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Pacemaker/dICD vs ICD

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Laoshur Find out more about Laoshur
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  • roboknight
    replied
    Re: Pacemaker/dICD vs ICD

    Originally posted by Sarah
    Dear Rhoda,

    I'm with Reenie on making an ICD two procedures. No advantage to it I can see.
    How often do doctors decide on two procedures vs. one? Mine, fortunately, was one and I think that was no small favor. I would hate to have had to go to the hospital twice to get this done.

    Leave a comment:


  • roboknight
    replied
    Re: Pacemaker/dICD vs ICD

    I understand getting off the meds prior to an EP study, but I thought that 48 hours wasn't sufficient enough time for the body to be med free. I don't have HCM but had an EP study in April and they had me off my meds for a week.
    Maybe it depends on the meds. I was only on beta blockers and the doctor said only 24 hrs (don't take meds the day before the exam which made it more like 36 hrs actually). Of course my implant was almost a foregone conclusion before the study I believe, so maybe the results with respect to implantation didn't matter.

    Leave a comment:


  • roboknight
    replied
    Re: Pacemaker/dICD vs ICD

    Rhoda,
    My doctor initially recommended one of these for me too. However, I talked with Lisa here and she told me the same thing. They don't usually do those anymore to make that determination. After I learned that I was concerned that the doctors were going to base their decision on that study. They didn't. When I went to the hospital (Fairfax hospital is very good), the doctor told me I had too strong a case for implantation to NOT do it and they might not do the study at all (depending on how the doctor performing the surgery felt). He did it. That was when they calibrated my device to somewhere over 150 bpm (at least that is what they said. I don't know what the other conditions are). Anyway, Lisa was right. They don't really use this study any more for that purpose. In fact I learned that my original heart doctor mainly prescribed the study indicating that I was probably likely to need one of these devices. It turns out they weren't far wrong because the incidents that happened during my Holter monitor exam showed my heart beating at around 139 bpm. Pretty close to 150 bpm. I am a pretty lucky fellow... at least if you count that I'm still here to tell you all of this. My shoulder still hurts. But the surgery wasn't painful. Dr. Sleepytime put me out for the whole thing and boy am I glad. I didn't want to be there for ANY of that.

    Brandon.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Pacemaker/dICD vs ICD

    Let me take a stab at this....
    No there are not 2 camps per se... there are a list of risk factors and there are some that factors that are viewed as more significant - for example prior cardiac arrest a rather obvious factor and others are not so clear to some.
    Septal thickness of 3.0 or greater is a risk factor that has been id'ed.
    Family history of Sudden Death is a risk factor and history of arrythmia is a factor as well. Adverse Blood pressure responce is the 5th risk factor.

    NOW for the tricky part.. of all those who die from HCM only 50% have identified risk factors...what does this mean...we need to learn more about how to evaluate risk for HCM...

    Did this help... or just add more ???????????

    Lisa

    Leave a comment:


  • Reenie
    replied
    Re: Pacemaker/dICD vs ICD

    Originally posted by Laoshur
    Sarah,What I was asking was whether my understanding was correct that there are two groups of professional opinions - one which says that septal measurements of or over 3 are the only risk factor and another which says that there are other risk factors such as my family history and personal history of fainting which should also be weighed.
    Rhoda, I think the answer to your question is no. I don't know of any doctor who will say that they only look at the septal measurement when deciding whether or not to place an ICD. Most doctors that I know of will prefer that you have 2-3 of the other risk factors when making that decision. The caveat is that there are some doctors who will place an ICD with a septal thickness of 3+ cm regardless of the absence of other factors. Example: when my husband was at the EP debating whether or not to get his ICD, the EP contacted experts all over the world. My husband's only risk factor was a severely thick septum. At the time his measurement was believed to be 5.2cm. That by itself was significant enough for the implant.

    Reenie

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  • vickie
    replied
    Re: Pacemaker/dICD vs ICD

    Rhoda,
    Maybe what you remember about septal thickness is that a measurement of <1.8 usually means you are not a candidate for myectomy or alcohol ablation. You can have an ICD with lesser septal thicknesses. I have one with a septal thickness of 1.6. Also re: beta blockers and calcium channel blockers. My understanding is that this combination is not that unusual. Calcium channel blockers are often added to beta blockade if beta blockers alone are ineffective. I am on both plus Norpace. I do know it is important to not stop beta blockers cold turkey. They are supposed to be weaned. When I had my EP study, my Norpace was withheld (it is an antiarrhythmic) but I don't remember that the Atenolol or Cardizem were.

    Leave a comment:


  • Laoshur
    replied
    Re: Pacemaker/dICD vs ICD

    Sarah,

    I understood that my septal measurement was not a risk factor. What I was asking was whether my understanding was correct that there are two groups of professional opinions - one which says that septal measurements of or over 3 are the only risk factor and another which says that there are other risk factors such as my family history and personal history of fainting which should also be weighed. I understand that most of the people writing here seem to weigh several factors including these, but I also thought I had heard Lisa say that some doctors disagree and weigh only the septal thickness. If this is the case, I would like to see some of the original literature on the subject so I can see why there is such an difference of opinion and hopefully make a better decision myself.

    I guess the reason I am searching here, is that before I came back to the US at the end of April, I had several times when I was not sure I would make it across the street, up the stairs, etc. without fainting as well as the two times I actually fainted. I am not eager to repeat this, but really would prefer not to get an implant if I do not need it. So, which risk factors need to be weighed is personally important to me.

    I hope this clarifies what I am asking and why.

    Rhoda

    Leave a comment:


  • Sarah
    replied
    Re: Pacemaker/dICD vs ICD

    Dear Rhoda,

    Um, "watch out for a severe arrhythmia" is not the same as looking out for a severe cough. Ventricular arrhythmias don't really give you a lot of time to go to the doctor about them.

    Also, beta-blockers are best weaned off of because if you stop cold-turkey you risk withdrawal-like symptoms or a rebound effect (you feel worse).

    I'm with Reenie on making an ICD two procedures. No advantage to it I can see.

    As for the septum, yours isn't a risk factor, even if 1.9 is the reading. You and your doctor need to look at the rest of them (use search function here) to make the call.

    all the best,
    S

    Leave a comment:


  • Reenie
    replied
    Re: Pacemaker/dICD vs ICD

    Originally posted by Laoshur
    The reason for waiting two days to implant if they decide I need it after the EP study was simply that the doc wanted to do it the next day, but the surgical lab was not available for a long enough period.

    I am still somewhat puzzled by the relationship between septal thickening and sudden death. As I understand it there are two camps: One would accept my having fainted twice and my family history of sudden heart failure as factors to be considered in whether I should receive an ICD. The other camp says that since my septum is not very thick, I am not a candidate. Is this correct? Does anyone have a reference to a tech paper on the two views and a comparison of their data? (I am a biologist.)

    Also, the doctor told me to go off the beta and calcium channel blockers 48 hours before the EP study. He offered to have me hospitalized for 24 hours before the procedure, but I said I was not afraid, since as recently as April I was running around all over Beijing without them. He just said to watch for severe arrhythmias and come immediately to the ER if they occurred. Was I stupid?

    Thanks for all your help!

    Rhoda
    I understand getting off the meds prior to an EP study, but I thought that 48 hours wasn't sufficient enough time for the body to be med free. I don't have HCM but had an EP study in April and they had me off my meds for a week.

    The idea about septal thickness and sudden death is not clear. See, you can have fatal arrhythmias without having a severely thick septum. Some people with the thickest hearts have much fewer symptoms than people with thinner hearts. There isn't necessarily a correlation there. And you may not know that you're having a severe arrhythmia. You just can't always feel them.

    As far as having the EP study to begin with, most doctors who are very familiar with HCM will agree that a negative EP study isn't very much an indicator of sudden death for the HCM patient. I don't know the mechanics of it, but the results are skewed from that of an EP study on a regular heart.

    The question raised about an EP study, then waiting for the implantation, is that the EP study is done in an EP lab by an electrophysiologist. An ICD is typically implanted in an EP lab by an electrophysiologist. I don't understand the wait when you'll already be there and will already be sedated. Why risk sedation twice when you're where you need to be anyway?

    Does that help answer some of your questions about why we were asking specifics? We're just concerned that you'll undergo more procedures than are necessary. Make sense? Feel free to ask more or comment more if you don't understand. I wish you the best of luck either way you decide to go.

    Oh, and I haven't re-read the entire thread, but are you on both beta blockers and calcium channel blockers? That's a little unusual. Just curious.

    Reenie

    Leave a comment:


  • Laoshur
    replied
    Re: Pacemaker/dICD vs ICD

    Wow, there were so many questions asked here, that I had to take some time to stand back and think before answering. Let me try to see how many I can cover:

    The reason for waiting two days to implant if they decide I need it after the EP study was simply that the doc wanted to do it the next day, but the surgical lab was not available for a long enough period.

    Yes, since I was diagnosed, my sister has been diagnosed a few weeks ago. We also believe that my daughter has it, but she is in job transition right now, so we are waiting to have her tested. And yes, I told the doc that.

    I did bring all my records, as I was given them, to the doctor. I think that the new law regarding patient access to records may be a problem here. The cardiologist I have been seeing clearly showed me the 1.9 cm thickening, but had to measure it himself as it was not on the record. This was in spite of the fact that the echo technician had clearly showed me the thickening and how it was hitting the valve. So, why did it not show in my records and why did they not say HCM as a diagnosis? I cannot be sure, but when I mentioned this to a friend and former student who is a nurse, she said she was not surprised because many records are vague now because that gets by the fact that patients can ask for their records.

    I am still somewhat puzzled by the relationship between septal thickening and sudden death. As I understand it there are two camps: One would accept my having fainted twice and my family history of sudden heart failure as factors to be considered in whether I should receive an ICD. The other camp says that since my septum is not very thick, I am not a candidate. Is this correct? Does anyone have a reference to a tech paper on the two views and a comparison of their data? (I am a biologist.)

    Also, the doctor told me to go off the beta and calcium channel blockers 48 hours before the EP study. He offered to have me hospitalized for 24 hours before the procedure, but I said I was not afraid, since as recently as April I was running around all over Beijing without them. He just said to watch for severe arrhythmias and come immediately to the ER if they occurred. Was I stupid?

    Thanks for all your help!

    Rhoda

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Pacemaker/dICD vs ICD

    I was a bit tired when I posted my last comment on this topic and wanted to clear up a point.
    In HCM EP tests are viewed to not have a great deal of value...however in other conditions they still have a great deal of value. If the diagnosis of HCM was not 100% clear to a doctor - which sound like may have been the case here...I am not surprised in the suggestion for an EPS.

    Being awake makes a big difference in posting replys

    Lisa

    Leave a comment:


  • kthanki
    replied
    Re: Pacemaker/dICD vs ICD

    One more thing to keep in mind about going to China...
    The first six weeks after the procedure, typically heart is supposed to be in an acute phase. Doesn't mean it is dangerous, but the response varies from person to person.
    You may need frequent check ups and adjustments of your device during this time. Also, the threshold changes during this time to which should be adjusted if the pacer function is on. This is the minimum voltage needed to beat the heart.
    Also, HCM meds affect the AV delay. To ensure they don't go out of hand, pacer is used as a back up which keeps watch, and kicks in if the AV delay is longer than the set no.
    Also, AV delay affects the feeling of how soon or how late you feel out of breath. All these adjustements kind of settledown in the first 6 weeks.
    From my experience, staying close to the home base was very helpful for the first 6weeks.
    And also lifting the hand above your head... I have heard people giving time frame of 2 weeks to 6 weeks. Believe me.. stay closer to 6 weeks.

    Leave a comment:


  • Lisa Salberg
    replied
    Re: Pacemaker/dICD vs ICD

    You bring up a good point. It is very important to have your records with you when seeing a doctor. Docs work off of data not what someone says...but what they can show "proof" of. This sometimes leaves people with a feeling of having to "prove their point" to a new doctor. Having your records in hand at the apppintment will help.
    If memory serves me correctly you have others in the family with HCM, did you explain this to the Dr?

    It is not a simple issue - "to ICD or NOT?" If your diagnosis is not 100% clear - which a septal measurement of 1.4 can leave room for question - it is very hard for a doc to make the call.

    Talk to the doctor more and make sure you are feeling comfortable with the conversation before you make any moves on treatment.

    Be well,
    Lisa

    Leave a comment:


  • Sarah
    replied
    Re: Pacemaker/dICD vs ICD

    Dear Rhoda,

    You can certainly go through with the EPS if you want to, but know why you are having it done and what it will accomplish.

    You should also know that it is not a risk-free procedure and understand why -if you already have 2 sudden death risk factors- you need to prove you have more in order to get an ICD.

    And why would you have to wait another two days; why not implant immediately after the EPS?

    S

    Leave a comment:


  • Reinhard
    replied
    Re: Pacemaker/dICD vs ICD

    Dear Rhoda

    As far as EP study, I'didn't have one done. I had several risk factors like a short episode of v-tach, ( 24h halter ) high septum measurement and the sudden death in the family of my fathers sister ( questionable for HCM ). Also 2 out of the 3 specialists I saw suggested an ICD. No brainer here!!
    I've had an ICD/Pacer since march. My normal heart beat at rest was usualy aroung 60 and I'm not the athletic type. With HCM the doc put me on meds to "relax" the heart muscle which caused bradycardia while I was resting, therefore the doc set my pacer to pace my ticker at 60 bpm when it drops to 60 or below. I recently had it interrogated and it showed that I was being paced 20% of the time, probably when I'm sleeping.

    Reinhard

    Leave a comment:

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