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1st Real Opinon is in- Alcohol Ablation (?)

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  • 1st Real Opinon is in- Alcohol Ablation (?)

    Lisa,
    Just left a message for you with Kelly.
    Results of my latest Echo:
    Septal measurement - 2.0
    Resting Gradiant- 35MM
    Exertion Gradiant- 90MM
    Recommendation from Doctor- Alcohol Ablation

    As I’ve already posted, I will not have any procedure until I go through a full day of testing at either the Mayo or New England Medical.
    My cardiologist did forward my old tests to the Mayo, but I’ve not yet heard back from them. The Doctor has received them but it appears that the earliest I will hear anything is the week of 11/13.
    In the meantime I’m trying to get an appointment at New England. Their only openings this year are for 12/23, but they’re trying to work out something earlier.
    In the meantime my main concern would be insurance. I am working with an approach that I’ll have problems, but welcome being pleasantly surprised. New England says they usually have no issues with my carrier.
    My insurance company says that they need to be contacted by the doctor who made the diagnosis (my present cardiologist). New England says they would be glad to send any letters or materials that my cardiologist needs to get this ball rolling. I hope it can be that easy.
    Should an ablation appear to be the preferred method of treatment, this doctor seems to be experienced enough. I do wonder if I would have any insurance issues should I want to use Spencer.
    According to this doctor, there are 3 electrical circuits in the heart. HCM can knock out one or more and the alcohol could knock out one or more, thus the need for a pacemaker. He says my circuits appear to be fine, therefore lowering the odds for me needing a pacemaker if I choose to go this way. Is this viewpoint accurate?
    Lisa, if we do not talk, have a productive trip to Orlando. I think you guys can do better than Houlihans. See if you can get into Emerils.
    Fx

  • #2
    Re: 1st Real Opinon is in- Alcohol Ablation (?)

    The only reason I suggested Houlihans is because of location. If I had my way I would love for us to go to the Concourse at the Contemporary and watch the Magic Kingdom fireworks! I could get us a discount and if Lisa and Linda needed a ride I would take them! I can fit four extra people in my car. I-drive is not my area of knowledge but Disney is a whole other ballgame.

    Lets see.... there's Whispering Canyon, O'hanas, Vicki&Al's. Bohma, Wolfgang Puck's, Rainforest, Garden Grille, Liberty Tree Tavern, Tony's, Alfredo's, Mistukoshi, Brown Derby, Prime Time. and on and on.

    Oh No ! The is . I think I may have had way too much Pixie Dust for one day. I just ogt off work can't ya tell.

    mary s.

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    • #3
      Re: 1st Real Opinon is in- Alcohol Ablation (?)

      Felix - Have you even tried meds at all yet? I don't think I would be rushing to sign up for a procedure like ablation in which the long term implications aren't known (or open heart surgery either, for that matter) without trying medical treatment first. Your numbers don't sound that bad to me, in fact they sound similar to mine, if not better.

      My doctor says that I shouldn't even think about surgery because my symptoms are being treated by meds (or at least those symptoms which would be made better by an ablation or a myectomy, i.e. obstruction.) Once you have surgery, your heart still won't be cured. You will still have problems, so if it were me, I would spend a few years trying various meds. Just my opinion....

      Good luck.

      Cynthia
      Daughter of Father with HCM
      Diagnosed with HCM 1999.
      Full term pregnancy - Son born 11/01
      ICD implanted 2/03; generator replaced 2/2005 and 2/2012
      Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

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      • #4
        Re: 1st Real Opinon is in- Alcohol Ablation (?)

        I've been on either Toprol or Verapramil for the last three years. However, I do not feel that I've exhausted the med process yet (Norpace?).
        My symptoms range from annoying to interferring. THEY MUST GO!
        If that means an ablation or myectomy then so be it. But I prefer to treat this with meds. Thats why I want the full day of testing with physicians who truly know our condition.
        Man, that's a nice list of restaurants. Treat lisa nice, I think she deserves it.
        Fx

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        • #5
          Re: 1st Real Opinon is in- Alcohol Ablation (?)

          Hi Felix,

          I can almost tell you what they will say at NEMC. The best way to attack this is to first exhaust all the drug treatment options before any medical intervention procedure. Then if no luck that way and you are at the end of your rope with it all, it will depend on your age primarily. Genereally speaking, ablations are best suited for folks who are over about 50 or 55 or so. If you are younger than this then a myectomy will likely be recomended, unless there are circumstances that would preclude you from surgery.

          I am 38 years old and wanted the ablation for fairly obvious reasons, but for long term reasons the myectomy was my choice. I am happy with my choice and it was only done this last July. Bottom line you are given the choice if you are a candidate for both and you make the decision.

          Best of luck!

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

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          • #6
            Re: 1st Real Opinon is in- Alcohol Ablation (?)

            Hi!


            Doing the ablation means you will not need surgery and I think it is a big +.
            But it is important to find a center with as much experience as possible.
            My son can not have the myoctomy and it is too little for the ablation option.
            Wish you the best!
            I know it is not easy to decide!
            Wishes for healh, peace and love!

            Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
            Haifa - Israel.

            Comment


            • #7
              Re: 1st Real Opinon is in- Alcohol Ablation (?)

              Ablation Pluses - Not cut open, easier to recover, decent track record.

              Ablation Minuses - No long term data, 8-15% chance of a pacemaker.

              When it comes down to a choice between ablation and myectomy, as long as both are in the hands of skilled and experienced physicians I actually now lean to the myectomy.
              I'm 45 years old. Withe the myectomy I at least have a good idea what 65 will be like.
              As to NEM wanting to exhaust medications first. I couldn't agree more (if thats what they end up saying).
              Hey, its an opportunity to spend the night before at Legal Seafood.
              Fx

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              • #8
                Re: 1st Real Opinon is in- Alcohol Ablation (?)

                Felix - Please keep us updated after your evaluation. I am interested to see what meds are recommended next, and how they work for you.

                My 125 mg. of atenolol seems to control my gradient and mitral regurg, but it doesn't always suppress the arrythmias, which can be quite bad at times, and cause pre-syncope. I feel pretty good when I am not having them...but I hear you about wanting the symptoms to be improved.

                Good luck, and keep us posted!

                Cynthia
                Daughter of Father with HCM
                Diagnosed with HCM 1999.
                Full term pregnancy - Son born 11/01
                ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                Comment


                • #9
                  Re: 1st Real Opinon is in- Alcohol Ablation (?)

                  Unfortunately the ablation isn't always the be all and end all. My husband had a very successful ablation, but after two weeks his obstruction came back. It is very rare that this happens, but it is a possibility. A second one can be done, but is not always successful, either. It's a really tough decision to make. Best of luck,
                  Roxann

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                  • #10
                    Re: 1st Real Opinon is in- Alcohol Ablation (?)

                    Hi!!

                    Unfotunately the obstrction may re-appear also after the myoctomy.
                    No promisses about this
                    Try to learn what are the risks with the two options and then decice.
                    Good luck![/quote]
                    Wishes for healh, peace and love!

                    Daniela E-H, Mother to Matan-Ben (13 years old) who had his AICD implantation (29/03/04) and Myectomy (14/12/08) and Noga (4 years old) not affected
                    Haifa - Israel.

                    Comment


                    • #11
                      Re: 1st Real Opinon is in- Alcohol Ablation (?)

                      The incidence of obstruction reappearing after a myectomy are a tiny tiny fraction and are usually associated with surgeons who have little experience with the surgery. An experienced surgeon is essential. Obstruction or problems with the electrical pathways are much more common with ablations, however.
                      NEMC's (Boston) First Myectomy 7-22-2003

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                      • #12
                        Re: 1st Real Opinon is in- Alcohol Ablation (?)

                        I will add my two cents -
                        1. Myectomy is the "gold standard" as stated in the newest concensus document.
                        2. Alcohol Septal Ablations are NOT as simple as they sound.
                        3. There are more deaths associated with ASA than myectomy.
                        4. The Mitral Valve plays a much larger role in the success or failure of ASA than previously given credit for.

                        See a specialist - learn your options and make a careful 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)

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