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  • Important Infomation Needed!

    [Important Infomation Needed!]

    Author: AMY (192.76.86.---)

    Date: 09-10-02 16:21

    I have been doing some research and having been trying to find out if they put ICD's in WITHOUT any symonthems? I can not find anything or anyone in the research that has just had it in for precautionary reasons without signs. I realized that HCM patients have a high risk of Sudden Death, I still can't find why they would put it in for the heck of it. Does anyone know that answer to this one????? Thanks as always,

    Amy

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    [Re: Important Infomation Needed!]

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

    Date: 09-10-02 16:48

    Amy,

    My husband has an ICD put in 2 years ago with only occasional shortness of breath as his only "symptom." However, I have to add that his septal thickness is extreme. We have had varying measurements, but it is at least 3.8 cm. The doctor who put the ICD in at first said he didn't want to do the surgery with only the shortness of breath as a symptom, but he consulted with experts throughout the country, and maybe throughout the world, and decided the implant was a valid prophylactic treatment for someone with severe hypertrophy. I hope that answered your question. By the way, your fiance's name, I love it. I have a son named Shane. Good luck with your decisions.

    Reenie

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    [Re: Important Infomation Needed!]

    Author: Jerry Salzman (---.indy.rr.com)

    Date: 09-10-02 18:52

    Amy,

    Mine was put in because of 2 syncope edisodes. My EP doc said that it was precautionary and he wanted to do it if the insurance agreed. The insurance company agreed.

    Jerry

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    [Re: Important Infomation Needed!]

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

    Date: 09-10-02 19:45

    Dear Amy,

    As Reenie mentioned, extereme hypertrophy alone is going to get you an ICD --anything over 3cm is worth serious consideration.

    Enough episodes of vtach are going to get you an ICD, too, as will a lot of sudden death in the family.

    While most doctors will want to see 2 or more of the 5 known risk factors (all of the above plus fainting and blood pressure problems in a stress test), if any one of them is "big" enough (aka often enough or serious enough), that will do.

    Also, you have to understand that the statistics out there about sudden death are skewed too high from overreporting from the main centers and little to no reporting from regular hospitals of milder cases. So the actual stats on sudden death are closer to 1 or 2 percent of the whole population. Not enough to warrant sticking ICDs in all of us just in case.

    Hope this answers your question.

    S

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    [Re: Important Infomation Needed!]

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

    Date: 09-11-02 11:35

    Amy,

    I went in for an EP study, but I knew going in that I would come out with the ICD. My Dr. pretty much said if I wanted it I would have it. I did have the family history along with a positive EP study so Ins was not a problem. I had a hard time deciding if I wanted the ICD regardless of the outcome of the study prior to the EP study. Seeing your brother die and knowing you have the same condition was tough to swallow. I also have 2 young kids that I'm not ready to leave yet!!

    I decided either way I wanted him to implant the ICD and that he did.

    Good luck to you!

    Julie

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    [Re: Important Infomation Needed!]

    Author: Sharon (---.ph.ph.cox.net)

    Date: 09-13-02 20:29

    Amy,

    I know a family that has lost 5 family members to HCM. They have also been able to trace the gene mutation in their genetic DNA. Tests have been done on the entire surviving family members. One of the family members does not have any symptoms of HCM including abnormal septal measurements. Due to the sudden death ratio in their family a decision was made to implant an ICD. The ICD was implanted this past summer as a precaution. This example is not normal because most families with HCM have not been successful in the DNA test areana.

    Hope that helps.

    Good luck to you!

    Sharon

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    [Re: Important Infomation Needed!]

    Author: robin (---.tnt4.winston-salem.nc.da.uu.net)

    Date: 09-18-02 05:09

    Hi,

    Glad to see your message..

    My father's family has had at least 10 cases of HCM among 13 siblings.

    It has shown up in about 5 of my generation of first cousins, including myslef a newly diagnosed patient within the past 10 dyas.

    I have had 2 first cousins to die suddenly from HCM, I am just beginning to exhibit regular EKG readings and I have two cousins who have it but "have not had any effects" yet.

    There may be more families out there who don't realize the genetic threads. This is such a greta site for helping to spread the word and hopefully help others as it already has helped me.

    robin,

    winston-salem, nc

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    [Re: Important Infomation Needed!]

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

    Date: 09-18-02 13:11

    AMY -

    No doctor I have ever met would just put and icd in for no reason, symptoms vs. family history/genetics may be the issue here.

    if someone has HCM and they have not had any symptoms YET... they have a family history of sudden death and they show signs of the condition...then it may make sense to implant the ICD...ALSO in the very very rare few cases that someone has a gene mutation that is known to hav serious problems (Troponin), and has a family history of sudden death ... a doctor may suggest an ICD. I know of 2 cases like this...this is very rare..yet I would be likely to err on the side of caution in these cases and implant the devices...better safe than sorry...

    hope this helps.

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