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  • chit chat with cardioligist

    [chit chat with cardioligist]

    Author: Bobby (---.tnt2.corydon.in.da.uu.net)

    Date: 01-05-03 09:40

    Hi,

    JUst wanted to share a discusion I had with a cardiologist. In INDIANA . He told me that HCM is a very contraversy subject.He said many docters think they have the answer. But with everyone's answer there is someone else to put it down.He told me all he does with HCM patience is pace them and load em up with beta-blockers.

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    [Re: chit chat with cardioligist]

    Author: Reenie (---.snbrca.adelphia.net)

    Date: 01-05-03 10:04

    WHAT?!? He thinks the only answer to HCM treatment is beta blockers and pacing?!? Sounds to me like you need to see another doctor, ASAP!

    Just my two cents.......

    Reenie

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    [Re: chit chat with cardioligist]

    Author: Bobby (---.tnt2.corydon.in.da.uu.net)

    Date: 01-05-03 10:44

    OH I'm not seeing this guy I just ran into him one day and started talking.

    I'm going to Dr.Lever in Feb

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    [Re: chit chat with cardioligist]

    Author: hjo (---.fai.acsalaska.net)

    Date: 01-05-03 11:20

    unfortunately that seems to be the general consensus among alaskan doctors as well. it's rather disheartening.

    we too are going to see Lever this spring.

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    [Re: chit chat with cardioligist]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 01-05-03 11:23

    Dear Bobby,

    Well, the guy has it half right----betablockers are good. Pacing is VERY controversial and generally disregarded completely by those in the know. It was very big in the 90s but has been found to be more of a placebo effect than anything else.

    If you have this guy's name and address, you can e-mail them to Lisa and she can send him a packet on HCM.

    NOTE TO THOSE WITH PACEMAKERS: THere are MANY reasons why you would have a pacemaker and I'm ONLY talking about 1 use in particular. Pacemakers are very excellent devices when used correctly and many of you with HCM have them BUT not for your primary treatment. Just so we're all clear on this. Pacemakers in ano of themselves are NOT controversial.

    Thanks,

    S

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    [Re: chit chat with cardioligist]

    Author: Reenie (---.snbrca.adelphia.net)

    Date: 01-05-03 13:33

    S

    I know that pacemakers are good for some people, but to say that all with hcm should be paced, well, I guess I didn't know that was an older way of thinking. Guess I just didn't know they ever did that at all, let alone just because you have hcm. What if you have hcm and don't have any arrhythmias? Would they have paced you anyway?

    I agree that beta blockers are good meds. However, I do know that they aren't the best treatment for all patients. Not everyone is alike, so treatment shouldn't be across-the-board just because you have hcm. Thanks for letting me "talk."

    Reenie

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    [Re: chit chat with cardioligist]

    Author: Robert Hartwell (---.focal8.interaccess.com)

    Date: 01-05-03 16:52

    Reenie,

    Pacemaker therapy can be used on people with HOCM who don't have arrhythmias. The working theory is that the pacemaker is used to contract the right ventrical a fraction of a second prior to the left ventrical. Some studies have shown that this "treatment" is successful in reducing pressure gradients and obstruction symptoms. This was the course of treatment my cardio was recommending for me prior to my seeing Dr. Lever in Cleveland.

    It is this use of pacing, which Sarah indicates is controversial.

    Bob

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    [Re: chit chat with cardioligist]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 01-05-03 17:02

    Hi guys,

    At the International Summit this past fall, there were two presentations about pacing for HCM/HOCM and both agreed that those studies were mostly placebo effect and the pacing "treatment" is of dubious benefit in long term treatment. I don't think anyone disagreed that was in that room. 116 of the top of the top.

    S

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    [Re: chit chat with cardioligist]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 01-05-03 17:03

    Ok, some of them may have disagreed, but if they did, they didn't say so. And some of the early studies they talked about were actually LAUGHED at.

    S

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    [Re: chit chat with cardioligist]

    Author: Art Geddes (---.ok.us.prserv.net)

    Date: 01-05-03 18:06

    Hi everyone, I'm new here so won't go into our live story except to say that pacing has had some effect for me. It has not decreased my gradient or thickness, but before pacing I had a 2+ mitral regurg and pacing has reduced that to a trace. Pre exciting the septum has evidently allowed the leaflet to return to place earlier and fuction more properly, but I cant't walk more than a hundren yards now without exteme chest pain and sob, bad enough that i have to stop for several minutes to rest. I have been paced since march 98 when i got my icd. As things go, everyone is different.

    Art Geddes

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    [Re: chit chat with cardioligist]

    Author: Sarah B--Board Moderator (---.client.attbi.com)

    Date: 01-05-03 19:15

    Dear Art,

    I'm glad pacing has helped you, but I'm sorry you are having a tough time. Are you seeing a specialist?

    I really didn't want to open up a thread on pacing here, just wanted to point out that this doctor in question's one disease-one treatment protocol is for the birds.

    Take care and welcome,

    S

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    [Re: chit chat with cardioligist]

    Author: Linda, Bd of Directors (---.wmnsmd.adelphia.net)

    Date: 01-06-03 03:44

    Back to the original post, it seems as if this was a very casual conversation, 2 people talking, one a doctor and one a person affected with HCM. It was not a doctor treating his patient, wasn't it - Bobbie? It may be that this Dr knows his limitations and he refers to an HCM specialist if someone doesn't respond to pacing and beta blockers. There would be nothing wrong with that. Fact is, some people require minimal treatment. Could be that he has seen patients who do respond favorably. Maybe he hasn't seen that complicated case yet. Remember that the general practice of cardiology only sees about 1-2% or less of their patients for this problem. That was the problem with original statistics coming from speciality centers. They were only seeing patients with the most severe problems. Their numbers made the prognosis look much worse because only the worst of the worst were included in the numbers, not the "average" HCM patient. "Average" were not going to the speciality centers, so were not in the numbers. Linda

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    [Re: chit chat with cardioligist]

    Author: Richard Miller (---.cae.bellsouth.net)

    Date: 01-07-03 05:00

    I have heard that that pacing works about 30% of the time in lowering gradiant in out flow tract. It did for me my gr was 80 resting and now is in single digits during val-salvo. If its a placebo effect thats cool all I care is that it is lower.

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    [Re: chit chat with cardioligist]

    Author: vickie (---.se.client2.attbi.com)

    Date: 01-07-03 09:44

    Pacing has also reduced my gradient from >200 provocable to next to nothing, but do I feel better? No, no difference- still the same symptoms and on Atenolol, Cardizem, and Norpace. Do I wish I never had the pacer? Probably so because there was an obstruction pre-pacer that maybe would have made me a candidate for the myectomy. Now without the pacer, there is no obstruction. So the way I look at at, the symptoms are still there but there is one less treatment option. Make that 2 if you consider ablation as an option that no longer exists also.
    NOTE: This is a post from the previous forum message board.
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