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Best location for a myectomy in TX


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  • Best location for a myectomy in TX

    I live about an hour NW of Austin, TX. I am looking at having a myectomy done and am trying to figure out the best location. I was told The Mayo Clinic or Clevland Clinic in Houston. Austin is not reccomended by my doctors. Anybody out there have any input?

  • #2
    Re: Best location for a myectomy in TX

    According to the guidelines (available on the home page here) high volume programs are the only ones that should be doing myectomies... and there are simply no programs that meet the standards set forth in Austin... It is best to travel to care. Call the office if we can help!

    Good Luck!
    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)


    • #3
      Re: Best location for a myectomy in TX

      I live in the DFW area, and like you, I would have preferred to have had my surgery closer to home. Notwithstanding the many great cardiovascular surgeons in the DFW area, my cardiologist recommended that I go to a Center of Excellence for my myectomy even though he said mine would likely be fairly routine. Before going to the Mayo Clinic, I interviewed several of the most highly recommended local cardio. surgeons, and they each conceded that they only performed a few myectomies each year. When I spoke with Dr. Schaff at Mayo, his wealth of experience in performing myectomies was impressive and very reassuring. Dr. Nishimura at Mayo was equally as impressive, and extremely personable, as were all Mayo staff members during the pre-op testing phase. For my piece of mind, there sure seemed to be a big difference between a surgeon (and other important medical professionals) who perform 20-30 myectomies each month, as compared to one who only does a couple each year.

      At the end of it all, I was on a plane from Rochester back to Texas 4 days after surgery, and I was working half-days 13 days after surgery (I'm an attorney, so I wasn't having to do anything physically demanding), and back full-time 18 days after surgery. I know I would make the same decision all over again without any reservation.

      I wish you all the best and a speedy recovery.

      Dx at 40 - currently 44 and counting
      Septal Myectomy on 2/12/09 at Mayo Clinic in MN (Dr. Schaff)
      Last edited by Texectomy; 01-16-2012, 09:25 AM.


      • #4
        Re: Best location for a myectomy in TX

        I grew up and lived in the DFW area most of my life. I didnt move to Ohio(3 hours away from Cleveland Clinic) until May of last year. Being mis diagnosed all those years and finally moving to a place which found and corrected my problems was a wonderful thing.
        Diagnosed HCM October 2011(obstructed)
        ICD Implanted 10/14/2011
        First trip to Cleveland Clinic 11/16/2011
        Septal Myectomey 12/14/2011
        A better life started 12/15/2011


        • #5
          Re: Best location for a myectomy in TX

          Here's a listing of the HCMA's Centers of Excellence - But do call the office to see which one works best for YOU.

          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 . . .


          • #6
            Re: Best location for a myectomy in TX

            Texectomy - Did you mean Dr. Schaff?
            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.


            • #7
              Re: Best location for a myectomy in TX

              Cynaburst - thanks, you are correct.


              • #8
                Re: Best location for a myectomy in TX

                I had my myectomy a year ago at Mayo with Dr. Schaff - amazing surgeon.
                I have also heard many great reports on the Cleveland Clinic.

                Where ever you choose to go, you most definitely want to go where they do this ALL the time.

                I live in NJ, so I had to fly to Rochester as well and a week after surgery was on a plane home. (It would have been the day after my release from the hospital, but there was a little red tape to go through with the airline).

                I believe I also heard that Dr. Schaff goes to the Mayo Clinic in Arizona to perform myectomies occasionally.
                Just another, closer, resource.
                Diagnosed with HOCM 11/03
                A-Fib 4/09
                Ramipril 2.5mg
                Baby Aspirin

                Myectomy 1/3/11 - Mayo Clinic - Dr. Schaff
                Maze Procedure 1/3/11 - Mayo Clinic - Dr. Schaff

                Mom to two crazy dogs


                • #9
                  Re: Best location for a myectomy in TX

                  I had mine at the Wash U/Barnes Jewish in St. Louis. I know it is a pain to travel, but getting to docs who are good at it is so important.

                  Dr. Keith Mankowitz diagnosed and was exceptional in his understanding of the condition, and Dr. Ralph Damiano is one of the pioneers of the "mini-sternectomy" that leaves a scar that is tiny compared to some.

                  This is one of the centers of excellence, and I have to confess that I was impressed that these guys were at an age where they have lots of experience but are still in the prime of their careers.

                  Best of luck, and keep us informed.

                  Kansas City


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