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Cleveland or Boston (or Rochester) for MYECTOMY

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Stuart Schwartz Find out more about Stuart Schwartz
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  • Cleveland or Boston (or Rochester) for MYECTOMY

    Hi all,

    Thanks for all the great feed back.
    4 weeks ago I didn't know the word hypertrophic, didn't know of the HCMA, couldn't tell you what a myectomy was.
    Today, I feel lucky to have found the HCMA (just 3 days prior to going in for the wrong procedure her in Philadelphia).

    Spoke with Lisa today.

    I am going to need a Myectomy & now I need to decide where to go.
    Cleveland - Boston - Rochester?
    Any opinions?

    Stuart Schwartz

    [email protected]
    Cleveland Myectomy Club
    August 31, 2004

  • #2
    Re: Cleveland or Boston (or Rochester) for MYECTOMY

    OK troops Stuart needs some help here. If you could all help him out with some of your "been there, done that stories" it would help him make the right choice for him!

    Thanks!

    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


    • #3
      Re: Cleveland or Boston (or Rochester) for MYECTOMY

      Stuart

      I had my Myectomy, 7/24/03 @ Mayo. What a SUPER place. The down side, is the location. I live in a suburb of Detroit, flew into Minneapolis-took a Shuttle (1 1/2 hour) to Rochester. Coming home, my Husband rented a Limo (so I wouldn't be jostled, pushed etc) back to Miinie. The plane was arduous for me. The Care was Sensational at Mayo. If you would like any specific ? answered, don't hesitate to ask or PM me. What ever I can do to make this easier for you.
      The reason I went to Mayo, was my local Cardio wanted me to see Dr Nishimura & Dr Derani.
      BE WELL
      RONNIE

      Comment


      • #4
        Re: Cleveland or Boston (or Rochester) for MYECTOMY

        Stuart,

        I posted a respone to your other post on this issue.

        S

        Comment


        • #5
          Re: Cleveland or Boston (or Rochester) for MYECTOMY

          Stuart,

          I'm so glad that you were able to speak with Lisa and get the benefit of her knowledge and experience with HCM. She's pretty nifty, ain't she? We all feel very fortunate to have found her, as you have

          I just had my myectomy four weeks ago at the Cleveland Clinic (CCF), and i just can't say enough nice things about the folks there. My recovery so far has been rather astounding (at least to me), and i credit most of this to the level of experience and skill of the surgeons, doctors, and staff. To be honest, i first chose the Cleveland Clinic based on sheer volume. They performed about 100 myectomies last year alone, and have been rated the #1 heart center in the country by U.S. News and World Report for ten years in a row.

          My second consideration was proximity. I live in western Pennsylvania, so Cleveland was of course the closest of the three major centers. Another factor which may or may not come into play for you, is the insurance issue. Since Ohio is a neighboring state, my insurance company had a much easier time providing out-of-network coverage for me at the Cleveland Clinic than to any of the others. I don't know why this is the case... perhaps they have agreements with surrounding states, but you might want to research that aspect of things when making your decision.

          To be fair, i must also admit that i had my share of trying times at the Cleveland Clinic as well. Appointments don't always go off without a hitch, and you often find yourself waiting much longer than scheduled. I'm not always as patient as i should be, and found myself getting very frustrated at this. However, when you're faced with the prospect of open-heart surgery, getting poked and prodded from every direction, and you are naturally quite anxious to begin with... you don't always stop to appreciate the level of care you are recieving at the time.

          Looking back now on the experience as a whole, i really have nothing but good things to say. Of course, i'm understandably biased. All three centers that you mentioned are top notch, and i believe you will recieve excellent care at any one of them.

          Jim
          "Some days you're the dog... some days you're the hydrant."

          Comment


          • #6
            Re: Cleveland or Boston (or Rochester) for MYECTOMY

            Hi,

            I had my myectomy (and double by pass) at CCF March 18, 2004. I had some complications, such as a small TIA, infection and the surgery caused heart block so I needed a pace maker. Be cause of the infection I could not get my permanet pace maker untill the infection was taken care of. I recieved my pace maker April 13 and went home to Annapolis, MD on the 15th of April. I also had a thoracadamy ( surgery to open rib cage) on my left side to remove lots of fluid between my rib cage and left lung. This surgery was done on April 1st. I also had some other procedures. The great nurses in the cardiopulmonary intensive care unit (G54) were fantastic. I spent 26 days with them and they were the best.

            How do I feel now? I am doing well, no more chest and arm pain or sob. I can now walk up hills and grades again. I can do some exersion after eating when I couldn't before surgery without chest pains, etc.
            I am in cadio rehab at my local hospital twice a week and walk another 3 to 4 days per week. I do get tired easly now but I'm sure that will get better as time goes on.

            If you would like to discuss this on the telephone send me a private message and I will give you my phone number.

            Ralph

            edited to remove phone number

            Comment


            • #7
              Re: Cleveland or Boston (or Rochester) for MYECTOMY

              Hi. My 17 year old son just had a myectomy 2 days ago here at the Mayo Clinic. I just can't say enough about his care here. We came from far away but I am very confident that we made the right choice. Dr. Dearani performed the surgery and he did a phenominal job. The procedure was more complicated then your regular left ventricular/septal myectomy. Both right and the left sides of his heart were involved. I was very concerned of course, but as soon as the surgery was over, Dr. Dearani came out and gave us the good news that all went well. The Mayo Clinic is amazing in itself. VERY well organized. Everything ran so smoothly. That in itself is something to be happy about. Good luck with your decision and best wishes for a speedy recovery!!

              Comment


              • #8
                Re: Cleveland or Boston (or Rochester) for MYECTOMY

                I'm glad to hear that your son got such good care. You certainly had him in the right place. Welcome to the HCMA.

                Reenie
                Reenie

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

                Comment


                • #9
                  Re: Cleveland or Boston (or Rochester) for MYECTOMY

                  Thank you for sharing your experience at Mayo! I agree - they have a great team!!!

                  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

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