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ICD/pacemakers and Neurology follow up w/ MRI

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  • ICD/pacemakers and Neurology follow up w/ MRI

    [ICD/pacemakers and Neurology follow up w/ MRI]

    Author: Cynthia Waldman (---.dsl.lsan03.pacbell.net)

    Date: 01-07-03 16:36

    Hi everyone,

    This is my second post about my recent situation, but I though I might give a little more info. and see if anyone else has anything to say on this subject.

    I have spoken to Lisa twice, and am in the process of collecting second opinions.

    Here is my situation:

    I experienced a near fainting episode right before X-mas. My regular cardiologist and my electrophysiologist are recommending an EP study for me since I have had an episode or 2 of non-sustained V-tach on holter monitoring and since I almost passed out. B/c I know that EP studies are out of vogue for HCM these days, I am seeking more info.

    Dr.#2 today opined that I should just go straight to a pacer/ICD because I am right now maxed out on 25 mg. of Atenolol, and with a pacer, I could increase beta blockers and as a bonus get an ICD.

    My family history is that I have a dad, 71 with HCM, had stroke in late forties, and has off and on A-fib. He has a pacemaker, and takes amiodarone, yada yada yada.

    He had a brother who died suddenly at age 49. Their father died suddenly at 62. I am an only child and my uncles kids all seem ok in their mid to late 30s.

    OK. here's the kicker. I had a benign brain tumor removed in February of this past year following the birth of my now 14 mo. old son. I am now 38. I need to have annual MRIs to monitor my brain stem and as I am sure you all know, pacer/ICDs don't get along with MRI machines, and there is a 5% chance my tumor might grow back and it almost killed me once already.

    Does anyone have similar issues with regard to MRI's? What have you done?

    Any thoughts are greatly appreciated.

    Thanks,

    Cynthia

    P.S. I am seeing one and maybe 2 more HCM experts in the Los Angeles area next week. I was thinking about only 2 second opinions, but after today's doozy, I think I may make the drive down to Dr. Shah in Newport and see what he thinks. I am also going to see Dr. Kevin Shannon at UCLA next week.

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

    [Re: ICD/pacemakers and Neurology follow up w/ MRI]

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

    Date: 01-07-03 18:40

    Dear Cynthia,

    You need a serious risk assessment for sudden death. You should get a stress test to see what your blood pressure does.

    If you have more than 3 risk factors, then you need to consider an ICD.

    That is such a tough call, I just can't tell you how much I feel for you. I have a few medical catch-22s in my life, but d*m, that is rough.

    Since you already have documented vtach, it seems silly to give you an EP. The questions are what is your septal measurement, what is your bp doing during exercise, how much fainting have you done, and how long was the vtach?

    I don't understand what "maxed out" on 25mg of atenolol means. There are a plethora of beta-blockers to choose from, not to mention several other anti-arrhythmia medications like Norpace, Betapace, and Tikosyn. Why are these not under consideration if you need more rate/rhythm control?

    If you take a look at the recent postings, you will find how we feel about pacing --it is rarely indicated. They can put a dual device in and keep the pacer turned off completely though, just in case.

    keep us posted and hang in there,

    S

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

    [Re: ICD/pacemakers and Neurology follow up w/ MRI]

    Author: Cynthia Waldman (---.dsl.lsan03.pacbell.net)

    Date: 01-07-03 18:49

    Thanks for that thoughtful analysis Sarah. To answer your ?s -

    The maxed out on beta blockers means that my heartrate fell into the 30s more than once on a 24 hour holter monitor, and my bp is low. I now even take my meds 1/2 in the am and 1/2 in the pm to keep the bp up. When I take meds all at once, bp is like 85/55.

    I had my blood pressure response to exercise tested in '99. It was fine then, but I agree, maybe it should be retested. As to the v tach, I had one run of 4 beats on the same 24 hour holter monitor. I have had a few beats here and there documented in the past by way of an event monitor.

    Syncope: I have only really fainted 2 times in my life, and that's really for non-HCM reasons....once was a reaction to an antibiotic, and the other was just after delivering my son with my BP being 50/30. My recent episode was a near miss...I didn't actually faint, but it's the first time I really felt like it was caused by my arrythmia which I noticed a few seconds before.

    As to other meds, I asked him, and he said, well, we could try, but the only one he really gives much hope to is amiodorone, and I really really really don't want to take that. I am already hypothyroid, so I am not sure that's a good drug for me.

    One thing that might help is that I am currently hypothyroid, and am in the midst of titrating my meds up. Meanwhile, I still have to figure out what to do here.

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

    [Re: ICD/pacemakers and Neurology follow up w/ MRI]

    Author: Cynthia Waldman (---.dsl.lsan03.pacbell.net)

    Date: 01-07-03 18:53

    Oh yeah, I forgot. My septum has measured between 1.6 and 2.0 in the last few years. It got bigger when I was pregnant, and then went back down to 1.6 at recent echo. My gradient increased from 22 to 61 though.

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

    [Re: ICD/pacemakers and Neurology follow up w/ MRI]

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

    Date: 01-07-03 19:09

    Cynthia,

    You may be able to get the ICD and continue to be screened for the cancer. Have you ever heard of / had a PET scan? It's positron emission tomography. They use nuclear medicine to mark the patient, then scan with antimatter. You can do a search for it on google and get a good overview. As I understand it, there is no magnets involved. My mother is unable to have MRI's because she cannot tolerate the meds used to mark cancer. (She's in remission from lymphoma.) The PET scan has made it possible to scan her whenever necessary. It's a relatively new tool for scans, but is very promising. Please talk to your oncologist about it.

    Reenie

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

    [Re: ICD/pacemakers and Neurology follow up w/ MRI]

    Author: Sarah B. Board Moderator (12.144.99.---)

    Date: 01-08-03 06:13

    Dear Reenie

    HOORAY for technology!

    Dear Cynthia,

    Amio is very strong, but it does help a lot of people. You would not be able to have kids while you were on it and you shouldn't take it for a long time. It has a lot of side effects and if you are sensititve to meds, it may not be right for you.

    As for your risk factors, well --the septum is good, but the rest is a little fuzzy. Definitely gather up those opinions. And look into the PET scan.

    Keep us posted,

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

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