Who hasn't got an ICD??

[Boz]

I am in a group (maybe I’m its only member) where the stats being shown to me just don’t really matter. However, all Docs at this juncture are suggesting that an AICD would be a good idea.

Not only have I been told that I have HCM and have seen the impressive MRI scans detailing the affected areas of my heart, but I have had the genetic test which has shown exactly which mutation is the source of my disease. Database records show 30 others are on file with exactly the same mutation as the one I’m living with. I believe this isolated group had 5 SCDs – about 16%.

The problem is- these are very skewed statistics. For the most part, only families that have experienced a Sudden Cardiac Death are getting the genetic test. So ANY of the “known” mutations will probably have at least one SCD behind it. It is unfortunate, but the database just isn’t deep enough to be a reliable predictor.

Other than a neutral blood pressure result during stress test (my BP doesn’t actually drop, but it doesn’t go up as it is supposed to), I have none of the other necessary criteria. I’m very active, I’m feeling well – I am just not sold yet.

I am also convinced that having an AICD would absolutely change my life. I’m getting along just fine right now; I don’t need a full time reminder that I could out-of-the-blue just drop over dead. That is a foreign concept to me at the moment, one that I’d rather have kept in the back of my mind.

[Reenie]

My husband has an ICD because his septum is over 3 cm. It has never recorded any odd incidents and it's never given any therapies. He's debating over whether or not to get a new one when the battery wears out. He's had it four and a half years already. I think he'll get the replacement, but he's wondering if it's worth it.

Reenie

[Boz]

Reenie-

I wonder if insurance will pay for a procedure to remove an ICD because you simply don't want it any more. I have thought about this and would not be at all surprised to learn that it is not a covered expense.

Imagine - they spent in the vicinity of $25 - $50,000 to put it in. They can't really argue with the original request. Now you want to take it out??

I see DENIED written all over that one.

[Reenie]

Hm, I never thought about that. He hasn't talked about removing this one, just not replacing it when the battery dies. Honestly, our insurance is different than anyone here. He's retired military and his ICD was implanted while still active duty. I haven't run into anything yet that our insurance won't cover, but I might have to find the right doctor to help with specialty stuff. As long as my PCP writes a referral they haven't ever denied anything for me. They've even said they would cover genetic testing if the PCP wrote the referral.

Reenie

[Lisa Inman]

I have just one risk factor on the list of risks warranting an ICD--3 cm. septum. The local cardiologists wanted me to get an ICD as soon as possible based on this fact. I then went to the Mayo clinic and am just back from a full evaluation there. The specialist there did not recommend an ICD for me. He said that my risk factor of dying of sudden death with just the thick septum as the only risk factor, and accounting for my age also, came to the same percentage of risk that I would have from getting the ICD itself. So in my particular personal situation, the statistical risks were the same and it is a draw. I was glad that it meant no ICD recommended, at least for now. With one risk factor, we will certainly be alert if others are added (like if I start fainting).

Lisa I.

[progers]

Hi guys, hope you are still following this thread. I am like Lisa in that I only have one of the risk factors for SCD: septum around 3 cm. I have had nasty arrhythmias, but so far the two holter tests I've had have not picked up any VT or VF.

The problem is that I have been given different advice on whether or not to get an ICD. Two very well-respected HCM specialists in Australia (Chris Semsarian and Mark Ryan) think I should have one put in immediately. However, my regular cardiologist (who is not an HCM specialist per se) thinks I should wait - at least until holter testing etc. reveals other risk factors.

However, I have just had a myectomy and my surgeon believes that because my gradient and obstruction have been reduced, the risk of SCD has also been reduced. I know that there is no definitive proof that myectomy reduces the risks of SCD, but there are well respected specialists out there who believe it may (e.g. Maron et al.).

Basically, I don't know what to do about an ICD right now. Should I do a stress test to see if my BP drops? What I do know, however, is that I do not want to leave a beautiful 9 month old baby girl without a dad! That's my main concern.

Take care you guys,

Paul

[Toogoofy317]

Hey Paul,

You cited Maron et al, as having done a paper on this. If you could be so kind to post it! Jim and myself have been doing quite a bit of searching for this article to no avail. There was another topic just on this so I think it would remedy alot of arguments.

Mary S.

[Rene' Koenig]

It must be a really tough decision...deciding "to" or "not to" have an ICD implanted.

For me, it just sort of happened. I didn't really have the opportunity to sit and think, and ponder, and stew about everything. Thank goodness!

I'm aware of the list of risk factors. An ICD was never suggested by my regular Cardiologist or by the HCM specialist, so I never gave it much thought, other than reading the posts. Apparently I had no risk factors.

Obviously, things can still happen. I had a cardiac arrest in November and thank goodness was successfully resuscitated! Fortunately, I had just walked into the ER because I wasn't feeling well. When I woke up the next day, I was on a vent and had been lifeflighted to another hospital.

While in the hospital, my Cardiologist said that I needed an ICD and my heart needed to be paced since I'm in heart block. I said okey-dokey!

Honestly, I am not one of the people on the board that have said it was "no big deal" and you can't feel it after a few weeks. Maybe I'm just a big baby! I was miserable and cried for what seemed like forever. And I couldn't sleep. The majority of it was probably depression...the cardiac arrest sort of threw me for a loop! If you would have asked me a month after it was implanted, would I do it again - I would have said absolutely not! For me, it was uncomfortable, and seemed to be poking me it the arm/shoulder all the time. I remember reading "after awhile you can't feel it at all, and you forget it's even there". I remember thinking "Yeh right, they're all just saying that so that people aren't afraid to get them!"

It's now been 4 months, and I would say absolutely! You actually DO forget it's there. I feel so much better than I have in years, now that my heart is paced. And, if something does happen, I know I'll be ok.

Rene'

[Linda]

Rene, I've been thinking about you, wondering how things were. Thanks for the update! Linda

[progers]

Hi Mary,

There are two papers which you and Jim might be interested in. The first is the expert consensus document on HCM by Maron and McKenna (and numerous others) which was written in 2003. I'm sure you are both aware of this paper - I would suggest looking at page 1976:
"Although definitive evidence is lacking, there is some suggestion in retrospective non-randomized studies that surgical relief of outflow obstruction in severely symptomatic patients which may reduce long term mortality and possibly SCD".

The fact that this statement is made in such a comprehensive document co-authored by every major expert on HCM makes gives it strong credibility. Maron et al. cite two recent studies which support this assertion (Mohr et al., 1989; Theodoro et al., 1996).

The second paper is, 'The case for surgery in obstructive hypertrophic cardiomyopathy' by Maron et al. (2004).

I also have a number of papers in my office which address the benefits of myectomy - some of these deal with the issue of SCD.

If you need any of these I will be more than happy to email you guys pdf copies via a PM. These papers are on my computer at work so it may be a couple of days more before I can make it in to my office (as you know I'm recovering from a myectomy!)

Curiously, my regular cardiologist (who is not an HCM expert) does NOT believe myectomy reduces the risk of SCD. However, my surgeon - who knows WAY more than my regular cardiologist about HCM - strongly believes myectomy may reduce the risk of SCD.

Take care,

Paul

[Pam Alexson]

Mary ,

Did you and Jim see the info I relayed in the "ask the Hcma" regarding the thread "Life Expectancy?"

There was a very expert article listed that has world concensus. This topic of SCD has a lot of reference contained, maybe not specific to what you request but very informative( 2003). It is 27 pages long , so get your glasses on if you decide to get into it. I hope it helps.

Pam

[Toogoofy317]

Thanks Pam and Paul,

I do intend getting around to reading it. tough week another four day trip to the hospital. I'm really over it at this point


Mary S.

[richkk]

newly diagnosed and lots of questions

I was diagnosed with HCM the day after Easter. While in the hostpital I had several short episodes of ventricular tachycardia but have had them for years. So how bad does the v-tach have to be to be considered life threatening? How often? I saw the electrophysiologist last week and he said he'd see me in a year. I am on a beta blocker now, walk a mile or more a day and am 48. No family history of sudden deaths. Should I have a second opinion? Do beta blockers always mak you gain weight?

[Reenie]

You do need to get a second opinion. V-tach is one of 5 major risk factors for sudden cardiac death. You probably need to have an ICD. I'm glad you've found us. I hope you can learn a lot here.

Reenie

Major Risk Factors.

• 1. V-tach
  2. history of fainting
  3. poor blood pressure response to stress test
  4. septal measurement of 3 or more cm
  5. family history of sudden cardiac death under age 50

[NoCrash]

richkk,

I don't think it's true that beta-blockers necessarily make you gain weight after starting beta-blockers--in my case it was just continuing the trend from *before* beta-blockers! I do know from personal experience it's possible to control your weight while taking beta-blockers if you control your diet and exercise (or lack thereof)--just like anyone without HCM or beta-blockers.

After re-reading your post, I think I have to agree that a 2nd opinion about the ICD is warranted, particularly if you might have more than one of the risk factors.

Regards,
Rob Thomas