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.

Mayo Clinic

Collapse

About the Author

Collapse

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

  • Mayo Clinic

    I am contemplating a trip to Mayo, have some questions.
    What will they do? I have a pacer doing DDD pacing, will they test with the pacer turned on and off or just leave it on? (I am not satisfied with pacing.) My big fear is that I will be told there is nothing else to do or I'm not bad enough to do anything. Besides pacing I take toprol 50mg and verapamil 240 mg. my ep says I would not get enough benifit from a myectomy. I get sob and angina walking 100-150 yds and don't even tryu stairs anymore, inclines are hard and my hobby (dog training) suffers because I can't keep up with other people. My gradient is 15 at rest 65 provoked. my doc says this is too low and a myectomy will only get me down to 40. The pacing did wipe out my mitral regurg, it went from a 2+ down to a trace.

    Also, has anyone heard of problems from long term pacing?
    I am getting so I hate this disease and how it affects me and my family. Was diaagnosed 30 years ago at age 20. Last 10
    years have been rough.

    Thanks for listening and for replys.

    Art

  • #2
    Art

    as far as a myectomy everyone is different my gradient was about like your and i had a myectomy because it interferred with my everyday life, as far as going to a specialist in Cleveland it couldn't hurt and you may get some good answers and some solid answers, as far as the pacing goes i was paced for over a year and the doctor said it wasn't doing as well as they had hoped it would i guess my old heart was just stubborn

    As far as i know, i do have a AV-Block a mild one but i think that came from having the myectomy, i hope i have helped you some

    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


    • #3
      Shirley,

      I also have some AV block, I just wonder if they could do regular pacing an dnot ddd. I sometimes get the feeling that i overcome the ddd pacing when I exert past what they can test for and that is why I am symptomatic. I have been paced since early 1998. I quess I figure I will hear the same old thing and just be wasting time and money. I will probably go to Mayo as it is closer and I plan on driving. My biggest fear is that I'm just out of shape.

      Thanks,
      Art

      Comment


      • #4
        Art

        I was also DDD paced and my doc took me off because it wasn't doing any good and scheduled me for surgery, well it would have done the trick but i was thick all the way thru my left ventricle and and both ventricles are stiff, i wish i had went to see a specialist with my disease before surgery, i think they would have told me this then and to not waste my time with the surgery at that time, now idon't get me wrong i'm glad i had the surgery because if not i don't think i would be here today my mitral valve from the obstruction was hitting my Aorta and i was told i probably would not be here in 6 months so i'm glad i had it at the time and who know Dr. Maron probably would have said the same thing to me, good luck

        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


        • #5
          Art,

          I can tell you that the information in your posting has me concerned with the information you are getting from your doc. If your gradient is 15 at rest and 65 with stress, while you are paced it is likely that you may need to seek additional treatment as the meds are not giving you the relief you need.

          Take the trip to a specialty center you may just find that you have more options than you thought. Isnt your life worth the effort? I think it is!

          I hope all is well with you and your family.

          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

          Working...
          X