Sept. 07, had a myectomy in October 07. I felt somewhat better for about a month after the surgery but then continued to have shortness of breath with little exertion. My physicians kept telling me that it would take at least 6 months after surgery to feel better so I waited. In July I finally went to the ER for the shortness of breath and palpitations where I was told I was in heart failure. A repeat echo was done at this time and my obstruction was still present. In retrospect I believe it was never relieved by my first myectomy and it was implied on my consult at Mayo that enough muscle was not removed during the initial surgery. I had a second myectomy at Mayo Aug. 20th and am at home recovering. The best suggestion I can give you is to ensure the specialist of the surgical team you are seeing. Although I researched the disease and the surgery prior to my first procedure, I was led to believe by my cardiologist as well as excellent cardiovascular surgeons that this was not a complicated surgery and I have definitely been proven wrong. Go to the experts, they are listed on this site as centers of excellence. Good Luck and hang in there, we're tough.
                                Pam

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