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For those considering ablation, I'm 5 years post procedure

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  • For those considering ablation, I'm 5 years post procedure

    Hello:

    For those considering ablation, I want you to know I'm 5 years "out" and doing very well. I just turned 49. I had two ablations done, 6 months apart in 2000, and have felt great ever since. I went to Houston and was treated by Dr. William Spencer. For some reason, the first ablation didn't take-I initially felt better but my gradient quickly returned. He reablated the same artery and my gradient remains below 20, it was 100+ at rest prior to my procedures. I did not need a pacemaker. While I was in Houston, I connected with two other patients of Dr. Spencer's and they are both doing well too. Since the procedure has now been done for about 10 years (it began in Europe,) more long-term data is available. I encourage everyone to research options before they consider what to do. The teenager who followed me at my second ablation had had a myectomy done 10 years prior....His symptoms had returned and he was now going down the ablation route. For me, open heart surgery was a road I didn't want to take...but I realize everyone needs to make up their own mind. Prior to my ablation, I saw two MDs at the University of WA and one felt strongly I should have an ablation and the other said a myectomy was the way to go! I researched the procedures, prayed a lot and in the end, made my choice. I lead a very active lifestyle, go to aerobics classes 3-4 days a week and no one would know I could barely get up my stairs 6 years ago. I was even considering moving into a one story home. My advice: pray about your choices, read the literature, and choose a VERY experienced MD!
    Laurie

  • #2
    Laurie, Thanks for sharing with us. It's always great to hear someone's good news. I hope you will continue to give us updates. Best wishes!Linda

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    • #3
      Laurie

      Just wanted to wish you luck and i'm very happy for you

      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


      • #4
        Thank you for sharing your story. I'm glad that you are feeling so well.

        Reenie
        Reenie

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

        Comment


        • #5
          I had two ablations done, 6 months apart in 2000, and have felt great ever since. I went to Houston and was treated by Dr. William Spencer. For some reason, the first ablation didn't take-I initially felt better but my gradient quickly returned. He reablated the same artery and my gradient remains below 20, it was 100+ at rest prior to my procedures.

          Do they ablate the arteries?
          During an Alcohol Ablation, I thought they only ablated the myocardial mass in the left ventricle.

          Confused by this.

          Thanks for any information.



          ***EDITED TO SAY:---Okay wait a minute, now I understand ---- I believe you had a Radiofrequency Ablation done. That is not anything like an Alcohol Ablation, just so everyone here knows.

          An Alcohol Ablation and a Radio Frequency Ablation are 2 VERY different procedures.

          I also had a Radiofrequency Ablation done on me 2 years ago, and I would never ever let the EP doctors do that to me again. Ever since they cauterized my heart, I have been doing worse. I'm glad you are doing better. In my personal opinion, I do not think it is wise for a HCM heart to be burned or cauterized because of the myocardial disarray. But like I said that is only my opinion.

          I wish you continued good health.

          Eileen
          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


          • #6
            She's talking about alcohol septal ablation. You can look here to see how it works. They use a small catheter to first block off a small artery, then they administer the alcohol.

            http://www.clevelandclinic.org/heart...hcm/movies.htm

            Reenie
            Reenie

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

            Comment


            • #7
              Okay, I stand corrected.

              Thank you for the video link, it showed me how this is done.

              I did not know that Alcohol Ablations have been done for 10 years, my understanding is that they were fairly new.

              What threw me off was when she said that her artery was ablated again.
              And, I have never heard of anyone having 2 Alcohol Ablations done before.

              I should shut my big mouth next time.


              Eileen
              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


              • #8
                Oh, Eileen. You don't need to be quiet. I was just letting you know what she meant. I think sometimes if they don't administer enough alcohol the first time they may have to go in and do the ablation again.

                Reenie

                PS: I learned what I know about the alcohol ablation from one of the annual meetings in Jersey. It was one of the presentations from one of the experts.
                Reenie

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

                Comment


                • #9
                  I had alcohol ablation done

                  Just to clarify...

                  The ablation I referred to was alcohol. Dr. Spencer injected the same artery twice.
                  Laurie

                  Comment


                  • #10
                    Eileen,

                    No need to be silent! There are many cases of multiple ASA's I am aware of one case of a man who had 3 seperate procedures only to move on to myectomy. I know at least 25 people who have had 2 or more attempts. Some were successful in achieving the goal of gradient reduction others were not.

                    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
                      I thought that with an Alcohol Ablation, they went in through the ventricle not an artery.

                      I stuck my foot in my mouth, next time I'll wait for information before jumping to conclusions.

                      Sorry
                      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


                      • #12
                        Re: For those considering ablation, I'm 5 years post procedure

                        Hi Laurie,
                        I am so happy for you! I had an alcohol ablation six months ago. The MD was not happy with the results. My gradient was decreased some but not as much as he thought it should be. He hasn't mentioned a second ablation and so I wasn't aware that it could be done more than once. Did you use the same MD for your second ablation? My doctor says I should think about applying for disability.

                        Rose

                        Comment


                        • #13
                          Re: For those considering ablation, I'm 5 years post procedure

                          Rose,
                          If you have not had ample reduction in your gradient there are a few things that should be looked at before you try again. While many doctors are doing ablations at this time, not all are very clear on all of the potential variants of HCM. Some people have "good anatomy" for an ablation, others do not, this is a critical factor when making a choice. I wish I could say all doctor could point out who has the correct anatomy and who does not all the time, I even wish I could say that I thought they could do it 50% of the time, but in non-HCM centers I do not see that as the case. I have seen cases where upward of 4 attempts were done, never reducing the gradient and causing larger and larger scars. In these cases the anatomy is just not right and it is never going to work.

                          What makes good anatomy vs not good anatomy for an ablation - the condition and size of the mitral valve, the amount of hypertrophy, the location of the first septal perferator and location of the point of obstruction.

                          Now before you concider having a 2nd ablation done I would seek an opinion from a doctor who specializes in HCM. There are not many of these docs in the country and you maybe able to do a chart review and let someone look at your echo and give you an idea of your options if you are unable to travel to a center.

                          Now some people think that if you go to a center that does surgery that is what you will wind up with... this is not the case - your options will be presented and you will make the choice that is best for you based on your age, symptoms, anatomy and person choice.

                          If you have any questions please feel free to call the office.
                          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

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