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Who to see in Boston


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Chuck Find out more about Chuck
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  • Who to see in Boston

    I know alot of Bostonians are going to NEMC. is this "the" place to go? I'm thinking I need a change...or at least a good "once over" by a top-doc. (I've got the insurance...why not?).

    The cardio I've been seeing has commented that "the" place is Mass General. has that changed? or was it ever so?

    I got very sick a few years ago with what turned out to be an unknown infection. Local small-town hospital couldn't deal with me, so they sent me to St. E's...which I thought was "Tufts". when I reported this event to my regular cardio after the fact, he commented that if anything like that should ever happen again, I should go to MGH.

    Anyway, this illness...had high fever..104+...fever spiked during the night, and I had symptoms of CHF. (fluid in the lungs, trouble breathing, etc). They feared endocarditis, but it turned out not to be. never figured out what it was, and it disappeared as quickly as it came on. they were making plans to send me home w/ a pic line, 6 weeks of IV-antibiotics, etc. but it just disappeared.

    off the subject, sort of...but from my experience there, I thought that "Tufts" was affiliated w/ St. E's...while I see people here referring to "Tufts-NEMC". If NEMC is "the" place for HCMers, why did they send me to St.E's? (this was 5 years ago, nearly, now that I think of it. perhaps things have changed?).

    and I guess my cardio thinks that the "Harvard" dudes are "the" people to see.
    dx'd HCM @age24, (1989) |Gene + |no family history

  • #2
    I'm not sure about the particulars of any of these hospitals 5 years ago, but I do know that in the last few years NEMC has built a true HCM clinic where they have top experts who are well-known thoughout the US for their knowledge and understanding of HCM. Dr Udelson and Dr Martin Maron are the two names that I'm familiar with, but there may be others. Both Drs Udelson and Maron are usually at our annual meeting in New Jersey the first weekend in June. I hope you can join us. I'm also posting 2 links I think you might be interested in. Best of luck!




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


    • #3
      Hey Chuckee Babee,
      In answer to your question - - - YES.

      That is, there are three facilities in the US which are considered the very top in the care and feeding of HCM. The nearest one for you (you lucky dog) is Tufts – NEMC. The other two – which I’m sure you see referred to quite often in these postings is the Cleveland Clinic in Ohio and The Mayo Clinic in Rochester, Minnesota.

      You can supply all your past records and tests, but I think they always run the full battery of tests themselves, which in the long run is a very good thing. First they have the experts who will know exactly what to look for in the tests and testing, and secondly, because they have the expertise to know what it means and how to deal with it.

      Let us know how you make out, my friend – and more power to you.


      • #4

        Yes for us Massachussetts people there is the excellent NEMC . I started out first diagnosed at Brigham and Womens and then when I found out from Lisa that there was a bonifide HCM clinic there I went to NEMC for a second opinion. It was the opinion of greatest value to me personally. This center more then likely is directly responsible for NEMC doing the largest number of myectomies in the Boston/New England area. They started up in 2002 and with the new center and began doing their first myectomies in 2003. I was the 3rd. I am sure others will tell you but we have all recieved excellent care . Dr Maron and Dr Udelson are very kind, invested, doctors concerned with getting all their patients feeling better and functioning to their optimal level of comfort. A goal for quality of life in respect to each individuals particular case of HCM is one major issue that is dealt with, with extreme proficiency. The team approach that each individual recieves , supports the individual and helps to guide them in their decision making process with clear , concise facts and in terms that can be understood by all.

        Go for it you will not be dissapointed. Celeste Webster is the person who books the appointments in the clinic , she will help guide you through the process and is great at returning phone calls if you have more questions after you hang up.

        If you have any other concerns please feel free to PM me.

        Best wishes .

        Dx @ 47 with HOCM & HF:11/00
        Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
        Lead failure,replaced 12/06.
        SF lead recall:07,extracted leads and new device 2012
        [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
        Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
        Genetic mutation 4/09, mother(d), brother, son, gene+
        Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin


        • #5
          I travel from NJ to NEMC as my speciality center - I think that says a great deal!

          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)


          • #6

            OK, I have 2 cents worth here.

            I was the first myectomy at NEMC. My case is very very complex and I am getting world class care at NEMC. How do I know this? Because I, as does Pam, come from a clinical background. I have a post that will go out later this week updating my situation which is the subject now of several papers authored by the top doctors in this field.

            By the way, I am employed by "the Harvard guys". I am an employee of MGH/Harvard and I would not hesitate to go to NEMC. Yes MGH is doing myectomies etc., but for what it is worth, and it is your decision to make, you will get the best care at NEMC in the Boston area. This is not to say MGH or Harvard is substandard...they just don't have the leading experts in THIS field.

            My 2, maybe 3 cents worth.

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


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