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marlene Find out more about marlene
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  • myomectomy

    Guess what, everyone: I just had a myomectomy (I'm apical) on July 22. According to records, there have only been 15 of these surgeries done, but I'm the first one to be done TOTALLY without blood - not even using my own stored blood!
    marlene \"...from the bottom of my heart\" (apex)

  • #2
    Re: myomectomy

    Congratulations, Marlene!

    Glad to see you back on the board! Bloodless is a great accomplishment. Hope you have a speedy recovery and you see improvement everyday.

    Sharon

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    • #3
      Re: myomectomy

      what does apical mean?

      Congratulations, I hope you are feeling fairly well by now!!!

      Comment


      • #4
        Re: myomectomy

        Marlene, Hope you are feeling much better, well on the road to recovery. Keep us posted with progress reports. I don't remember if you told us where you would be having this done. Do you mind telling us? Linda

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        • #5
          Re: myomectomy

          Apical means that the hypertrophy is down at the bottom of a ventricle instead of at the septum (the wall that divides the two ventricles). Myectomys are rare for this kind because the hypertrophy is not blocking the mitral valve. However, the chamber is much smaller than it ought to be, so the contractile ability of the heart is lessened.

          S

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          • #6
            Re: myomectomy

            Sarah:
            Seems to me the problem is not in the systolic phase but, rather, a diastolic dysfunction (my heart will not relax enough to fill with blood between beats and yet contracts too hard to try to compensate for the ineffeciency). Medication and a pacemaker failed to improve this.
            marlene \"...from the bottom of my heart\" (apex)

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            • #7
              Re: myomectomy

              Linda and others:

              Thankyou for your interest and well-wishes!

              I had the myomectomy done at Good Sam. Hosp. in L.A. My surgeon (an extremely skilled & consciencious one, I might add) was Dr. Manuel Estioko. He does extremely difficult surgeries - a lot of "re-do's" and others that no other doctor would touch. And all without blood!!!

              I was his first myomectomy. Dr. Schaff at Mayo, Rochester (who has developed this surgery and done the other 14) guided him online thru the procedure. It was a total of 11 hours start to finish. (Very meticulous, I would say!) A complication in 2 of the procedures done previously was damage to the mitral valve. But I came thru great! In fact, I felt ready to leave the hospital in 4 days (but stayed a total of 6).

              The hospital is going to do a feature on me in their newsletter. I'm not sure when it will come out, but maybe I could share it with all of you if you're interested.

              Thanks again!
              marlene \"...from the bottom of my heart\" (apex)

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              • #8
                Re: myomectomy

                Marlene, Isn't it amazing what modern technology can do! Sounds like your doc covered all bases in preparation. It's important to have a good tutor, learn all about what could go wrong and how to prevent the most common probs. After 11 hours, imagine how exhausted everyone must have been, your family included! Linda

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                • #9
                  Re: myomectomy

                  Congratulations !
                  That sounds like a great surgery. You mentioned diastolic dysfunction..does a reduction in muscle size really help with relaxing the heart?
                  During my trip at mayo, I was told that in a non-obstructive HCM they rarely do myectomy. And it is done only if the ventricular cavity had become very small.
                  I have non-obstructive HCM, and right now things seem normal, but I am wondering if I will need a myectomy ever. Because, for plain HCM, the options are limited. Medication and pacemaker.. thats it.
                  Ketan Thanki

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                  • #10
                    Re: myomectomy

                    Keton:

                    I'm not an expert by any means, but what I understand is that no, a reduction in muscle size will probably NOT help the heart to relax. In my case, the ventricular cavity HAD become so small and, with the relaxation problem, was unable to fill with blood. Therefore, the blood was backing up into my lungs and causing alot of pressure. Which is why I was so short-of-breath all the time. (more to follow)
                    marlene \"...from the bottom of my heart\" (apex)

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                    • #11
                      Re: myomectomy

                      The world is changing befor our eyes...
                      I would like to share a little more of the story Marlene - as I do think it will help others.
                      About 1 year ago I spoke to Marlene - who was feeling very poorly and was told some things about her condition that were misleading and not very promising. She went for a 2nd opinion (or it may have been a 3rd) to a specialty center. It turned out that she was Apical HCM (thickness at the base of her heart only - no obstuction). The surgeon she mentioned above had been attempting some "myectomy like procedures" on those with apical HCM who were very symptomatic (please note this is a very small population - but the people are out there). Anyway Marlene was offered the procedure - however Marlene has beliefs that make recieving donated blood simply not an option, further she did not wish to use her own blood either. The last I had heard from her was several months ago and she was seeking out other options.
                      Now we hear the "rest of the story" as Paul Harvey always says....

                      Marlene now for the $100,000 question... how are you feeling???

                      Wishing you a speedy recovery!
                      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


                      • #12
                        Re: myomectomy

                        Marlene - Do you live in Los Angeles?

                        I thought I would tell you that I am also a patient of Dr. Estioko. He and Dr. David Cannom implanted my ICD in February.

                        I thought he was very good, and had heard good things about him before my surgery. Mine was much less complicated though.

                        Glad you are doing well. By the way, how did you find Good Sam?

                        I thought it was great.
                        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


                        • #13
                          Re: myomectomy

                          Cynaburst:

                          No, I live in Payson, AZ (small town in mountains). I thought Dr. Estioko and his team as well as Good Sam were fantastic, too! (Although that hospital certainly needs an upgrade on its A/C unit!) I had alot of help in locating Dr. Estioko.
                          marlene \"...from the bottom of my heart\" (apex)

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                          • #14
                            Re: myomectomy

                            Lisa:

                            I'm doing very well, thank you! So well it's kinda scary - I have to discipline myself to rest! I have had several major surgeries in the past & have had a difficult recouperation with each. This one seems too easy!

                            By the way, I have been having alot of trouble posting messages here. They keep getting wiped out when I push "submit" or just blank out when I'm composing. Sure have wasted much time re-doing!
                            marlene \"...from the bottom of my heart\" (apex)

                            Comment


                            • #15
                              Re: myomectomy

                              I wanted to mention also that Dr. Estioko was not too keen on doing this surgery. Even tho he felt confident he could do it, he was not interested in doing unneccessary surgery. He carefully studied the "before and afters" of the previous patients before he would consent to doing it. He found that overall there had been about a 70% improvement in those having the myomectomies. (Lisa, correct me if I am wrong here calling these "myomectomies" instead of "myectomies". That is what the doc called it.)

                              Dr. Estioko told my husband he was surprised just how bad my hypertrophy was - practically total obliteration. Of course, my records he had were from a year ago. I know it's unusual to progress further when you are older (I just turned 50), but it seems my family is late-onset or, at least, late at becoming very symptomatic.
                              marlene \"...from the bottom of my heart\" (apex)

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