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MarthaLea Find out more about MarthaLea
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  • Abalation

    Not sure which forum to start with, so I'll start here. I joined HCM in 2001 after being diagnosed with IHSS. Depression nearly ate me alive. Topril was so helpful that I began to forget I had a problem. Things got worse and I started hunting for a doctor to help me. I was told I didn't have IHSS.
    Insurance went broke, many problems later I got desparate. Finally, last week I had a new echo and HOCM was confirmed. Mixed emotions, good that I wasn't going nuts as I thought ( inspite of what my husband thinks !) and bad that I am so much worse. They want to do the alcohol abalation. It has not been approved for the hospital in Beaumont, TX but should be within the next six month. Does anyone know about the Houston hospitals? Would it be better there? I'm so ready to do anything, something......... Thanks for just having this website available !!!!
    Diagnosed Dallas, Baylor Med 2001
    Septal Alcohol Ablation Houston 2004
    Scheduled for Myectomy Hopkins Aug 12

    Watch out world, I'm gettin' FIXED!!!

  • #2
    Re: Abalation

    I would be extremely cautious of a center that has not been doing the procedure for an extended period of time and is NOT an HCM speciality center. To know which septal reduction procedure is best for you is a complicated matter to evaluate. When you evaluate the question of who should have an ablation it turns out that it is a very small percentage of people that should truly have this procedure.
    One must evaluate - age - septal measurement, mitral valve, and then see if an appropriate septal perferator can be located - IF all areas are within the proper limits - THEN and only then should the procedure be carried out.. A medical professional who has not seen a great deal of HCM often makes errors in the evaluation of which pt. should have an ablation. Further - medical management should be maximized proir to ANY septal reduction.

    If you have any questions call the office.

    Best wishes and welcome to the HCMA,
    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


    • #3
      Re: Abalation

      MarthaLea, Have you talked to Lisa? Give her a call in the HCMA office. The website is very helpful, as you have mentioned, but it can't compare to a one on one conversation with Lisa. Good luck, Keep us posted. Linda

      Comment


      • #4
        Re: Abalation

        Thank you for the replies. I'm going to call the office in the morning. I'm
        supposed to have an arteriogram (sp?) on Thurs to see if the alcohol abalation is possible, then I would have to go to Houston to have the procedure. I've taken several types of medications, cardizem, verapamil,
        topril XL. The topril worked great for over a year. It doesn't seem to work at all now. Just looking for more information before I decide what to do. I'll call tomorrow. Thanks
        Diagnosed Dallas, Baylor Med 2001
        Septal Alcohol Ablation Houston 2004
        Scheduled for Myectomy Hopkins Aug 12

        Watch out world, I'm gettin' FIXED!!!

        Comment


        • #5
          Re: Abalation

          MarthaLea,
          Lisa is generally in the office on Tuesdays and Thursdays. By all means call her before you inadvertently take a step you would be sorry for later.

          She is a world of HCM information – what to do – where to go – who to see, etc. The final decision on what you do is of course yours, but it is best if that decision is made with the most and best information available.

          If it is possible to postpone the arteriogram until you know what you should really do, I would advise it. I also think a second opinion would be in order before making any precipitous moves. Again talk all this over with Lisa. I think you will be very grateful that you did.

          PS Welcome to the boards MarthaLea. You are most welcome here. I think you’ll find us a congenial group with each others interests at ‘heart.’ There isn’t much in the HCM world that some of us have not experienced and can help guide you through. You are among friends here. Please keep us posted on your progress.
          Burt

          Comment


          • #6
            Re: Abalation

            Call the office and give speak with Kelly - she will pass your number on to me and I will get back to you later today.

            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

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