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  • Husband needs surgery in a couple of months have questions?

    Hi All-
    It has been awhile since I posted, probably a year. We found out my husband has HCOM about 2 years ago and like everybody else it has taken awhile to get used to the idea. There is no real evidence of family history other than his grandfather whom died at 99 had enlarged heart with a pace maker.

    We found out last week from Dr. Asher down in Weston, Fl that he needs a myectomy. He has obstruction and needs his mytrovalve (sp?) repaired (not replaced hopefully).

    I have read many of the pre and post oped posts and they have helped to answer my questions. The couple of questions I do have are; what are the chances of having to have surgery again? How normal of a life do you lead years after surgery?

    Is is so scary I thought we would have a least 10 years before we would have to worry about this. We have two small kids and I also worry about them.

    Anyway, thanks for the help.

    Angela

  • #2
    Angela,

    I had a myectomy at Cleveland August 2004 at the age of 49. I have no regrets. I live a totally normal life & I feel better then I have in years. The operation was really not that bad and you will be surprised how well he will be doing in just 3-4 weeks. By week 7-8 you'll be on the board bragging about him.

    Myectom, no regrets.
    Stuart Schwartz
    Cleveland Myectomy Club
    August 31, 2004

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    • #3
      Husband needs surgery in a couple of months have questions

      Angela,

      I had my myectomy at CCF Aug. 2000 at age 54. Although I am not the Olympic candidate that I had always wanted to be, life is still enjoyed! Learning one's own limitations is the key, whether it be age or ability. Age is acquired, ability practiced.

      Blessings,
      Dorothy

      Diagnosed 1996, Myectomy Aug. 2000, 3 Radio-frequency ablations for a-fibs 2003-2005.

      Comment


      • #4
        Angela, I do believe chances are low for the need of a 2nd myectomy. It's not unheard of, yet uncommon. The need for surgery for other reasons (bypass, etc) of course is another story.

        I had a myectomy July 2005 and feel wonderful. I hosted a 5 year old outdoor bonfire birthday party for 50 people, just 7 weeks post op. So, you ask is my life normal? I would say very normal. I exercise, have lots of energy, very few limitations, chase 2 small children, work part time. I do everything.

        I'm glad I had it done.
        Best wishes, Laura
        Dx: HOCM 1991, Myectomy/Mitral Valve Repair @CCF July 19, 2005. Wife and Mom of two: ages 5 and 3.

        Comment


        • #5
          Thank you for the responses!!!!!

          I thank all of you for your encouraging words and experiences.

          I spoke to Stuart today at length and he answered a lot of my questions and put me at ease about the up coming surgery.

          The interesting thing is Stuart is the one who told us about Dr. Asher 2 years ago. We are in Florida and it is a 5 hour drive. I don't know where we would be today with out Dr. Asher. Probably up in Cleveland every other month!! Thank you Stuart!

          Thanks again for the support. I'll keep everybody posted. I'm sure I'll need some calming down as the surgery date gets closer.

          Angela

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          • #6
            Angela - Wishing you and your family all the best! Linda

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            • #7
              Angela,

              You will get a mixed bag of responses here. Some feel great after myectomy and others may simply have some improvements but not all that they wished for or expected.

              So there are many variations. I do not wish to disregard the feelings of some here who have had a return of symptoms or had to go on to further interventions/ surgeries or are at the point of being monitored for future care decisions. The outcome of any surgery can only be predicted based on each individuals past performances before surgery and measured improvements post surgery. Not a majority of people seem to stick around here on a regular basis, long term if they are doing real well, after a few years, they seem to pop in only intermittently with updates. Lisa will know of such #'s from phone calls and conversations. By years later , do you mean 10 ? I do not know anyone 10 years out here. I am 2 years, 3 months out . There are statistics and if I recall , the majority do pretty well and go on to live a fairly normal full life.

              I think it is safe to say that if quality of life is not there, lifestyle is compromised and the option of surgery is offered, it would be a good choice,I personnally went for it and am glad I did. I have no regrets. However , my life is no where normal compared to 52 year olds that I know. It is however much improved from what it was.

              I wish you and your family the best as you face these decisions.

              Pam
              Dx @ 47 with HOCM & HF:11/00
              Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
              Lead failure,replaced 12/06.
              SF lead recall:07,extracted leads and new device 2012
              [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
              Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
              Genetic mutation 4/09, mother(d), brother, son, gene+
              Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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              • #8
                post myectomy surgery

                don't worry too much! i HAD A MYECTOMY MARCH 10 2005 AT THE AGE OF 34 AND FEEL LIKE I'M 25 AGAIN.MARRIED WITH A DAUGHTER 4 YEARS OLD,SCARED IN THE BEGINNING BUT IT WAS WELL WORTH IT.I CAN RUN AND HELP MY DAUGHTER LEARN TO RIDE A BIKE INSTEAD OF WATCHING

                Comment


                • #9
                  On February 21st it will be exactly 10 years since my son Andrew had his myectomy! (Wow, has he ever come a loooooong way!!)

                  When Andrew had his myectomy in 1996 his resting gradient was at 71.
                  One week post surgery it was at 11.
                  Currently, (10 years post surgery) it is around 14.

                  I feel that is a very good outcome with very long lasting results!! One also has to consider that Andrew was only 6 when he had his myectomy and he has recently gone through puberty and all the growth spurts and changes the body normally goes through with puberty, yet he still has not had a big increase in obstruction! I would definetley say that his surgery was a huge success and worth every bit of it!!

                  His septum has continued to increase considerably, from 21 mm in 1996 to 31 mm currently, but his obstruction/gradient is still very mild.
                  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)

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                  • #10
                    Well ladies,
                    Particularly Pam and Dolly and Rocky. It is great to see you're still out there telling it like it is. (Hadn't realized I've missed you all so much.)

                    Do you guys realize how comforting it is to be able to talk to somebody whose 'been there'? I do not consider myself a particularly religious man, but you guys are sure out there doing G-d's work. I love each and every one of you.
                    Burt

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