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[b]Boston HCM Clinic[/b]

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GaryV Find out more about GaryV
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  • #1

    [b]Boston HCM Clinic[/b]

    This was a great experience for me to go there. A place that specializes in helping all those who have any form of HCM. The whole program was the tops, atleast for me. You are not treated like any old patient, they answer all your questions with the confident answers you want. After having an ekg, an echo, and my icd interrogted I met with Dr. M. Maron and EP specialist Dr. Link. Together they told me what was needed to be done to straighten out my arrythmias, both my vt and svts'. They recommended having the svt ablation as well as pacing therapy. Dr. Link adjusted my icd to start the pacing and it has already helped. I know that it would have fired this morning if it wasn't for the pacing therapy. On Mach 15th I will have the svt ablation done at Columbia Presbyterian Hospital in NYC. I am very excited about this, they said that this will greatly reduce the amount of shocks that I receive, and will improve my overall quality of life. What else can you ask for????? I would like to thank Lisa S. for all her help with this and all her support

    thank you,
    Gary
    Tags: None
  • #2
    Re: Boston HCM Clinic

    Gary, Best wishes, keep us posted! Linda

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    • #3
      Re: Boston HCM Clinic

      Hello Gary
      I realize that I am about a month behind on this tread...I was introducded to this website last Tuesday by....if you can believe it....Tufts New England Medical Ceter....Dr. Maron is my Doctor. Would this be the same Doctor that you saw?
      I was very impressed with this Clinic. I love the fact that I found a Clinic that deals with nothing but HCM. No guess work anymore.
      I was a bit surprised at Dr. Maron's age.....he's so young! But with hisknowledge and that of the other Doctor's....I'm in great hands and I feel very sure that they will lead me in the right direction.
      Please le me know more on your experience and why you came to Boston? I hope your doing well now.
      Marlene

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      • #4
        Re: Boston HCM Clinic

        Hi Marlene,
        Yes I saw the same "young" Dr. Maron as you. I was impressed with his knowledge, but I was not suprised by it. After all he is following in the footsteps of nis father. I was really impressed by the clinic as a whole. I was also very impressed by the EP Dr. Link. He was very technical but broke everything down so I knew exactly what he was talking about. This was my best experience with a group of Drs' that specialize in this. I would not hesitate to go back there, and I will probably be going back for a follow up in March of next year. If you have any more question please don't hesitate to ask. Also.... welcome to this great web site, it's filled with great people and a lot of knowledge. best of luck to you.

        Gary

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        • #5
          Re: Boston HCM Clinic

          Score another success for patients, doctors, staff and facility. Boy, it sure is comforting to hear stories like that.
          Burt

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          • #6
            Re: Boston HCM Clinic

            Marlene and Gary,

            I am glad to see you both have found the Tufts clinic. They are a wonderful group and if you haven't met all of them, there are many more there who work behind the scenes as well. Celeste comes to mind, who is a major coordinator there, charming, helpful and very caring. I found the clinic and was actually one of the very first patients there, as well as there first soup to nuts case. Not saying I'm a nut case....er, we anyway, it was my first comprehensive clinic that took me through the entire process which culminated in a myectomy (their first) this last July. Dr. Maron was available to me anytime I needed to talk to him. I am now going on 10 months out and have made increadible progress. I owe this to the group there. You are in good hands. They are a 'new' clinic, but are a wealth of knowledge and compitancy. As was noted, Martin Maron is the son of Dr. Barry Maron, the noted expert on HCM, so I bet you can imagine what the dinner conversations were for him groing up! He probably knew more by osmosis by the age of 10 than most full on cardiologists know about our disease 10 years into their carreer!

            Anyway, best of luck.

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

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            • #7
              Re: Boston HCM Clinic

              Gary - Hey I missed the original post here... I was in New Orleans.
              How did the ablation go?

              I hope to see you at the meeting this year!

              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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              • #8
                Re: Boston HCM Clinic

                Hi Lisa,

                Just to let you know the ablation went great. I was sedated for it but was awake for most of the proceedure quite amazing. The only part that hurt was the part of the ablation itself. I could actually feel the burning and it was hot. The worst part is you can't move during that part and you have to breath easy, so as you can imagine that was difficult but i managed just fine. Everything has been fine since, no problems at all. I would like to sincerely thank you for setting me up with the Bosyon clinic that was a great experience for me and I highly reccomend it to anyone that needs to be looked at. I will be attending the meeting on Sat. the 5th so I will see you there. Once again thank you for you help.

                Gary

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                • #9
                  Re: Boston HCM Clinic

                  You are very welcome! Glad to hear you are feeling 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)

                  Comment

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