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csbell701 Find out more about csbell701
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  • #1

    Introduction

    ALthough I have accessed this site many times in the past, I just recently discovered the wealth of information you guys share on the message boards. You have provided me with a good background to discuss septal ablation when I meet with Dr Spencer on May 14th. He has tentatively scheduled the procedure for the 15th. Is that rushing into it too quickly? I have discussed it with both my cardiologist and my primary doctor and they are convinced that I am a candidate for SEA. I would appreciate some imput from others. Thanks!

    Carol B.
    Tags: None
  • #2
    Re: Introduction

    Dear Carol,

    We encourage everyone to fully weigh all of their options and to ideally get two opinions from HCM specialists if they can when you get into surgical/invasive procedures like myectomy and ablation.

    Dr. Spencer is very highly regarded, so you are way ahead of the game there.

    The only thing I would ask is how old are you? It is my understanding that some experts won't do an ablation on anyone under 50 since the long term effects on ablations are not yet known.

    If you do a search (the search button is at the top of the board) for "ablation" and "myectomy" in here, you will find a TON of opinions about both procedures.

    And I'm sure others will post their experiences/feelings here too.

    Happy reading,

    Sarah

    Comment

    • #3
      Re: Introduction

      I have read several times here that most of the experts don't consider ablations for people under 50 yet all the people I know here who have had ablations have been under 50. some in their 20s, 30s and 40s. The ones I have heard from have all been successful so far. Is it just a certain institution that won't do them or whats the deal?

      Comment

      • #4
        Re: Introduction

        Kathy, part of the reason that it isn't often suggested for those under 50 is the lack of long-term data on the procedure in younger people. Other than that, I guess you should ask your doctor.

        Reenie
        Reenie

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

        Comment

        • #5
          Re: Introduction

          Your question is not an easy one.
          I would break down the question as follows -
          1. Do I need septal reduction?
          2. Have I tried all medications?
          3. Is my mitral valve in need of repair?
          4. Is myectomy best for me?
          5. Is ablation best for me?

          These questions need careful evaluation and it may not be in your best interest to leave only 24 hours for thought.
          In some cases medication changes take weeks to work but then do provide significant relief from symptoms.

          Think about all your options then make a choice.

          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

          • #6
            Re: Introduction

            Dear Sarah,

            Thanks for the input. I have been reading the messages on the Ablation/myectomy message board and was aware of the age thing as well as the many other things I need to consider. Since I am 68 years old, my age should not be a factor in which procedure is best for me. Hopefully. once I meet with Dr Spencer and go over the results of the echo and other tests he has arranged, I will have a better idea of what I should do.

            Carol

            Comment

            • #7
              Re: Introduction

              Dear Lisa,

              Thank you for the detailed list of things I should consider. Since this is my busy time of year, I sort of put this medical problem on the back burner until tax season was over and now I am trying to get as much knowledge as I can about both procedures. My children have talked to friends of theirs who are in the medical profession and were told "Ablation is a piece of cake. Our cardiologists are doing so many of them every day, it is now a routine procedure". I am having trouble buying into that. I was reassured by, I believe, your comment that only cardiologists who specialize in doing ablations should be considered.
              Thanks for being here for us.

              Carol

              Comment

              • #8
                Re: Introduction

                This is far from a piece of cake! This is a complex procedure. What is even more important is the obstruction is only PART of the problem and this is a factor that is often overlooked. HCM is more than obstruction.
                I have said this no fewer then 100 times ...move slow...ask questions and make the BEST choice for YOU .
                Be 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

                • #9
                  Re: Introduction

                  Dear Lisa,

                  Thanks again for the great advice. I plan to go into the meeting with Dr Spencer with an open mind and will make the decision after I have all of the facts. Until then I just plan to gain as much knowledge as I can about this condition and the options that I may be faced with.

                  Carol

                  Comment

                  • #10
                    Re: Introduction

                    Be well and send my regards to Dr. Spencer!

                    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

                    • #11
                      Re: Introduction

                      Lisa

                      I'll give Dr Spencer your regards. I'll let you guys know what I decide to do. Thanks for being here for me.



                      Blessings to all,

                      Carol

                      Comment

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