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Cleveland or Mayo for a Myectomy

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Liannedr Find out more about Liannedr
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  • Cleveland or Mayo for a Myectomy

    My husband has been waiting for a myectomy date at Tufts/NEMC for the past 3 months & just found out that they do not feel ready at this time to perform his Myectomy & he will have to go to either Cleveland or the Mayo. We will be traveling from Boston & would like to hear peoples experiences with both facilities, as well as what to expect having a myectomy & having to travel - i.e., how long before you can fly home, etc. Any input is greatly appreciated!

  • #2
    Re: Cleveland or Mayo for a Myectomy

    Hi there!

    What a hectic time this must be for both you and your husband as you 'switch gears' in going to a different facility. I hope that I can help you out some and I'm sure you will hear from others as well.

    Re: Cleveland vs. Mayo for the myectomy itself - you cannot go wrong with either, they are top notch in every possible way and are really the only places I would suggest folks to have the surgery done at. (I am biased to Cleveland though as I had my myectomy there last August and they carry the honor of being the top cardiac hospital in the country for many years running but I give due respect to Mayo as well as they are equally impressive!!! ). Based on their equally outstanding track records you might want to let other factors help to make your decision: where will your insurance cover your husband, which is the easiest of locations for you to reach, scheduling, etc.

    Re: where to stay (at least from Cleveland side of things) - my husband wrote another response a while ago regarding where to stay in Cleveland and others talked about their suggestions too. (One of the links he put in his response was to the Cleveland Clinic web page that talks about lodging which may be helpful if you haven't located it yet.) He also included some links to other threads containing info regarding myectomies and traveling post-op. It might be best for me to point you to his response instead of trying to type it in again. You also can run searches on the board as well on myectomy, etc

    Click here for 'Help from the Cleveland Crew'

    Re: myectomy experience. This may be somewhere in various other postings but I hate to have you looking all over the place for it! As the myectomy should provide immediate relief your husband will hopefully notice improvement from the surgery right away, even in the hospital! It is a major surgery so expecting a week in the hospital is typical followed by 6 weeks of restful recovery (no driving a car, not lifting anything heavier than a gallon of milk, etc.) although he will be encouraged to walk daily to build strength and each day he will feel stronger and more like himself. I am about 4.5 hours away from CCF so my husband and I drove home after the surgery; I was released and we hit the road the same day stopping once every hour so that I could walk 10 minutes at a time as per my release instructions. I know many people fly home post-surgery and I hope they chime in for you here to give you the details on that but I seem to recall hearing folks leaving the next day or so after the release from the hospital.

    No matter whether you go to CCF or Mayo your husband will be in the best of care not just from the doctor but nurses and staff as well.

    All the best, please let me know if I can help otherwise!
    Lynn
    Lynn Stewart
    HOCM 4/2002
    Cleveland Myectomy Crew 8/2002

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    • #3
      Re: Cleveland or Mayo for a Myectomy

      Call each center and talk to the people; talk to the doctor who will do the surgery. See which one suits you best.

      S

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      • #4
        Re: Cleveland or Mayo for a Myectomy

        Either center is well skilled to handle this procedure. You will find it somewhat hard to make a choice based on the 2 - many times the choice is based on your comfort zone -- if you have friends or family in either area, transportation and other issues one may not look may help you make the best choice for you.
        Take your time - talk to the centers get ideas from those here on the board and make the best choice for YOU.
        Be well,
        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)

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        • #5
          Re: Cleveland or Mayo for a Myectomy

          Hi Liannedr,

          I am the other one you might have heard of at Tufts/NEMC waiting. Please contact me when you can.

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

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          • #6
            Re: Cleveland or Mayo for a Myectomy

            I had a myectomy May 1 of this year at the Mayo Clinic in Minnesota. I live 12 hours away so flying was the most sensible choice for me. My surgery was performed on a Thursday and I was flying home the following Tuesday. The flight wasn't as painful as I expected. The worst was the sudden stop when we landed. Keep a pillow in hand to hold against your chest. This helps tremendously.
            I had a wonderful experience at Mayo. They were very organized, very friendly and skillful. We stayed at a hotel across the street from St. Mary's where the surgery was performed. A shuttle takes you two blocks down the street to the Mayo. The hotel we stayed at was the Bell Tower Inn. Nothing fancy - comparable to a Super 8 - prices were reasonable. I was off work for 7 weeks. I have joined an arobics class and can do many things with ease.
            Although I don't have any experience with Cleveland, I hear they are just at good as Mayo. Good Luck. I hope your experience goes as well as mine.

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            • #7
              Re: Cleveland or Mayo for a Myectomy

              I had my Myectomy at Cleveland in March. Great place. I am now working full time in my landscaping company and feel like a new person. Dr Smedira (sp) is the best. I would recomend him to anyone.

              How's it going Lisa you yankee?

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              • #8
                Re: Cleveland or Mayo for a Myectomy

                Patrick, Congratulations! It must feel great to be back to work, mentally and physically. I would imagine your business is booming about this time of year. Linda

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