The use of EP study in those with HCM.

[Reenie]

I promised to get this information to you who would like to know:

Dr Stephen Winters was asked to detail the usefulness of EP studies in those with HCM. He said that there is "little to no usefulness at all in an EP study to determine sudden cardiac death in patients who haved HCM." The best practice to determine whether or not a patient with HCM needs an ICD placed it to discuss your personal risk factors with your specialist. An EP study may result in patients getting ICD's who do not need them. Remember, these devices are about $20,000 for the ICD alone, not including the surgery, hospital care, or anything else related to the implantation.

The surgery itself isn't tremendously complicated and even though the risks are low, they aren't negligible.

If anyone wants more information, please post and I will try to get more from the doctors while we are here, but this was the core of the electrophysiological portion of the program today.

Reenie

[Laoshur]

Thanks, Reenie,

I really appreciate your posting this. I will refuse the study - I pretty much already told them that in an email - unless they can come up with another reason for doing one.

Thanks again,
Rhoda

[Reenie]

Rhoda, you're welcome. I'm glad I was able to get the info for you!

Reenie

[Lisa Salberg]

Just a fast word of caution... prior to saying NO to the EP study be clear as to WHY they are doing an EP study. If it is soley to check for your risk of SD - well thats not very valuable - however there maybe some other reason that may be very reasonable...

Best wishes...off to the Golf outing for me!

Lisa

[Laoshur]

Thanks, Lisa,

I asked for further information on the reason for the EP exam a month ago. At the same time I only said that I did not want it if it was solely for the purpose of determining whether I needed a defibrillator. So far I have heard nothing, so I don't know what to think. I looked back at the original message and it certainly seems that it says that the purpose of the EP exam is to determine the need for an ICD.

Thanks for checking,
Rhoda

[Brownie]

Reenie:
Thanks for this information...it's very timely for us since the specialists are pushing for Olivia to have an ICD placed ASAP. The hospital wanted her to see an electrophysiologist tomorrow, but since my husband is out of province until the weekend, it has been deferred until June 17. We have been told that appointment is a consultation only, but if they seem to want to do EP testing only to determine her suitability for an ICD, we'll now know to refuse the test.

Thank you, thank you, thank you.

[shirleymahoney]

I never had an EP study i became a candidate because my brother died before the age of 50 with HCM


Shirley

[Reenie]

Reenie:
Thanks for this information...it's very timely for us since the specialists are pushing for Olivia to have an ICD placed ASAP. The hospital wanted her to see an electrophysiologist tomorrow, but since my husband is out of province until the weekend, it has been deferred until June 17. We have been told that appointment is a consultation only, but if they seem to want to do EP testing only to determine her suitability for an ICD, we'll now know to refuse the test.

Thank you, thank you, thank you.

You're quite welcome. I hope that the information helps a lot of you. What risk factors does Olivia have?

Shirley, my husband never had the EP study done either. They implanted his based on massive hypertrophy.

Reenie

[Brownie]

Hi, Reenie:

After Olivia's testing at Sick Kids, the childrens' hospital in Toronto, I knew that the doctors would want to her to have an ICD, but I was just hoping that we would have more time to prepare. We knew going in that her septal measurement was one risk factor (last July it measured 3.3 cm, in January, 3.4cm; then mid-May, at Sick Kids, it was 3.5 cm). The echo report used the word "severe", and indicated that only the posterior wall was free of hypertrophy. We were told by the doctor when we saw him that the holter had captured a brief arrhythmia, but when I spoke to him last week (when he told me Olivia would need the ICD) he talked about "abnormalities" on her holter. Additionally, I watched her blood pressure drop during her stress test (pretty stressful for me too, but in a different way) and she became light headed, at which point they stopped the test. They wouldn't even do her stress test without a doctor in the room watching the monitor.

Our family history has no record of SD, but then, until Olivia we had no family history of HCM. Just the same, three strikes against her is enough for the docs to want an ICD.

We are still praying for and believing for her healing. It wasn't so very long ago we saw our friends' son healed of cancer, and we know that miracles still happen. For now, for our family, our hearts believe what our eyes can't see.

Abby

[Reenie]

I understand. Thanks for sharing her story with us. It's frightening when your kids are involved, way more so than if it were yourself or your husband. I know that. I have 3 kids in whom I watch for signs of HCM every day. It sounds like the ICD would be a good idea. I hope to hear soon that your appt went well and she's on her way.

Reenie

[Brownie]

Hi, Reenie:

You're so right, it is much harder to watch your kids struggle with this. We have four kids, two with a positive diagnosis, (one severely, and one mildly hypertrophied), one classified as "borderline" since they had a really hard time measuring her septum - they couldn't identify for sure where septum stopped and wall began- and one who is currently listed as clear, although his measurement is larger than it should be. They will all be followed up regularly at Sick Kids from this point on, but we are constantly on the watch for symptoms.

The hardest part in all of this is how quickly things have changed for Olivia. Before our visit at Sick Kids she wasn't even on medication. Now I expect that she will have an ICD very soon, in addition to her newly prescribed daily dose of atenolol. She does seem to be handling everything well, but it is an awful lot to deal with at 13.

Her classmates, actually her entire school is wonderfully supportive of her. While we are in Toronto to see the EP, they will all be praying for her. Can't ask for better than that! :D

Abby