If this is your first visit, be sure to check out the FAQ in HCMA Announcements. You may have to register before you can post: click the register link above to proceed. To start viewing messages, select the forum that you want to visit from the selection below. Your Participation in this message board is strictly voluntary. Information and comments on the message board do not necessarily reflect the feelings, opinions, or positions of the Hypertrophic Cardiomyopathy Association. At no time should participants to this board substitute information within for individual medical advice. The Hypertrophic Cardiomyopathy Association shall not be liable for any information provided herein. All participants in this board should conduct themselves in a professional and respectful manner. Failure to do so will result in suspension or termination. The moderators of the message board working with the HCMA will be responsible for notifying participants if they have violated the rules of conduct for the board. Moderators or HCMA staff may edit any post to ensure it conforms with the rules of the board or may delete it. This community is welcoming to all those with HCM we ask that you remember each user comes to the board with information and a point of view that may differ from that which you hold, respect is critical, please post respectfully. Thank you

Announcement

Collapse
No announcement yet.

Results of MHI Evaluation

Collapse

About the Author

Collapse

BlueDevil Find out more about BlueDevil
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Results of MHI Evaluation

    Well, the process begun at the Minneapolis Heart Institute in late February came to a tentative conclusion yesterday: I had a stress echo performed and an evaluation presented to me.

    First of all, I don't know if any of you have seen the new digs for the MHI. They're quite posh! There is a large, comfortable waiting area with Internet access and house phones. The staff admits there are still some bugs in terms of checking in patients (and that's true), but the place has been open for only six weeks. Dr. Maron has a new nurse, Connie (I forget her last name), and she is truly fab. I really enjoyed meeting her.

    As far as the HCM goes, I am not obstructed. I figured this was the case going in, but given some of the contradictory information I've received over the years, it was good to have this finally confirmed. I did not get any of the "numbers" because, as will be demonstrated, my thoughts were elsewhere.

    I am responding well to the amiodarone. Blood tests all came out normal, but I will, of course, continue to be monitored. I will also have pulmonary and vision tests in the near future. Overall I feel fine with the amio.

    Now comes the fun part.

    Dr. Maron said that the MHI has only been using MRI on HCM patients for a couple years. My MRI revealed significant areas of the ventricles that were non-reactive. It could be contributing to the AF or not; he couldn't hazard a guess. I am going back in six months for another MRI to, I imagine, see if there is any change. He wants to explore the possibility of installing an implantable ECG (http://www.medtronic.com/reveal/health.html) for a period of time to track my heart activity on a more intensive and regular basis.

    I admit I am not quite sure what connection this has with the MRI findings; I think my partner and I were stuck on that and we didn't have the presence of mind to ask more questions. This is probably for the best, as I would probably obsess over this. I'm sure all will be made clearer when I go back in six months.

    So, that's that. I was told back in November '03 that I was "medically interesting," so I guess it might be true.

    -- T.
    Life is a banquet...and I got botulism! -- Me

    If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

  • #2
    I'm glad you had a good visit. I hope that in 6 months you have more answers.

    Reenie
    Reenie

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

    Comment


    • #3
      I agree with the comment on the check in at MHI. I was there in Feb. for a second opinion with Dr. Maron and the lady at the desk on check in told me he was not in town that day, but she would ask around or find another doctor. I almost had an MI in the waiting room after traveling half way across the country to get there. As it turns out, Dr. Maron was in fact around and once I got past the check in clerk, the expierence was A plus.

      I am curious about your MRI experience as Dr. Maron recommended that if I ever go back. Did they use the radiopathic dye? What was the approximate cost? What would an MRI show that an EBT scan not show?

      jall
      Jall

      Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
      Graduated to obstructed HCM by Dec, 2008.

      Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

      Comment


      • #4
        Hi Jall:

        You were there before they moved, then. I think part of the problem with the current setup is they have two separate check-ins: one for clinic (i.e., routine) appointments and one for test appointments. This isn't made very clear, though, and there needs to be a better way for people to queue up. Once you're checked in, you are given a pager (just like at Outback Steakhouse). When it goes off, you go back to registration and wait for someone to take you to the examination rooms or where you need to be. It's a clunky system overall.

        Also, some of the signage around the hospital and in the garages has not yet been changed, so unless you know exactly where you're going, you'll get lost.

        If I'm not mistaken, Maron's operation is separate from the MHI, so there might be some disconnect. That might be why you experienced what you did.

        I was administered a contrast, something I didn't know was part of the game until they brought out the needle. What is an EBT scan? I admit that I am not sure what Maron was looking for with regard to the MRI. Like I said above, this is something relatively new in his work.

        The cost of the MRI was about $4K.

        Hope this helps,

        -- Tim
        Life is a banquet...and I got botulism! -- Me

        If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

        Comment


        • #5
          An EBT is a type of CT scan. There is some competition amoungst the manufacturers of CT scanners and MRIs to capture the cardiology market. The key is to snap the picture quickly because the heart is, hopefully, always in motion. To minimize movement, they usually have you hold your breath. When I had an EBT done last October, I was told to hold my breath for 45 seconds. There is now a CT scanner on the market where you only need to hold your breath for 20 seconds. I don't know what the MRI technology at MHI is like (other than sounding expensive).
          Jall

          Diagnosed with unobstructed HCM in 2004 after a bad experience playing tennis
          Graduated to obstructed HCM by Dec, 2008.

          Life outside of HCM: Law, Photography, Tennis, Music, raising kids and camping

          Comment


          • #6
            Tim,

            Sounds like you had a good visit with some direction. Keep us updated on what you find out next.

            Best wishes,

            John
            41 years old. Diagnosed with HOCM in Feb 2005. Myectomy at Mayo on June 8, 2005

            Comment

            Working...
            X