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Ablation???

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sueb My cardiomyopathy is caused by Fabry Disease. Find out more about sueb
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  • Ablation???

    My cardiologist is recommending an alcohol ablation based on my pharamcological stress echo which showed a peak baseline (resting) outflow gradient of 9 and a peak outflow gradient of 144 when reaching the maximum predicted heart rate.

    A paper I found on the internet by the German ablation specialist Seggewiss has a unreferenced statement that says: Furthermore, hypertrophic cardiomyopathy without resting, as well as provocable outflow tract gradient, is a clear contraindiciation for [alcohol ablation].

    Is this anything that anyone has experience with or knows about?

    I am a 64 year old Fabry patient with hypertrophic cardiomyopathy most likely caused by the Fabry.

    Sue

  • #2
    Re: Ablation???

    Dear Sue,

    Fabry's is a whole other kettle of fish. Did you know that there is now a genetic treatment for Fabry's??? Please do a search on the site for Fabry or call Lisa b/c she can put you in touch with the people you need to talk to.

    RE: Ablation in general: My feeling is that you should always get a second opinion whenever anyone wants to remove a piece of your body.

    But Segeweiss is the formost expert in the ablation field and if that is his call, I'd believe it.

    Norpace reduces gradients, but I don't know if you need a resting gradient for it to work or not, but is certainly worth talking to someone about.

    However, I would get the Fabry's treatment FIRST and then see if you actually need to have anything else done.

    Good luck,

    S

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    • #3
      Re: Ablation???

      HOLD THE PHONE....

      This is a complicated situation... Fabrys ..and ICD that has fired..and NOW thoughts of septal reduction....

      I think a visit to a specialist - or 2 may be in order. This is not a typical case... I would not make a move until I had at least 2 HCM experts agree on a treatment path. Am I over protective...yeh maybe but better safe than sorry....


      Call me if you need to chat.

      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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