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Patrick may need septal reduction..

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Lisa Salberg Find out more about Lisa Salberg
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  • Patrick may need septal reduction..

    Hi all on the old board a new member - Patrick (the wise guy) asked for your input on myectomy as he may soon need one.
    Some of you responded with your stories.
    Judy, Jerry, Bob, John and ther rest of you guys...chime in please and let him know what lies ahead.
    Thank you all!
    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)

  • #2
    Hi Patrick. I had a septal myectomy in Sept.2002 at the Cleveland Clinic by Dr. Smedira. The surgery went well, no complications since then. Looking back I wish I would have been told to expect pain in places besides the incision sight. Near my arm pits and my back and shoulder pain was a lot worse than the actual incision. Also even now in these areas, I still have some pain at times. My symptoms, for the most part, are much improved. It feels great to have some energy again! Hope this helps.
    Obstructive HCM, Pacemaker 1999, Septal Myectomy 2002

    Comment


    • #3
      Hi Patrick,

      Surgery is a scary thing and believe me, I was nervous up to the point that they put me out for the surgery so that will be a normal thing. I had my myectomy done in Cleveland by Dr. Lytle in Novmeber. I had an excellent recovery with no complications. Right now I am pain free except for a little in the incision area when twisting. Nancy was right, during most of the recovery period, pains in my upper body were worse in the muscles of the shoulders and rib cage than the incision.

      Almost nine week post surgery, I am stunned by the things that I can do! Stairs, chasing my kids, I am also in cardio-rehab and I am doing things which before surgery were impossible. As I look back now, I realize what I was missing (not being able to do) because of HOCM. I have such a zest for life that I feel like a new person.

      Bob
      Cleveland Myectomy Crew
      Member since November 2002

      \"Chance favors the prepared mind!\"

      Comment


      • #4
        Patrick,
        I guess I am the 'old-timer' of the myectomy replies. I had my surgery in November of 1999 at the Cleveland Clinic with Dr. Lytle. I was 33 years old, a full-time chemist and a full-time mother (my kids were 8 and 3 at the time).
        I was scared to death to have the surgery. I had always been told how risky the surgery was. I was told at one time that the mortality rate was about 30%. The last I heard it is about 2% in a facility that has experience with this surgery. There are many misconceptions out there, be sure to get the right information before you make any decisions.
        I am very happy that I had the surgery done, my quality of life has improved dramatically. Recovery from the surgery is tough, but well worth the rewards. I had pain in the back of my neck and I thought that I would never be able to sleep through a whole night again. I did not have a reclining chair at that time, so I slept on pillows on the couch. Both the pain in my neck (from the surgery ) and the sleeping problem went away in time. I found that talking to others that had the surgery before me helped me to know what to expect.
        There are many little things that can't be captured in an email. If you'd like to talk, email and I'll be glad to give you my phone number.
        Judy

        Comment


        • #5
          HI all -
          Judy will soon become an official HCMA moderator of this board. Judy has helped many HCMA members pre and post procedure. She knows what to expect and will let you in on as many details as you wish.
          I have long called on Judy to talk new myectomy patients through the process. She has a great deal of knowledge and is willing to share it with others. There are many others of you that have helped others through the process and I hope to see you all active here on this part of the board.
          Best wishes to all!
          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 Patrick,

            Though I can't speak as a person who has had a myectomy myself, my son did. He had his myectomy when he was 6 years old, in 1996 at Mayo Clinic by Dr Danielson. The surgery went very smooth and was a huge success. His recovery was uncomplicated and I was surprised how quickly he bounced back........And I mean that literally! By day 5 we had trouble keeping him from jumping in the hospital bed!

            The results of the myectomy were unbelievable with a huge drop in the gradient! (From 73- about 10) It has now been 7 years and the results of the surgery are still apparent. No gradient and no symptoms from any obstruction


            Good luck!
            Dolly~
            mom to Andrew(HCM) 21 years old
            Diagnosed \'95 age 5
            Myectomy \'96 age 6
            ICD implant \'99 age 9
            First ICD shock (X2) \'04
            ICD replacement surgery \'05 age 15

            *And aunt to 7 year old Kenny who had HCM and suffered sudden death in gym class. (2/20/87 - 4/6/94)

            Comment


            • #7
              myectomy

              I am four weeks post myectomy (at the Clevland Clinic) and feel well enough to have returned to work part time today(sedentary desk job). I was diagnosed about 15 years ago in my early 40's and had very few symptoms until the past 2 years. My pre-op resting gradient was in the 120's and I was often short of breath,wheezy and had daily dizzy spells. Aside from some chest tenderness and soreness I feel much better than I expected to after a month post surgery. No episodes of dizzyness or shortness of breath. NO regrets! Now walking (not running) 30 minutes/day on the treadmill and regaining strength and stamina. Some medicines have been decreased substantially and others stopped entirely.

              Comment


              • #8
                Dennis - It sounds like you have had a good result and that your able to get your life back on track! Sounds great!!! I hope to see you here on the board often sharing your story and experience with others!
                All the best!
                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


                • #9
                  I had my myectomy in December1987. I was 25 years old at the time. Things have been great. I have gotten married, had a daughter and have enjoyed life. I still get tired, sob and can not do alot exercise, but I can live with that. Keep a postive attitude and things will work out great.
                  Life is too short to worry about the trival things in life, So live life to the fullest.

                  Comment


                  • #10
                    myectomy six months ago

                    hi patrick, this is my first time on the new message board. i had myectomy in july at ccf by dr. smedira and also saw dr. asher. im doing ok. i finished my 18 sessions and just got a tread mill today. now if i only will use it. ccf is a great place and i was in hospital for six days after myectomy as well as two bypasses. i was sore but after a few weeks started getting exercise. the steps are much easier and overall im feeling ok. let me know what u are up to these days. and if i can be of any help. peace, john[/b]

                    Comment


                    • #11
                      Thanks guys,

                      Im am concidering the surgery. I played college football and a year at the professional level but alcohol and drugs ruined me. Although those things are long in the past, I am now having the problem with my heart. I have 4 small children that I would like to see grow up. I am concerned however, that I would not be able to excersise any more if I had the surgery. I cant do any of that now anyway, but I would like to as I did all my life up until a couple of years ago. I would like to be able to lift light weights again if possible as I am 325 lbs (of twisted steel and sex appeal) by the way. I feel as if I will have other health problems with my size as it is, if I am not able to exercise along with a diet. What do you guys say?

                      Comment


                      • #12
                        Patrick,

                        I don't know about exercise after myectomy. Others here can help you with that. As far as lifting weights goes, it's not a good thing with HCM. It puts undo stress on the heart. I hope that answers you question.

                        Reenie
                        Reenie

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

                        Comment


                        • #13
                          Thanks! I guess what I mean is after the surgery will I ever be able to lift light wieghts? I used to lift very heavy so I thought maybe I could do a light workout. Keeping the heart rate down and doing light repititions.

                          Comment


                          • #14
                            Originally posted by PATRICK
                            Thanks! I guess what I mean is after the surgery will I ever be able to lift light wieghts? I used to lift very heavy so I thought maybe I could do a light workout. Keeping the heart rate down and doing light repititions.
                            Patrick,

                            I really think that's something you'll have to take up with your doc. I'm not an expert, but I'm under the impression that straining to lift weights is bad judgement and bad for your HCM heart. See, the septum is so thick and when you strain to lift, sometimes oxygen can't permeate the muscle like it should. I think that's how it works, anyway. Sorry I can't help you more.

                            Reenie
                            Reenie

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

                            Comment


                            • #15
                              rehab

                              Please post a new thread asking people to talk about what they can and can't do after a myectomy. I know some people have had rehab after to get back into shape with careful exercise.

                              Everyone I've seen here has been very grateful and much much improved after their myectomy.

                              S

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