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LV debulking operation

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  • LV debulking operation

    Hello:

    My name is Shirley (53 years old) and I am from the island of Barbados in the West Indies - I should be going to the Cleveland Medical Centre - maybe in Florida - for a second opinion to see if a LV "debulking operation" would be feasible in my case. This is what my Cardiologist here suggested. I would like anyone to explain to me exactly what is that and especially anyone that had that operation. I am really looking forward to an early response. This is my first day on this site. Thank You.
    \"With God all things are possible - remember He is still in the miracle business - just trust Him and keep the Faith\"

  • #2
    Re: LV debulking operation

    Welcome to the message board! We are glad you have joined us and hope that you get some answers. You might try calling the HCMA office on Tuesday or Thursday to speak with Lisa, or send her a private message (PM)...she can answer some of your questions and help you get connected to the Cleveland Clinic in Florida, too.

    I have never heard of a "debulking" procedure...but it is probably a myectomy. Do you know what your echocardiogram measurements are? There are a lot of posts on the message board for myectomy and if you do a search on that word you will find a lot of answers. Plus the rest of the web site is a treasure of information. Please spend some time digesting some of that information, too.

    Good luck on your search for answers, you are in the right place!
    Best Regards,

    Sharon

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    • #3
      Re: LV debulking operation

      I believe you may as your doctor directed you this way be referring to Dr. Batista's procedure in which a wedge of the ventricle is removed. It is from what I have read and from what I have learned is highly experimental in todays standard of care and also when I last checked the mortality rate was high. This was developed in South America. A call to Lisa is certainly something you need to do . She can direct you to the gold standard of care and the right interventions for you. Best Wishes and welcome. Pam
      Dx @ 47 with HOCM & HF:11/00
      Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
      Lead failure,replaced 12/06.
      SF lead recall:07,extracted leads and new device 2012
      [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
      Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
      Genetic mutation 4/09, mother(d), brother, son, gene+
      Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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      • #4
        Re: LV debulking operation

        Shirley, you are going to a good place. The Cleveland Center is really good and you will see doctors there who know how to take care of you. Good luck and welcome to the HCMA.

        Reenie
        Reenie

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

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        • #5
          Re: LV debulking operation

          The procedure you are refering to is a myectomy - (it removes the bulk from the septum) - please search on the message board for myectomy and also look under the treatment link on the website.

          You will have to travel to Cleveland Clinic Ohio as they do not do the procedure at the Florida center.

          Call the office if you have any further questions.

          Best wishes,
          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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          • #6
            Re: LV debulking operation

            Thank you very much Lisa - and believe me - I have been checking the board - infact it took up most of my time yesterday - I have really learn a lot - thank you and everyone that have responded very much.

            Shirley
            \"With God all things are possible - remember He is still in the miracle business - just trust Him and keep the Faith\"

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