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.

Does HOCM Return

Collapse

About the Author

Collapse

atydev Find out more about atydev
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Does HOCM Return

    I recently had my mitral and aortic valve replaced during this surgery they removed the portion of my heart that was thick and not working. My question is does it return? Once it is removed is it gone forever how does this work?
    April
    Mitral & Aortic valve replacement w/St. Jude valve HOCM -myectomy 6/21/04
    EP Procedure 4-19-04 Wolfe Parkinson
    Heart Attack 4-19-04
    Stroke 6-03
    Bacterial Endocridites 6-03

  • #2
    Re: Does HOCM Return

    i Atydev

    Welcome!

    That was my question when I had my first myectomy in the early seventies. At that time, I was going to NIH where basically they were doing research on people with HCM. The doctor that performed my surgery told me "it was highly unlikely". You have to remember they did not have the knowledge as they have now about this heart disease. I had my second myectomy in 2000. Do they do surgery different now that the thickness that is removed does not grow back? Gee I hope so, but I have no data to confirm this. Were you diagnosed with HCM prior to your mitral & aortic valve replacement?

    I know others will reply to your post. It is a very good question.
    Esther

    Comment


    • #3
      Re: Does HOCM Return

      April,

      Your post is interesting - and my goodness have you had your share of issues

      This may be a matter of terminology - You said "HOCM removed" - that is not possible. You may have 'obstruction' removed but hypertrophic cardiomyopathy is a genetic disorder and is all thoughout your heart.

      Regarding the removing of obstruction and will it come back - that is not always an easy question to answer and really depends upon where your procedure was done and if they took ample amounts of tissue and if in fact the mitral valve needed to be replaced. It is not very common to see MV's replaced, although it does happen. In an adult in the best centers myectomy rarely needs to be redone. In the case of alcohol septal ablations they are far more often to need a 2nd or even a 3rd procedure to eliminate obstruction.

      Welcome to the message board and I hope we hear from you soon!

      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


      • #4
        Re: Does HOCM Return

        Just an FYI: Having HCM means that all of your heart muscle is not quite right --the heart is supposed to have nice, long, smooth cells that allow the current that makes it beat run through it easily. In HCM, those cells are all messed up--which is why parts of the heart get too thick. The HCM is not just in the thicker parts, it is the entire heart with some bits "worse" than others.

        It is very unusual for the bit they cut away to grow back and you shouldn't worry about it. They will do echos every year to see how your heart is doing and they would be able to see if it did start to come back.

        take care,

        S

        Comment


        • #5
          Re: Does HOCM Return

          Originally posted by Lisa Salberg
          April,

          Your post is interesting - and my goodness have you had your share of issues

          This may be a matter of terminology - You said "HOCM removed" - that is not possible. You may have 'obstruction' removed but hypertrophic cardiomyopathy is a genetic disorder and is all thoughout your heart.

          Regarding the removing of obstruction and will it come back - that is not always an easy question to answer and really depends upon where your procedure was done and if they took ample amounts of tissue and if in fact the mitral valve needed to be replaced. It is not very common to see MV's replaced, although it does happen. In an adult in the best centers myectomy rarely needs to be redone. In the case of alcohol septal ablations they are far more often to need a 2nd or even a 3rd procedure to eliminate obstruction.

          Welcome to the message board and I hope we hear from you soon!


          Lisa

          I did not know that this was my whole heart no one had ever told me that. It was found during a TEE preparing me on my way to Mitral and aortic valve replacement. Or maybe it was the Ech or EKG not sure. This has been so over welming. I new I had mitral valve reg. got and Wolfe Parkinson. All I was told was born with. I got endocridites last year and the rest was found from there. I knew I had issues chalked it up to stress or out of shape even though I was very active. I had this done 6 wks ago during a double valve replacement. They removed the thick part of the heart. I had it done at a teaching hospital in Shreveport Louisiana -LSU Shreveport although my surgeon is suppose to be the best in this area. 25 yrs behind her and does all the transplants in this area also.
          April
          Mitral & Aortic valve replacement w/St. Jude valve HOCM -myectomy 6/21/04
          EP Procedure 4-19-04 Wolfe Parkinson
          Heart Attack 4-19-04
          Stroke 6-03
          Bacterial Endocridites 6-03

          Comment


          • #6
            Re: Does HOCM Return

            April,

            This is all going to be a bit to digest - HCM is a complicated condition. Many people with HCM are also told they had WPW - however sometime with HCM you also have some "conduction" system problems that look like and may actually be WPW.

            How old are you? I would suggest you call the office on Tuesday and we can talk things over a bit better then can be done on a computer.

            Take your time read over the website and collect your question.

            Take care,
            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


            • #7
              Re: Does HOCM Return

              Originally posted by Lisa Salberg
              April,

              This is all going to be a bit to digest - HCM is a complicated condition. Many people with HCM are also told they had WPW - however sometime with HCM you also have some "conduction" system problems that look like and may actually be WPW.

              How old are you? I would suggest you call the office on Tuesday and we can talk things over a bit better then can be done on a computer.

              Take your time read over the website and collect your question.

              Take care,
              Lisa
              I am 33 I have felt the WPW was a miss diagnosis. When they went in on 4-19-04 they said they could not find what they were looking for. Although they did cause me to go into V-fib. It took 2 shocks to bring me back one at 200 joules and one at 300 joules. I spent 3 days in the hospital when they said it was an outpatient thing. I was suppose to come home with a difibulator and missed out on that wonderful thing....thank God. I was told about the mitral valve reg. then but on atenolel that did not work so I was put on flecinide and told I had WPW. So I have doubted I had it since 4-19 although I was told it does not always show up and the EP procedure may have to be repeated to find the conduction problem.
              April
              Mitral & Aortic valve replacement w/St. Jude valve HOCM -myectomy 6/21/04
              EP Procedure 4-19-04 Wolfe Parkinson
              Heart Attack 4-19-04
              Stroke 6-03
              Bacterial Endocridites 6-03

              Comment


              • #8
                Re: Does HOCM Return

                April, I hope you do call Lisa this week. It sounds like you really need to be seen by a specialty center.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: Does HOCM Return

                  April

                  Hang in there......Give Lisa a call she will help you out with her vast knolledge, she is a great lady as you will soon find out

                  Shirley
                  Diagnosed 2003
                  Myectomy 2-23-2004
                  Husband: Ken
                  Son: John diagnosed 2004
                  Daughter: Janet (free of HCM)

                  Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                  Comment

                  Today's Birthdays

                  Collapse

                  Working...
                  X