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How often do you have a myectomy and valve replacement?

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  • How often do you have a myectomy and valve replacement?

    How often do they have to do a myectomy and mitral valve replacement?
    I'm hearing that you need one or the other in some hcm articles and in others it states that you may need both. Shouldn't this be obvious when
    the myectomy is being done? I'm just a little confused so please give me
    your input.

    If youv'e had both please comment.

    Thanks,

    Margie

  • #2
    hunh

    Dear Margie,

    I'm not sure exactly what you are asking. About 20-25% of HCMers may need a myectomy at any given time. If your septal wall is thick at the top, it will block the mitral valve from working properly. Also, many HCMers also have extra large mitral valves or mis-shapen ones.

    While they can tell a lot from an echo, they can't always tell if they can repair the valve or if they just have to give you a whole new one until they get in there and see what it looks like for real.

    If I haven't answered your question, please let me know.

    S

    Comment


    • #3
      Hi there -

      I wanted to throw my concern into this ring as well, although it it concerns only the septal myectomy. I was told that my son's future could bring several possibilities in terms of his care. One possibility was that of undergoing a septal myectomy, however, it would depend on the location (upper or lower septum) and severity of his septal obstruction. I was also told that even though a septal myectomy was done, the thickness would just "grow back" causing the need for future myectomies and/or other treatments. Is this true? Does a septal myectomy just "buy time"? How many times can a septal myectomy be repeated?

      Thanks,
      Mom of Keanu
      4 years old (will be in March)
      Dx at 2 days old with Biventricular hypertrophy
      Dx at 6 weeks with HOCM
      Dx at 5 months with V-tach
      Dx at 3 with Noonan Syndrome

      Comment


      • #4
        Myectomy/Valve F/U

        Sarah,
        I'm asking do they do both procedures. The myectomy and valve replacement together. Is it myectomy or valve or can both be
        needed?
        Thanks,

        Margie

        Comment


        • #5
          It is not common, but it does happen. In some cases the myectomy is done and the MV repair is done at the same time - replacement may be done as well...in other cases the repair/replacement is done months or years later - it is not common at all... I am aware of a handful of cases like this...as compaired to 100's of myectomies over the past 7 years.
          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


          • #6
            hi margie, i had a myectomy last july. i was told i needed two bypasses,and two values as well as myectomy. lisa told me probably the myectomy would take care of valve problems. dr. asher and dr. smedira in cleveland both told me that when i went to the sospital. they would not know for sure until they were in the surgery, i had myectomy and two bypasses. take care, john

            Comment


            • #7
              Hi Margie,

              I am one of those rare few who needed the myectomy and mitral valve repair. My surgery was at Cleveland Clinic, July of 2001. Dr. Lever and Dr. Smedira knew prior to surgery that the mitral valve would need repair or replacement. I was happy they could repair the valve. It's my understanding that the septal wall rarely grows back, so I don't expect to have to have this procedure again. Hope this helps,

              Elizabeth

              Comment


              • #8
                Hello,

                My daughter had to have the myectomy when she was 5. During the surgery, they discovered her mitral valve was not in the correct place and turned wrong so her tendenea cordea was obstructing the aortic valve. Since she was so small they tried to wait 5 years to put a larger replacement valve in. We didn't make it 5 years, only 1 1/2 years so she was almost 7 when she had the valve replacement. She is now almost 12 and since that replacement her HCM has been wonderful. No new obstruction and no re-growth in her myectomy area. I hope this stays the case until she is much, much older.

                My son had the myectomy in his right ventricle septum opposite the tricupsid valve. This area has not regrown, but he is now having obstruction in the left ventricle just below the aortic valve.

                I guess my point is that the myectomy areas that my children's surgeries were at have not "regrown", but other areas (son) have.

                I hope this helps.
                Michelle - mom to Krista and Tyler both HCM
                Krista surgeries: 3/97 myectomy, 2/99 mitral valve replacement
                Tyler surgery: 1/98 myectomy

                Comment


                • #9
                  Margie,

                  It is my understanding that a myectomy should only need to be performed once. Current data (only about 20 years) show no return of the obstructive conditions that were present prior to the surgery.

                  As far as mitral valve replacement, my doctors at CCF told me that they evaluate each individual during the myectomy procedure and make a decision at that time. They tend to be cautious about valve replacement however.

                  Bob Hartwell
                  Cleveland Myectomy Crew
                  Member since November 2002

                  \"Chance favors the prepared mind!\"

                  Comment


                  • #10
                    Myectomy/valve replacement

                    I have seen a lot on the board about mitral valve repair/replacement.
                    I had a Myectomy at Cleveland clinic in Feb.2001. As it turned out, they also had to replace my aortic valve ( now have a Bovine valve)
                    I didn't know this before surgery and they didn't either. Just wondering if anyone else has had an aortic valve replacement and how long ago.
                    PATSUB

                    Comment


                    • #11
                      Myectomy

                      I am 21 years post myectomy. None of my obstructive disorder has grown back. Even though I am having many other problems with HCM. They still feel the myectomy is a success and will not grow back. they did discover at time of surgery I had a little MV problem, but nothing needed to be done then or since.
                      Midge

                      Diagnosed in 1977, Myectomy in 1981 @ Mayo Rochester
                      ICD&Pacemaker 1996
                      Heart transplant March 19, 2004 @ Mayo Rochester
                      Mom of Kaye.

                      Comment


                      • #12
                        I hate to differ with you, Bob, but I am living proof that it does grow back --after nearly 3 decades.
                        pickaback

                        Originally posted by Robert Hartwell
                        It is my understanding that a myectomy should only need to be performed once. Current data (only about 20 years) show no return of the obstructive conditions that were present prior to the surgery.

                        Bob Hartwell

                        Comment


                        • #13
                          Re: How often do you have a myectomy and valve replacement?

                          Bob is correct...and so is Pickapack...
                          It is rare for regrowth to occure.... but it can happen. In some cases it is due to the age of the person at the time of the 1st procedure, some it is due to an incomplete procedure the 1st time and other...well they just regrow.
                          Of all the people I know with myectomies..and that is a few 100 I know if 2 adults with "regrowth" and 3 kids. The reasons vary for each but it still is very rare.
                          I also know of a dozen or so with the need for a 2nd procedure...in these cases the 1st one was done in a center with limited experience and therefore I do not think the people ever got full relief the first time - therefore I am not counting them in the 5 procedures I mentioned above.
                          Thats my take...
                          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


                          • #14
                            Re: How often do you have a myectomy and valve replacement?

                            Pickapack,

                            I learn something new every day. The procedure is difficult to go through once, I can't imagine having to have a second surgery.

                            Bob
                            Cleveland Myectomy Crew
                            Member since November 2002

                            \"Chance favors the prepared mind!\"

                            Comment

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