If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Best location for a myectomy in TX

Collapse

About the Author

Collapse

Terdle We appreciate life for what is. You never know what's going to happen day to day, so u should live that way. Make sure the people closest to u know how important they are. We're truly blessed to have such a wonderful family! Best friends and partners in life as well! couldn't get any better!We choose...to live by choice, not by chance;to make changes, not excuses;to be motivated, not manipulated;to be useful, not used;to excel, not compete.We choose self-esteem, not self pity.We choose to listen to our inner voice,not the random opinion's of others. Find out more about Terdle
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • 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!
    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


    • #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.

      Comment


      • #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

        Comment


        • #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.

          https://www.4hcm.org/hcm/finding-an-...or/427832.html
          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


          • #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.

            Comment


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

              Cynaburst - thanks, you are correct.

              Comment


              • #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

                Comment


                • #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.

                  Bob
                  Kansas City

                  Comment

                  Today's Birthdays

                  Collapse

                  Working...
                  X