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Gary Jackson Find out more about Gary Jackson
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  • percentage? treatment?

    Does anyone know the percentage of people with HCM that have to go under either a myetomy or albation?

    What is the treatmeant for no obstructive hcm after drugs if suguery is performed on them?

    thank you

    Gary

  • #2
    Hi Gary,
    The way I hear it, since a myectomy or an ablation are used to ‘cure / resolve’ an obstruction in the heart – specifically interference with one or more valves – if you are not obstructed to begin with, what the heck is the procedure going to cure?

    This does not mean there are no other surgeries that might be of use – the implantation of an AICD for example – or a heart cath to open blocked arteries, etc, etc, which are aimed at resolving or controlling other issues.

    For the unobstructed HCM patient, in overwhelming preponderance the treatment is the use of drugs to control symptoms. For the few who reach ‘burnout’ where the heart muscle becomes too stiff to perform properly, a heart transplant may be in the offing – but only a few of the unobstructed HCM patients reach burnout, and heart transplant, although becoming more common, is still a rather rare occurrence.

    In the Jewish religion we are taught that it is wrong to ‘abuse’ the body after death, but the stricture to save human life and suffering carries much more weight – in fact it is of the highest order. It is for this reason that, although I have many ailments, once I die any part of me that can help someone else to a better or longer life – well, they are more then welcome to it. I carry the notation ‘donor’ on my driver’s license – and I encourage everyone to follow suit. The living needs all the help they can get, especially when we are done with whatever they need.
    Burt

    PS As far as percentages go – I don’t think anybody has the real numbers, but I can tell you that 17.6859 percent of the people with undiagnosed HCM make up their own statistics, while only 8.5943 percent of the people with diagnosed HCM make them up.

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    • #3
      Thank you for the wonnderfil explanations to my questions Tome this is very overwhelmmig at this time so just trying to ank questions as they pop in head.
      so the problem ith NON obstructive is the stiffing of the venticles because the heart is working so hard and this my eventually lead to a transplant.
      My echo said that everyhting was fne expect the concentive LVH so i would guesssd i would be non obstructive as the valves are fine?

      thank you again

      Gary

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      • #4
        Gary,

        There are many treatments for non-obstructed HCM including various medications, devices and in the rare case a transplant.

        Septal reduction is only for those with obstruction that can not be managed by medication. In the past 45 years there have been 3000 myectomies world wide - in the past 9 years there have been 3500 alcohol septal ablations. There is significant question in the HCM community why the explosion of procedures. Especially when the long term effect of ablation are clearly "unknown" based on the limited experience in terms of years.

        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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