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Where to have a myectomy abroad ?

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giovy_65 Find out more about giovy_65
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  • Where to have a myectomy abroad ?

    Actually I hope my 3-year-old son will not undergo any surgical operation, but as the gradient keeps around 40 mm Hg despite propranolol I prefer to get first hand information beforehand to be ready in case I need it in the future.
    My question arises from the fact we live in Italy: does any of you know about excellent centres in Europe ? I've heard about the Heart hospital in London, would you advise that or rather choose another ?
    Thanks. Giovanni

  • #2
    Germany also seems very good, you may check on www.hocm.de and deeper links such as www.tash-hocm.de. Uni Marburg and Munster (Bielefeld) offer extensive information on Tash (ablation) which seems to be the preferred treatment compared to myectomy.

    Also, you may check www.thoraxcentrum.nl (dutch) as the EMC university hospital in Rotterdam also has extensive knowledge on HCM related treatments.

    Hope this helps.
    \"Hope is disappointment postponed\"

    Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

    Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

    Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

    Meds (current) sotalol, dabigatran, furosemide.

    Comment


    • #3
      mio marito e' stato operato di miotomia nel 1991 presso la Mayo clinic di Rochester Minnesota USA dal prof. Danielson.
      In Italia da quello che sappiamo esiste un centro cardiologico
      particolarmente specializzato per la cardiomiopatia ipertrofica che e' presso l'Ospedale Galliera di Genova prof.Spirito.
      Dalla nostra esperienza credo che il centro di Rochester sia uno di quelli che ha una esperienza maggiore per questa patologia.
      Credo che la cosa importante sia appoggiarsi ad un centro cardiologico
      che conosca a fondo questa patologia
      Cordiali saluti e auguri di un felice anno.
      Per ogni altra informazione sono a disposizione

      Comment


      • #4
        As far as i appreciate people of many nationalities participating, i do not appreciate getting 'locked out' of a discussion i participate in because native speakers switch to non-english. Please keep discussions on the public boards in english or provide explanation/translation.
        \"Hope is disappointment postponed\"

        Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

        Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

        Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

        Meds (current) sotalol, dabigatran, furosemide.

        Comment


        • #5
          I appreciate the reaching out for someone in their native language, and would not like to discourage it - however, for us poor mono-glots please also supply a translation so we can follow along, or try communicating through a Private Message.

          As far as your question, I have seen a number of articles which included current research being done in Italy. I would suggest contacting Lisa and ask for her guidance in this matter. She is a fund of information. She is usually in on Tuesday’s and Thursday’s East Coast time, during normal business hours.

          Good luck,
          Burt

          Comment


          • #6
            As Burton rightly remarks, it should be appreciated that others step forward and point the way to possible treatments and specialists (in their own country or nearby). I wouldn't want to discourage that the least, but try to keep public discussions in english so we can all participate - and learn from it. I can only type as fast as an Italian can speak (but only in dutch or in english, certainly not in italian!). :P
            \"Hope is disappointment postponed\"

            Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

            Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

            Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

            Meds (current) sotalol, dabigatran, furosemide.

            Comment


            • #7
              Using www.freetranslation.com , below is Guido's post.

              Reenie

              Mine I marry it is been operated of miotomia in 1991 I press the Mayo clinic of Rochester Minnesota USA from the prof. Danielson. In Italy from what sappiamo exists a center cardiologico specially specialized for the cardiomiopatia ipertrofica that is I press the hospital Galliera of Genoa prof. Spirit. From our experience I believe that the Rochester center is one of those that has a greater experience for this pathology. I believe that the important thing is to lean to a
              center cardiologico than conosca to fund this Cordial pathology greetings and omens of a happy year. For every other information I am available
              Reenie

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

              Comment


              • #8
                Reenie

                Thank You very much that will definetly come in handy, and yes this a English speaking forum we need to keep it that way, please use your PM for any other language, but please keep in touch

                Shirley
                Diagnosed 2003
                Myectomy 2-23-2004
                Husband: Ken
                Son: John diagnosed 2004
                Daughter: Janet (free of HCM)

                Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

                Comment


                • #9
                  Translation for Guido's reply

                  Hello everybody, given that I posted the original question about where to find major myectomy centers in Europe, below you find the English translation for Guido's reply, who just meant to be kind with me providing the answer in Italian but I am sure didn't want to hurt anybody.
                  I just wish all the best for the new year to everybody here. Giovanni

                  My husband had a myectomy in 1991 performed by Prof. Danielson c/o Rochester's Mayo Clinic in Minnesota. As far as we know, in Italy there's a cardiologic center highly specialized in hypertrophic cardiomyopathy c/o Prof. Spirito's Ospedale Galliera in Genoa. From what we've seen I think the Rochester center is among the most advanced for the treatment of this pathology, which is a very important factor.
                  Best wishes for the new year.
                  Kind regards

                  mio marito e' stato operato di miotomia nel 1991 presso la Mayo clinic di Rochester Minnesota USA dal prof. Danielson.
                  In Italia da quello che sappiamo esiste un centro cardiologico
                  particolarmente specializzato per la cardiomiopatia ipertrofica che e' presso l'Ospedale Galliera di Genova prof.Spirito.
                  Dalla nostra esperienza credo che il centro di Rochester sia uno di quelli che ha una esperienza maggiore per questa patologia.
                  Credo che la cosa importante sia appoggiarsi ad un centro cardiologico
                  che conosca a fondo questa patologia
                  Cordiali saluti e auguri di un felice anno.
                  Per ogni altra informazione sono a disposizione

                  Comment


                  • #10
                    The last translation is certainly better than the machine provided :P

                    Is it specifically a myectomy you're seeking information about or (also) ablation or TASH?
                    \"Hope is disappointment postponed\"

                    Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                    Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                    Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                    Meds (current) sotalol, dabigatran, furosemide.

                    Comment


                    • #11
                      I know that Guido didn't mean any harm and was trying to help. I just provided the closest translation I could come up with for English speakers here on HCMA. I'm not offended that the original post was in Italian. I hope nobody else was offended either. We in America sometimes get a little caught up in the fact that almost everyone we come in contact with speaks English as well as a native language. We forget that there are others who prefer to use their own language instead of translating everything. Thank you for posting the proper translation.

                      Reenie
                      Reenie

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

                      Comment


                      • #12
                        Hi,

                        It is nice to see people from all over the world coming here to learn. Lets all be open minded and helpful should someone post in a different language as a point of reference the HCMA provides a link to a translator at: http://www.4hcm.org/espanol/index.php

                        Dr. Spirto is in Italy and should be able to provide you with help in locating a surgeon.

                        Best wishes,
                        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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