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[EP study]
Author: Halina (---.philamuseum.org)
Date: 04-09-02 17:12
Has anyone had one of these? I am terrified! I was diagnosed with HCM five years ago just prior to my kidney transplant, so I'm no stranger to tests. This one sounded like torture. My doctor wants me to be evaluated for a defibulator. Is this EP study necessary? I had been coasting along mostly asypmtomatic, but an brief episode of palpitations and my worsening echos have changed the scene. I would be grateful for any info and support anyone could offer. I am being treated at The Hospital of the University of Pennsylvania and live in Philly. Thank you.
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[Re: EP study]
Author: lisa (208.47.172.---)
Date: 04-09-02 17:22
Halina,
At the most recent meetings of the American Heart Association and the American College of Cardiology it was stated, more then once, that the role of EP testing in HCM has little to no value. Too many times patients have "clear" ep studies only to have serious "events" later, in one case 3 months after an ep test that was "clear" a young man died while out with his friends.
I would suggest you take the time to meet with an HCM specialist and evaluate your level of risk. If you are at high risk for sudden death then an ICD is your best bet.
Call the office if you have further questions 973-983-7429
Best wishes,
Lisa Salberg
President
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[Re: EP study]
Author: Bob (---.dyn.optonline.net)
Date: 04-09-02 19:16
Halina,
I was in the same boat as you several months ago. An EP study (EPS) was recommended and Lisa had the same comments. I also found several articles in medical journals that questioned the value of EPS for HCM patients. The HCM specialist I consulted concurred with this point of view, although more than one Electophysiologist did not. To cut it short, I recently got the defibrillator/pacer and never did have the EPS. It's not that I was so horrified at the thought of having this test, but none of the Doc's was able to give me evidence refuting the claims that it isn't warranted. Let me know f I can be of further help.
Good Luck,
Bob
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[Re: EP study]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-10-02 02:26
Dear Halina,
I've had an EPS study. If you truly need an implantable defibrillator, then a qualified HCM specialist will know how to evaluate you without the EPS. The only bad thing about it was the burns on my chest after from the electrical charges.
You should know that you don't feel anything with an EPS. While they say you are "awake", you are heavily drugged and will not have any memory of the test afterwards (if they do it right). There is a tiny risk of not surviving the test, which is under 2%, maybe under 1%.
If you have any more questions about the EPS experience, you can e-mail me.
Sarah
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[Re: EP study]
Author: Mike (---.ne.client2.attbi.com)
Date: 04-17-02 20:36
I'm 21 and I had an EPS test done a few years ago. I have to agree with the person who said that even though you're "awake" you don't really remember any of it. What I do remember is hazy and didn't involve any pain. All in all the test really isn't that bad, even though I know very well how bad it sounds when explained to you! I was terrified! My advise is to just relax....it's not nearly as bad as it sounds.
Author: Halina (---.philamuseum.org)
Date: 04-09-02 17:12
Has anyone had one of these? I am terrified! I was diagnosed with HCM five years ago just prior to my kidney transplant, so I'm no stranger to tests. This one sounded like torture. My doctor wants me to be evaluated for a defibulator. Is this EP study necessary? I had been coasting along mostly asypmtomatic, but an brief episode of palpitations and my worsening echos have changed the scene. I would be grateful for any info and support anyone could offer. I am being treated at The Hospital of the University of Pennsylvania and live in Philly. Thank you.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: EP study]
Author: lisa (208.47.172.---)
Date: 04-09-02 17:22
Halina,
At the most recent meetings of the American Heart Association and the American College of Cardiology it was stated, more then once, that the role of EP testing in HCM has little to no value. Too many times patients have "clear" ep studies only to have serious "events" later, in one case 3 months after an ep test that was "clear" a young man died while out with his friends.
I would suggest you take the time to meet with an HCM specialist and evaluate your level of risk. If you are at high risk for sudden death then an ICD is your best bet.
Call the office if you have further questions 973-983-7429
Best wishes,
Lisa Salberg
President
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: EP study]
Author: Bob (---.dyn.optonline.net)
Date: 04-09-02 19:16
Halina,
I was in the same boat as you several months ago. An EP study (EPS) was recommended and Lisa had the same comments. I also found several articles in medical journals that questioned the value of EPS for HCM patients. The HCM specialist I consulted concurred with this point of view, although more than one Electophysiologist did not. To cut it short, I recently got the defibrillator/pacer and never did have the EPS. It's not that I was so horrified at the thought of having this test, but none of the Doc's was able to give me evidence refuting the claims that it isn't warranted. Let me know f I can be of further help.
Good Luck,
Bob
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: EP study]
Author: Sarah Beckley (---.dsl.mindspring.com)
Date: 04-10-02 02:26
Dear Halina,
I've had an EPS study. If you truly need an implantable defibrillator, then a qualified HCM specialist will know how to evaluate you without the EPS. The only bad thing about it was the burns on my chest after from the electrical charges.
You should know that you don't feel anything with an EPS. While they say you are "awake", you are heavily drugged and will not have any memory of the test afterwards (if they do it right). There is a tiny risk of not surviving the test, which is under 2%, maybe under 1%.
If you have any more questions about the EPS experience, you can e-mail me.
Sarah
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
[Re: EP study]
Author: Mike (---.ne.client2.attbi.com)
Date: 04-17-02 20:36
I'm 21 and I had an EPS test done a few years ago. I have to agree with the person who said that even though you're "awake" you don't really remember any of it. What I do remember is hazy and didn't involve any pain. All in all the test really isn't that bad, even though I know very well how bad it sounds when explained to you! I was terrified! My advise is to just relax....it's not nearly as bad as it sounds.