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    Hi Everyone
    My name is Tara and I beleive that my mother has recently posted regarding some chest pains I was having this past weekend. My life with HOCM thus far has been short as I was only diagnosed less than three years ago. But since than I have been placed on medication taken off medication, had an ablation and than a myectomy. At which time a pacemaker was implanted. As my mother has mentioned that I have not been feeling well for the past couple of months. I am not always having a rough day but they seem to be much more frequent now. I was just wondering if there is anyone out there that has had an ablation or a myectomy and is still having reoccuring symptoms. I know that we all have good and bad days but this is more than that.
    Tara -alcohol ablation 2000, myectomy 2000

  • #2
    Hi Tara, Unfortunately, the good days/bad days scene is very much a part of living with HCM. You know your body better than anyone and you seem to be describing a definite change in how you are feeling/functioning. I know Dr Wigle will want to do some more testing to see if your heart is showing some changes. It may be time for a change in meds, pacemaker settings, etc. You've had an awful lot happen in the past 3 years. When do you see Dr. Wigle? I'm sure it won't be soon enough when you're feeling so bad. I take it you're home and waiting for that appt? Glad to hear from you, keep us posted. Good luck, Linda

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    • #3
      Hi Tara,

      I am three months post-myectomy and had been doing beautifully up until last week. I started experiencing chest pain, SOB, dizziness, and lots of palpitations. So we are currently checking into what could be the cause of my symptoms. My meds have been increased, which has helped some, but we are also looking at the possibility of ICD placement.

      So, to answer your question, yes, I am experiencing recurring symptoms. I was very upset at first, but I've had a week to deal with it, so I'm handling it a little better now. I hope that they find out and are able to correct whatever is causing you trouble.

      D
      HOCM, Septal Myectomy 10/02 (Mayo Clinic), Medtronic ICD 10/07, TIA 10/07

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      • #4
        I will simply say this - HCM is a chronic condition.. treatments may relieve symptoms but others will likely still be there. the best we can do is clearly ID our symptoms, discuss them with our doctors, work with them to create a custom program that helps YOUR symptoms...there is a great deal of trial and error...it takes time to get things balanced...and sometimes when you do...little things can set it off again...
        Dr. Wigle is a good guy..work with him TALK to him and keep tring
        We are always here for you,
        Take care,
        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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