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ELECTROPHYSIOLOGY STUDY

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  • ELECTROPHYSIOLOGY STUDY

    [ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-07-02 00:10

    AFTER SEEING DR. LEVER IN CLEVELAND, HE INCREASED MEDS AND SAID HE WOULD SEE ME ONCE A YEAR AND TO CONTINUE TO SEE LOCAL CARDIOLOGIST HERE FOR REGULAR VISITS. I HAD FIRST APPT. IN INDIANAPOLIS AT ST. VINCENTS HEART CENTER THIS WEEK WITH A CARDIOLOGIST I REALLY LIKED AND HE SEEMED TO BE KNOWLEDGEABLE ABOUT HCM. HE WANTS ME TO HAVE A CONSULT WITH ANOTHER DR. ABOUT HAVING A ELECTROPHYSIOLOGY STUDY DONE. I HAVE NOT HAD ONE OF THESE DONE YET, BUT UNDERSTAND DUE TO SEVERAL FAMILY MEMBERS DYING SUDDENLY I MIGHT BE A CANDIDATE FOR AN ICD. I HAVE READ ABOUT THE STUDY, BUT ARE THERE ANY RISKS INVOLVED? I HAVEN'T READ ANY STATISTICS ON THOSE. THANKS FOR YOUR HELP. CLAUDIA

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    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-07-02 01:29

    Dear Claudia,

    ICD placement is no longer based on EP studies. Your local cardiologist should be consulting with Dr. Lever, not with another local guy --that obviates the whole point of seeing Dr. Lever in the first place.

    Dr. Lever is one of the best doctors in the US for HCM, if not the world. If he thought that you were a candidate for an ICD, he would have told you. Does he know about the family history? The risk factors for sudden death are a septal wall thicker than 3cm, ventricular tachycardia, fainting, the wrong blood pressure response to an exercise test and a family history of sudden death. You would need to have several factors to be a candidate or just have a lot of vtach (usually ---everyone is different).

    There is no advantage and some risk involved in an EP and those up on HCM are not using them to determine ICD placement. Yes, you can die during an EP study and they can be negative (as in no bad rhythms) and still die suddenly from HCM, so there is no theraputic or clinical advantage to getting one.

    Please have your local doctor talk to Dr. Lever asap ---

    Sarah

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    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-07-02 08:50

    Claudia,

    I had my ICD implanted at St. Vincent's and I believe they know what they are doing with ICDs. I went to the Cleveland Clinic for my myectomy surgery because St. V does only 3 myectomies a year. They implant a fair amount of ICDs although I never asked how many. Also, because the doctor mentioned the EP study, you may not actually have one. WIth me the EP doc decided to place the ICD without the study if the insurance agreed which they did. So you may not have an EP study.

    I sent you an EP doc recommendation off line. Also, if Dr. Lever increased your meds and you just saw a St. V doctor, who were you seeing before?

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    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-07-02 10:29

    A reminder here... and food for thought...Hospitals to not provide treatment...doctors provide treatment. There are many docs in each center and you should be aware that one persons experience with a hospital...is really the experience with the doctor...so compare apples to apples...

    Further...

    What Sarah said about EP's is rather true, they hold little if any value for those with HCM, I would call Dr. Lever and ask him the ICD question and ask his opinion on the EP study.

    If you have had family members with previous S/D...that is a risk factor, I do not know how many others you have.

    Best wishes,

    Lisa

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    [Re: ELECTROPHYSIOLOGY STUDY]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 09-07-02 23:14

    Well, It looks like everyone of my cardiologist believe that this EP study will give the results that they need. My local cardiologist said that he would feel better if I just had the ICD implanted. But he is leaving the final answer up to the Guys in Gainesville.I am still awaiting the response of the insurance company for M.Maron in Boston. I hope I know soon! Does anyone know how long it typically takes for a referral to go through an insurance company?

    I am a bit scared about Monday though I am not sure what I want this test to come out to be. I guess this is to be expected. But I am still getting over the shock of having a "clean" bill of health and then an hour later told that I may need an ICD. Guess that is a part of life! Anyhow thanks for everyone's imput. Keep your fingers crossed for Monday and hope all will go well for me1

    Mary

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    [Re: ELECTROPHYSIOLOGY STUDY]

    Author: Bob (---.dyn.optonline.net)

    Date: 09-08-02 00:38

    Hi Claudia,

    I suggest you use the Search feature of this board and do a Subject search for the phrase EP Study and again for Electrophsiology Study. There have been many prior postings on this subject (I posted one on 4-9-02). I am in total agreement with Sarah and Lisa on this issue, as is the HCM Specialist that I see periodically. I did get an ICD, and though the Electrophysiologist suggested doing an EP Study, I did not have one. Any questions, just ask here oe e-mail me if you prefer.

    Good Luck,

    Bob

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    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-08-02 03:06

    Dear Mary,

    If you really think that an EP is in your best interests, then remind the doctors that you want to be heavily sedated for the procedure. You are "awake" in that you are not given a general anethetic, but they can give you enough valium-like stuff to keep you from minding what happens as well as wiping any memory of the event from your brain --and trust me-- this is what you want to have happen. Everyone is usually given some medication to make you groggy, but you sometimes have to be very clear about what you want. I told them to make me "oblivious" and they obliged me very nicely.

    Yes, I had an EP. I went back and forth and back and forth --and this was in 1996!! I was pressured by my doctors, my husband, everyone, except my parents. They had turned down an EP for my mom since there didn't seem to be any use for it. I capitulated b/c of my husband's worries about our future, etc, etc. If I had to do it over, I would not have done it.

    I have a question: let's say you have 3 of the 5 risk factors for sudden death but the EP study comes up negative? are you going to refuse an ICD? What if you have 2 risk factors and the test is negative? What do you do then? (negative means that they could not induce v tach.) If the EP is positive, then you get an ICD, but you've already been told you should have one anyway, right? So why are they doing this test?

    I don't mean to harang you, but I have a little sore spot about this test.

    S

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    [Re: ELECTROPHYSIOLOGY STUDY]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 09-08-02 07:27

    Sarah,

    I honestly don't think an EP test will really decide anything. I have already told them that if I need an ICD done that I want it sooner rather than later because school and work issues and it would be one less thing to worry about. My local cardiologist still isn't seeing a whole lot in this but he said that if I don't get it down here that when I see Dr. M.Maron that it would probably be done there. He said that it wasn't not a matter of if I was getting it but when. Oh well go figure! I have a funny feeling that the insurance company is wanting it before the procedure.

    Mary

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    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-08-02 11:23

    Mary,

    Here is my take on the situation, if you feel that your doing what is best, go and have the EP test done, just do not expect any great new answers waiting for you post op. If you are not sure that you want to do it...cancel the appointment and reschedual it for a later date.

    EP test are not without risk...but they are also very safe. I do not think you are in any danger doing it, but I really do not know what you will gain.

    I do believe your docs are attempting to help not hurt, but again just not sure what there is to gain here.

    Best wishes and whatever you choose to do we are behind you 100%!!!

    big hug,

    Lia

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    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-08-02 11:25

    Dear Mary,

    Why is your cardiologist presuming to decide what another doctor will or will not do? Dr. Maron is an HCM specialist and, frankly, I would want to know his opinion on an EP before I agreed to one. And, even more frankly, if I had to have someone _do_ the EP, wouldn't you rather have someone at Tufts who has done a million of them instead of the local guys who have done not so many?

    If your local doctor thinks that Maron's office is going to do it anyway, then it is easy to just say "well, then I'll wait." You are in a POS, right? So the insurance should be happy to pay for the ICD. You can call them and ask them what their policy on ICD approval is --they will have it and they have to tell you, too.

    Is getting an EP now really going to speed up the process of getting an ICD if you are already going to wait and have it done by Dr. Maron anyway? I'm just trying to work through the logic of the situation.

    Hang in there, whatever may come,

    Sarah

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    [Re: ELECTROPHYSIOLOGY STUDY]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 09-08-02 22:04

    Logic! You mean there actually is logic to all of this. I must have been the last to know on all of this. Anyhow thanks for all of your iinput. I am going to go ahead and have it done. With all of the new stuff coming up with the insurance here at Disney I am not sure if this other referall will even get approved now. I really do hope this all goes well!

    Lisa, thanks for the hugs they do mean alot right now. If I didn't have my friends I would be totally lost. So thanks for all that you guys do!

    Mary S.

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

    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-08-02 23:21

    Dear Mary

    Good luck, and let us know how it went when you get back.

    S

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

    [Re: ELECTROPHYSIOLOGY STUDY]

    Author: Mary Sharp (---.proxy.aol.com)

    Date: 09-09-02 06:32

    Will Do! Hopefully things will go well and I can put this test to rest! And my drs. bickering!

    Mary S.

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    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-18-02 05:32

    Do you know the probablility of placing an ICD when the only eal risk factor is a STRONG family history of Sudden death? -- excellent blood pressure levels, no real shortness of breath, etc.

    and if you don't have an ICD inplanted what would be the treatment other than toprol?

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

    [Re: ELECTROPHYSIOLOGY STUDY]

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

    Date: 09-18-02 12:37

    Dear Robin,

    Everyone with HCM is different and there is no standard treatment, really. There are a stable of drugs to choose from and a couple of surgical procedures and ablations, pacemakers and ICDs. That is about it for now, but most people do well on medications and the procedures to reduce gradient or remove obstruction help quite a bit. None of us can say what your treatment should be since we are not doctors--and we are not _your_ doctor, which is even more important.

    But yes, I know of at least one case where someone with only family sudden death as a risk factor got an ICD, but this is rare.

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

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