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Lisa Salberg Find out more about Lisa Salberg
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  • #76
    Re: I have had the following procedure...

    I had it done in Denver at St. Joseph hospital....it is not a "Center of Excellence" per se but it is our #1 Heart Hospital and my surgeon had done over 20 of these procedures ...he looked for valve problems and cordae problems and was prepared to repair them if necessary....but he didn't find problems with either. Just high pressures coming off bypass that could not be accounted for by the septum....Guess I just have some dang strong heart muscle.

    Happy 4,000th!
    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


    • #77
      Re: I have had the following procedure...

      I did a check and in one research in 2002, they estimate an 85% improvement of symptoms. Although the definition is not clearly defined, but I think most would agree that it would have to be a significant improvement. Jill, you may wish to visit a COE, if just for the peace of mind. A COE see's only HCM patients, is actively involved in HCM research, and most surgeons there have done hundreds of them. We have found many who have gone elsewhere and their surgery may not have taken as much tissue as needed. This is where the experience comes into play.
      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 . . .

      Comment


      • #78
        Re: I have had the following procedure...

        Thanks Marc... In my most recent appointment, I was told that the cardiologists are having a meeting about my case (I belong to an HMO) and they may have me try disopyramide and see if they can get my quality of life improved....However, beyond that, they will not hesitate to send me to Cleveland clinic for evaluation. I could have insisted on Cleveland Clinic for my surgery but didn't. I trusted my intuition that I was in good hands for the surgery here in Denver......Now, of course I am second guessing myself.....and the thought of a redo is rather disconcerting.....But ultimately, the truth is best known, rather than wallowing in a sea of unknowns...I am a pretty tough cookie.....and willing to try the meds....but maybe I should send my records to a HOCM center for a second opinion.
        Last edited by JillC; 12-21-2013, 07:27 PM.
        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


        • #79
          Re: I have had the following procedure...

          I had a myectomy in 2012 and now am experiencing the same symptoms as before my surgery and was told yesterday that it appears that the muscle has rethickened and will need surgery again. Has this happened to anyone else?

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          • #80
            Re: I have had the following procedure...

            Hi Alton,
            This does occur, but it's quite uncommon in adults. Most often it happens if too little heart muscle was removed the first time.

            Are you seeing a specialist in HCM? If not, I'd strongly suggest that you do; you might want to call Lisa in the HCMA office to get some help with finding one -- call (973) 983-7429.

            Gordon
            Myectomy on Feb. 5, 2007.

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            • #81
              Re: I have had the following procedure...

              thank you. The cardiologist I saw in Raleigh suggested Johns Hopkins or Mayo Clinic and kind of dropped me there without helping with a referral and I don't know how to go about it being so far away from either place. I will call her to see if she can help.

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              • #82
                Re: I have had the following procedure...

                Well, you've come to the right place! Why don't you call the HCMA office ((973) 983-7429) tomorrow, and make an appointment to talk with Lisa? She can help connect you with one of the centers of excellence in HCM. That's what I did when I suddenly needed a myectomy, and she was extremely helpful!

                Gordon
                Myectomy on Feb. 5, 2007.

                Comment


                • #83
                  Re: I have had the following procedure...

                  I will have a Apical Myectomy operation at the Mayo Clinic very shortly. I expect it to go well. I have a great deal of confidence in the surgeons and staff of the Mayo. They are very responsive and their confidence is contagious.
                  Still I have anxiety about the surgery. From what I have read, this procedure has been performed only about 100 times.
                  My version of HCM is non-obstructive, but the mass of tissue in the left ventricle is dangerously large. The surgery will increase the volume of blood pumped by the left ventricle.
                  Has anybody on this forum had this procedure? If so, how did you fare immediately following surgery in the ICU? Any suggestions for pre-op?
                  Thanks in advance.
                  PS: My apologies for any spelling errors. Couldn't figure out the spell checker.

                  Comment


                  • #84
                    Re: I have had the following procedure...

                    You should post again in the myectomy section 4advice. I know we have had one or two lately that have had apical myectomy.
                    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


                    • #85
                      Re: I have had the following procedure...

                      I had a septal myectomy 5/12 at Cleveland. I'm doing better, but I still have skipped beats, shortness of breath and fatigue. I was hoping to have more energy than this. I'm been back to Cleveland and, after more testing, they say that a ICD isn't indicated. I don't know. Maybe this is all in my head.


                      Sent from my iPad using Tapatalk

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                      • #86
                        Re: I have had the following procedure...

                        It's most likely not, all in your head.
                        I had a myectomy 3/13 and am having a lot of the same struggles. It is difficult when you read accounts of other people's myectomies and they have had miraculous recoveries ..... running up stairs ....doing marathons etc. And you start to doubt yourself. Don't doubt yourself. Cynaburst. one of the moderators made a very wise comment to me when I was struggling with issues like yours....1) Every case of HOCM is very individualized and 2) even if they removed all of your physical obstruction, you still have HCM without the "O" which in and of itself has symptoms of fatigue and arrhythmias. The question is, are the symptoms treatable? I, personally,experienced severe fatigue issues and I went from 20% functioning to at least 50-60% functioning once my cardiologist agreed to wean me off beta blockers for at least a trial to see if they were the cause. You just need to let your cardiologist know exactly what your symptoms are and how severe they are.....(Read up on the NYH system of grading heart failure) How severely is it affecting your quality of life? and ask for options available to you.....how is your echo? has the obstruction returned? Ask questions, don't doubt yourself..you know your body better than anyone...keep a diary of symptoms if you need to, Good Luck.
                        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


                        • #87
                          Re: I have had the following procedure...

                          I was much worse after my myectomy and it was that way for 2 years. I too returned to CCF and was told it is what it is. Perhaps I may have microvasuclar disease. I did end up with an ICD because I had CT on a stress echo which I didn't have pre myectomy. I also developed significant resting high heart rates and SVT. After multiple plane trips to Cleveland, I was placed on a beta blocker. I had been on Atenolol once before and did not do well with it. I have asthma, so no one wanted to try anything again. Finally Dr. L and I had a discussion about the risk/benefits and I started Toprol XL. It was my miracle that finally happened almost 2 years to the day after my surgery.

                          Don't give up !!!
                          Onward and Upward !

                          Diagnosed 4/07 HCM with fixed & dynamic obstruction
                          Myectomy with resected cordonae tendonae 4/08 CCF
                          ICD 10/08

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                          • #88
                            Re: I have had the following procedure...

                            The same thing happened to me. I had a myectomy and mitral valve repair 7/13 and felt much better for several months after. Then, around the 5th month felt all my symptoms come back and then some. Stress echo said my obstruction/gradient is greater than ever at 170+. Am on 100mg of toprol xl/ day. Can't really do much of anything except rest. Bummer! I feel the same way you do - I read so many accounts of improved functioning but my outcome wasn't good. Sad face.
                            After years of being told I was anxious and depressed, finally diagnosed in 2012
                            Myectomy and Mitral Valve repair, UCLA, July 2013

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                            • #89
                              Re: I have had the following procedure...

                              Hi everyone! I know I haven't posted much since November 2013 I had a septal myectomy, a maze procedure, and a little trim of the mitral valve. I think maybe I've been waiting, and a lil disappointed that I still have some symptoms post myectomy, and I was expecting better.
                              Good news is I haven't been in a-fib since! At least not that I know of. I definitely knew back then when I was in afib. 😝 but I do still have shortness of breath. To the point where it affects me in work, as well as when I get busy at home. I have been switched from metoprolol to atenolol by Noreen at Tufts (Dr. Maron was out of town) to see if this helps. I also take a baby aspirin, atorvastatin, furosemide,and warfarin. Oh, and omeprazole for acid reflux. 😁 It's only been 3 weeks, or so, so I guess I'll give it a bit more time. Need to do something tho! (Preferably get off all these damn MEDS! &#128514 But that's my story in a nutshell! ~~~~~ Kev
                              Dx'ed 4/11 with "left ventricular hypertrophy"
                              Re-dx'ed by a new cardiologist 4/13 at age 51 with possible HCM.
                              Went to Tufts 7/13 and verified HCM with obstruction.
                              Going in for a Myectomy and a Maze procedure on 11/13/13

                              Comment


                              • #90
                                Re: I have had the following procedure...

                                1/2010, Cleveland Clinic, Dr. Lever, surgeon was Smedira - Septal Myectomy, Mitral valve repair, artificial chordae, papillary muscle repair (two fused together to make one functioning one), and a pacemaker/defib. implant.
                                I feel better than prior to to surgery, but not great. I skateboard some, but only for short bursts. I have zero endurance, still have some light-headed spells, irregular heart beat, A-fib, and will spend an entire day off just sleeping to "catch up" on the rest I need. I take Atenelol, which has it's benefits, obviously, but slows my metabolism, and causes some balance issues with the inner ear. I always feel like I've had a beer or two.

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