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New Member Facing A Decision???


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TONYD Find out more about TONYD
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  • New Member Facing A Decision???

    Hello Everyone;
    I'm a 45 year old HOCM patient and a new member of HCMA as of Friday evening. After reading many of your postings, I felt as if I've entered into a society of extrodinary people with a strong cause and a common thread to share and grow with each other. Boy, was I impressed! Well if I may I would like to share my story and maybe ask for some feed-back as I am facing a most difficult decision.........
    I've been diagnosed since 1995 and through the help and research of a dear friend found a wonderful and brilliant doctor at the Brigham and Womens Hospital in Boston, MA (Dr. Christine Seidman). We are very fortunate to live in a country where we can find and visit doctors like Dr. Seidman whose only concern is that of the best of care for the patient and their families. After several drug trials, and a nasty bout with atenalol, we've come up with a combination that led to some relief (Verapamil and Norpace). In 1997, I was implanted with a Medtronic Dual Chamber Pacemaker and had some luck for a while with the help of pacing.
    In March of this year I was admitted into the hospital with CHF and have had little relief of symptoms although I now take a diuretic (Torsemide) twice a day to help with pulmonary edema. It was then recomended that I consider Alcohol Ablation to help reduce my obstruction as it is the least invasive of the procedures. However, last week I had the great fortune to visit another wonderful doctor at the Cleveland Clinic ( Dr. Harry Lever). After a full day of testing and unhurried questions and answers Dr. Lever has recomended a myectomy over the ablation procedure to reduce my obstruction. I must tell you that Dr. Lever and his staff are wonderful, sincere, extremely caring people who understand the trials and struggles experienced by HOCM patients. (It was Dr. Lever's suggesetion that I check out your Web Site!)
    The final choice as to Ablation vs Myectomy is still weighing on me and I would welcome any support or information to help with this extremely difficult decision.
    Thank You for letting me share my story......
    Your site is truley wonderful keep up the great work!!!

  • #2
    Re: New Member Facing A Decision???

    Welcome to the site!
    You have seen some great doctors. You have a big choice to make regarding your septal reduction. I know others here on the site can share with you there thoughts and experience with you.
    Be well and welcome again to the site!
    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)


    • #3
      Re: New Member Facing A Decision???

      Tony, did Dr. Lever tell you the reason why he recommended the myectomy over the ablation? I think that would be important information to consider. There are many people on this list that have had good luck with both procedures and I hope you hear from them. Kathy


      • #4
        Re: New Member Facing A Decision???

        Hi Kathyn2,
        Thank you for replying so quickly to my posting. Dr Lever is suggesting the Myectomy for a number of reasons: my age and general good health, the size of my obstruction he feels would be remodeled more correctly with surgery than with ablation and finally the long term track record of surgery is more proven than ablation. It still is a difficult choice ablation seems minimally invasive and recovery sounds much shorter but surgery sounds more definitive but the recovery and inpact of surgery certainly are greater...
        Thank You,


        • #5
          Re: New Member Facing A Decision???

          Dear Tony,

          Dr. Lever is one of the best and if he thinks that your septum needs some fancy footwork, so to speak, --and I were you -- I would take his advice. You summed up the key differences between ablation and myectomy very well. But it sounds like, in your case, the myectomy would be the best way to go. Yes, recovery would be longer --but how do you weigh that against having your heart made the best it can be?

          My two cents.

          take care,



          • #6
            Re: New Member Facing A Decision???

            Tony, I just want to add that I wish you the best of luck. I know that this decision isn't one that you can take lightly, but I agree that if Dr Lever thinks that myectomy is the best choice for you, then I would go for it. Please keep us posted.


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


            • #7
              Re: New Member Facing A Decision???

              Hi Tony,

              So glad that you found the HCMA to help you out not only during this 'decision time' but also for any of your other HCM support needs!

              I must tell you that I am a huge 'fan' of Dr. Lever's and all of the staff at CCF. Dr. Lever has been my specialist since June 2002 and I am a myectomy alumni of CCF (surgeon: Dr. Smedira) from August 2002. (I'm not surprised he offered up the HCMA website to you, he is a strong supporter of it in many ways!)

              What a challenging decision that you have before you, sometimes I think being given a choice may be harder that not having one at all! As you have no doubt begun to find out there are many pros/cons to both albation and myectomy. As only having had experience with myectomy, I can only speak to it and it's process/recovery/benefits. There are many posts that you can locate through the search feature that will give you personal experiences with both procedures and their respective success within the site that may assist you in your decision.

              For me, I was not a candidate for ablation only the myectomy however, I too was given a moment of 'decision'. We had tried beta blockers to alleviate the symptoms (I topped out at 200mg of Toprol a day) and I was still having problems. The doctor gave me his reccomendation for myectomy but awaited my 'go ahead' agreement - this was tough to say to him but my family and I agreed I had no other options and I wasn't really 'living' life. What I'm trying to say is that if Dr. Lever suggests one procedure over another for you it is because he has taken the time that you mentioned from your visit to evaluate everything and give you his best, most educated opinion. That in itself will probably carry a great deal of weight in your decsion.

              All the best,
              Lynn Stewart
              HOCM 4/2002
              Cleveland Myectomy Crew 8/2002


              • #8
                Re: New Member Facing A Decision???

                Hello Tony - I also was first diagnosed around age 40, about 15 years ago. I did OK until 2 years ago when my symptoms worsened significantly. I went to the Clevland Clinic last fall for a consultation in Oct 2002 and with the confident advice of Dr. Lever I had a myectomy on Dec.18. I was home by Xmas and visited with friends on N.Y. eve. After a month of boring recovery I was back to my sedentary desk job. My symptoms are now nearly nonexistant and I am enjoying washing my cars,gardening and bicycle riding. I am very pleased with the results and the care I received at the CCF. I'm only 2.5 hours drive time from Cleve. so my choice of location was easy.Initially I was hoping to receive an ablation but Dr. Lever clearly convinced me of the value of a myectomy for me. I've had no regrets. Good Luck


                • #9
                  Re: New Member Facing A Decision???

                  Hi Tony
                  Welcome. You've come to the right place and I think you summed it up nicely of the feeling you felt about this board. Everyone is so caring here and we all have the same thing in common HMC. I've learned a lot since joining. Everyone is so knowledgable. Good Luck with your decision. I feel like you may have already made your choice. Follow your heart and you will never go wrong.


                  • #10
                    Re: New Member Facing A Decision???


                    I am 45 and had thought I had the same decision until I went to the Cleveland Clinic. There they also found some valve issues, so the myectomy was the way to go. I know this is major surgery, but it works and the Cleveland success rate is fantastic. I know I am very happy I had the surgery last August.

                    Good Luck!



                    • #11
                      Re: New Member Facing A Decision???

                      hi tony, i did not have option but needed myectomy. also two bypasses, and they thought two valves. dr. asher, at ccf was great and dr. smedira did the surgery. after myectomy the valves worked ok. ccf is great place and i know both dr. lever and asher are tops. as are the surgeos, i was pleased with dr. smedira. if you want more info on ccf, let me know. john


                      • #12
                        Re: New Member Facing A Decision???

                        Hey Tony,

                        I am with ya. I just made the decision last week, surgery is in less than 2 weeks. I could have had either procedure, but also because I am only 38 years old, and my obstruction, it was the logical choice in my mind. I would rather not have surgery, but in the long term I want to do this only one time and be done. Its a huge decision but listen to your gut. Best of luck...

                        NEMC's (Boston) First Myectomy 7-22-2003


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