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  • myectomy after pacing?

    [myectomy after pacing?]

    Author: Nancy (---.access.naxs.com)

    Date: 07-24-02 10:14

    This is my first posting on this wonderful forum.I had a pacemaker implanted in 1999 for HOCM. I had some possitve results at first but my symptoms have been steadily returning. I was curious if any one has had a myectomy after pacemaker therapy for HOCM? I'm sheduled for a visit with Dr. Lever in September. My doctors here just don't have enough experience with HCM to suit me.I was to have the myectomy here but the surgeon has only done 7, ever. Also my cardiologist here prescribed amiodarone even though I've never had an arrythmia."To help sedate the heart and hopefully relieve symptoms". After seeing the side effects of this medicine and the fact that it is only approved for life threartening arrythmias, I chose not to take it. My GP is wonderful but unfortunately she is not a cardiologist.

    She is referring me to Dr. Lever and my HMO has approved the visit! I've been on many medicines and they usually help short term.And the pacemaker gave some relief for a while. I'm really looking forward to seeing Dr. Lever and would love to hear from any that have benefitted from a myectomy after pacemaker therapy.

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    [Re: myectomy after pacing?]

    Author: susan (---.180-5.vldsgacbds.dial.optilinkcomm.net)

    Date: 07-24-02 10:57

    hi nancy,

    i had my pacemaker implanted berfore i had an ablation. pacemaker worked wonderful for about a week and all my symptoms came back 10 fold. they say the pacemaker only gives you a 50/50 chance of helping relive the symptoms. the goood news about the pace maker is that it actually helped the doctors during the ablation. also i am having an ICD implanted and was told that since i have the pacemaker this will also help with implanting the icd.

    good luck nancy

    susan

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    [Re: myectomy after pacing?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-25-02 21:27

    Hello Nancy and Welcome to the message board!

    Pacing had its day in the sun so to speak but the long term data actually shows only a very few have long term relief of symptoms. (Nancy no where close to 50/50, it is more like 10% and normally only older women have good results with pacing).

    Many members of the HCMA have moved on from DDD pacing to myectomy or ablation. You are going to a very good center that is well skilled in HCM and all your treatment options.

    Best Wishes,

    Lisa Salberg

    President

    HCMA

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    [Re: myectomy after pacing?]

    Author: Judy (---.proxy.aol.com)

    Date: 07-27-02 14:36

    Hi Nancy,

    I am 35 years old. I got a pacemaker in 1995 with not much inprovement in symptoms. I think my gradient then was about 80mmHg. I eventually ended up at Cleveland Clinic with Dr. Lever (I live in southern Ohio). I had a myectomy in 1999. I had a great experience at CCF and my quality of life has improved dramatically. Feel free to email me with any further questions you may have.

    Best Wishes,

    Judy

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    [Re: myectomy after pacing?]

    Author: Maria Martinez (---.proxy.aol.com)

    Date: 07-28-02 23:28

    HI,

    I myself did not have the myectomy however my mom not only had one but two. The second of the two performed at Cleveland Clinic. Dr. Lever is wonderful and my entire family is a case study for them as we are a genetic and malignent family with nobody living longer than 58. My mom unfortunately passed this past January at the age of 52.... I write to you to educate yourself and to only deal with experts like Dr. Lever when it comes to your care. My mom liked her gp and even her cardiologists but their inexperience in performing this surgery resulted in a second surgery to fix the first and premature death. I would not let anybody but the surgeons that Dr. Lever has recommended. She recovered well and quickly from the second surgery performed at Cleveland Clinic. I also advise you to have all your post surgical follow ups with Cleveland Clinic only. I also advise you strongly to insist that your tertiary physicians take all their direction from Dr. Lever and that includes all your medications. Ultimately inexperience by the Indiana medical community and egos created a what was likely a more premature death for my mom. Dr. Lever was and is outraged by her death and the lack of continuity in her care and their lack of exhausting all efforts to use him and his staff for education and direction. My family was recently featured on a local tv station here in Detroit and the segment was so popular that they aired it again a week later... during the filming I found out on camera that I too now have this disease. I wish you all the luck and please remember to stick with the best!

    Maria

    [email protected]

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myectomy after pacing?]

    Author: Sarah B-Board Moderator (---.ipt.aol.com)

    Date: 07-29-02 00:52

    Dear Maria

    I'm very sorry for the loss of your mom. You bring up a very good point about coordinating care. If you don't feel that the local doctors are taking direction, then they need to be taken out of the loop. However, many local doctors are all too happy to have a specialist take the lead in cases like this. It is a tragedy that this was not the case for your mom.

    my thoughts are with you and your family.

    Sarah

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myectomy after pacing?]

    Author: Lisa Salberg (---.dyn.optonline.net)

    Date: 07-29-02 20:24

    Maria,

    Your comments are well taken and I too am sorry to hear of the lack of care your mother recieved. I commend you on your efforts to tell the story of what happened and inturn help others.

    I have said so many times to so many people you may "like" their local doctors but they lack the experience with this condition to provide the BEST care for you. Seek a specialist that will work WITH your local doctor to provide the best care possible.

    Hope to see you more on the message board you have great insight to share.

    Best wishes,

    Lisa Salberg

    President

    HCMA

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    [Re: myectomy after pacing?]

    Author: Maria Martinez (---.proxy.aol.com)

    Date: 07-31-02 16:46

    Lisa,

    It is very much therapeutic if nothing else to participate with this forum. I myself have only recently been diagnosed with this condition. I know better than I would like to say about burying way too many people from this condition. My mother had six children and three of us are affected myself being the latest to be diagnosed. I am the oldest at 34 and the other two are 28 and 25. I have many cousins who were diagnosed in their teens and one in particular who is now 9 years of age. My family presents with what is referred to a genetic and malignent form of this condition with most treatments available proven to be unsuccessful thus far. I think the only difference between me and my mom is that I know my enemy by name and much sooner than she did. Coordination of care is critical to management of this disease and education clearly improves the quality of care received. My efforts so far to promote awareness locally have proven to be quite successful. I believe this success is greatly attributed to my profession in the medical field of 12 years. I have exploited every connection and every contact to not only raise awareness but funds for research. I have just begun sending funds to Dr. Lever and the Cleveland Clinic. The first round of checks have just been sent and I will not stop until we find a cure. I have operated very independently up to this point but hope to work with your association and a few others to support our cause.

    Thanks for the very warm welcome!

    Maria Martinez
    NOTE: This is a post from the previous forum message board.
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