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  • Ablation?

    Should i go for an ablation or not? My doc is tentatively proposing it, but sofar i've read a lot against it at my age - 41 - condition - relatively fair but symptomatic - and not all possible medication tried over time (e.g. we're trying to increase the BB dosage).

    Ad.
    \"Hope is disappointment postponed\"

    Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

    Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

    Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

    Meds (current) sotalol, dabigatran, furosemide.

  • #2
    Are there reasons you should have an ablation instead of myectomy?

    Reenie
    Reenie

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

    Comment


    • #3
      This is just an opinion, so please don't get mad at me everyone.

      But, I would choose a myectomy over an ablation any day.

      That is just my choice.

      (I don't want to do either, but if I had the choice, I'd go with the myectomy.)

      I wish you the best with your decision.


      Eve
      49 yrs. old
      Diagnosed at 31.
      Cardiac Arrest 2003, RF Ablation in AZ, no positive result -
      First ICD 2003 - In 2006 lead went bad, abandoned lead, threaded new one & new generator
      Myectomy 5-5-05 at The Cleveland Clinic - Dr. Lever & Dr. Smedira -heart surgeon.
      Currently have Grade 2 Diastolic Dysfunction with pulmonary hypertension & pulmonary edema.
      My brother passed away suddenly at 34 yrs old from HCM.
      2 teenage children, ages 17 and 15.

      Comment


      • #4
        Reenie,



        Not discussed yet with the doc. But it was mentioned.

        Ad

        Eve,

        I thought that too...
        \"Hope is disappointment postponed\"

        Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

        Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

        Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

        Meds (current) sotalol, dabigatran, furosemide.

        Comment


        • #5
          In the Netherlands you are likely not going to find a surgeon well trained in myectomy - thus your options may be limited. At your age I would suggest myectomy - HOWEVER only in a well trained center.

          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


          • #6
            Hi Ad,
            If you communicate with Lisa again soon, why not ask her where you can go to find well trained doctors to perform either procedure (separately.) With us Yankees that have a country three thousand miles across and fifteen hundred wide we sometimes have a different view of traveling to different countries then you folks there in Europe.

            Many of us will travel thousands of miles just to be properly evaluated, but will also shrink at the idea of going to a different country to get the care we want. I hear they are doing some wonderful things with HCM in Italy. Maybe they are up to the mark on myectomies also.

            By the way, does health insurance cover going from country to country in Europe to get proper care? I would certainly hope so.
            Burt

            Comment


            • #7
              Lisa,

              I was already thinking that the options my docs have to offer may be dictated by limitations on their side, not by best choices on my side. I'm considering ablation a treatment at best - an artificial heart attack doesn't sound a wonderfull thing to me .

              Would Germany be an option? Or as Burton suggests Italy - although the latter would pose a language barrier for me (mein Deutsch kann sich ansehen lassen ) - i'm conversant in German.

              Lisa, can i PM you details of my docs in NL? You may have a better insight in their international reputation (or lack thereoff ) and thus make my decision making a bit easier.

              Ad
              \"Hope is disappointment postponed\"

              Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

              Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

              Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

              Meds (current) sotalol, dabigatran, furosemide.

              Comment


              • #8
                Sure PM the names I will see if I know any of them. I will also ask around for other options.

                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
                  Burton,

                  As usual, HI coverage in other countries can be arranged, but may be tricky and a lot of paperwork. But yes, NL HI may cover for other countries - e.g. in the late '70, with a lack of cardiosurgical capacity, there was the famous (well, locally of course) heart-bridge to Bern where capacity for open heart surgery was available.

                  Otherwise, London might be a good alternative - at least i understand english, even UK english (but with a local accent i may be lost - US english is easier on my ears - sorry UK folks ).

                  Ad
                  \"Hope is disappointment postponed\"

                  Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                  Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                  Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                  Meds (current) sotalol, dabigatran, furosemide.

                  Comment


                  • #10
                    Hi Ad,
                    Seems to me with the advent of radio, and now very much more so with television, local dialects are becoming more and more a thing of the past. Of course you can still hear it when you find some people ‘amongst their own’, but most of them are now able to speak and understand the more universal tongue also.

                    Personally I think the common market will only help us all in coming up with a universal lingo, and I strongly suspect that ‘universal’ language will be English – it’s happening already – all over the world. Back in 1953 I was able to communicate and find my way through the cities of Japan – and I am a very poor linguist, so I was restricted to my native tongue only. I guess today, were I able to travel, I could find my way – in English – almost anywhere in the world. After all, this old world of ours is shrinking more and more each day, and we just have to talk with our neighbors.

                    Good luck with your search my friend. I hope it turns out to be a simple matter to resolve, and I would appreciate it if you post all about your experiences – and also let Lisa know. I think this little website of ours will more and more become a world wide tool to assist those dealing with HCM, and there will be a number of others who would benefit from your pioneering work in finding proper support in Europe.
                    Burt

                    Comment


                    • #11
                      can you suggest me some doctors for Alcohol Septal Ablation.

                      If you have found some best doctors in Europe, plese suggest me the same as I am also searching for some best doctors in UK and germany. I want those for my father treatment.

                      regards.

                      sudhir.

                      Comment


                      • #12
                        Again, my cardio proposed ablation. He prefers it above myectomy.

                        What would you think, considering my age (41), my symptoms (occasional AF, somewhat less exertion tolerance of 80% vs. normal), gradient of 60, septal measurement of 18mm and wall thickness elswhere normal (10mm). My valves seem good enough, though the aortic valve is obstructed by the septal wall.

                        Am i candidate for any invasive procedure? Guess i can keep about normal life up for some time to go with just BB's. Also, any chance of my AF increasing if i do not go with treatment yet (say 3~5 years from now)?

                        Ad
                        \"Hope is disappointment postponed\"

                        Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                        Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                        Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                        Meds (current) sotalol, dabigatran, furosemide.

                        Comment


                        • #13
                          Unless I've misunderstood, your septal measurement being only 18 mm prevents you from having an alcohol septal ablation. I don't think your septum is thick enough.

                          Reenie
                          Reenie

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

                          Comment


                          • #14
                            AD,

                            Hey ask your doctor why he/she wants to do the ablation and what is the percentage of this vs myectomy. I had my doctor discuss with me what the percentages was and alcohol ablation the sucess was not as great as the myectomy. But as you said maybe they are not as experienced with myectomys.

                            Ask, Ask, and ask again questions. Don't be afraid to ask. It is you body and life and you should know every last detail.

                            Keep us posted on what you are going to do and we will keep you in our prayers.


                            Reenie, I am like you I don't think that alcohol ablation is an option for 18mm. But then again I am no doctor....


                            May God Bless you and guide in the right direction.....



                            Christy
                            I pray that God will place his loving arms around you and hold you in the comfort of his love.

                            Comment


                            • #15
                              Well, thanks for the replies so far.

                              I guess i'm gonna step on the brakes firmly. Unless my doc can give me well founded facts and figures for going with the ablation, it's no show for me .

                              Ad
                              \"Hope is disappointment postponed\"

                              Dx in 2004, first symptoms 20 years ago? Obstructed, A-fib, family history!

                              Combined Morrow and (left atrial) Maze procedures & PVI at St. Antonius Hospital, Netherlands, March 28, 2013.

                              Meds (past) propranolol, metoprolol, disopyramide, sotalol, amiodaron, aspirin, dabigatran, acenocoumarol.

                              Meds (current) sotalol, dabigatran, furosemide.

                              Comment

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