Deciding on ICD after Myectomy at Mayo...

[cimdxb2]

I have heard that one is supposed to get an ICD after getting a Myectomy (set for the 23rd). This, of course, if one has a additional risk factors. It appears though, that the number of ICD's getting implanted is definatly growing. Probably because the darn things are getting less and less intrusive.

With that said, I still am not crazy about getting this device put in me. I also understand that it can save my life. I am sure I am in some stage of denial, but just am frustrated by this whole situation.

After some digging, I did find this link...

http://www.sjm.com/procedures/proced...D+Implantation

It seemed to be the best comprehensive piece of info on ICD's.

Has anyone heard of any next generation ICD's coming up? Not that going w/the latest and greatest is the wisest thing, but thought I could at least be informed as to my options.

I am also curious of those that recently got Myectomy's if they also received ICD's. Or from those that didn't. What were the risk factors that were for or against the ICD?

Anyway, any ideas/feedback would be awesome. This whole process is getting to me. But I am glad and feels blessed to be able to be treated.

After meeting Dr. Dearani, I felt much better. Just his confidence alone was comforting.

I will post more I am sure.....

Dave

[Cynaburst]

Re: Deciding on ICD after Myectomy at Mayo...

I had a myectomy at Mayo done by Dr. Dearani on August 11. I already had an ICD before arriving at Mayo, but I believe that just because you are having a myectomy doesn't automatically mean that you need an ICD. That determination depends on how many risk factors you have.

I personally had a history of sudden death in my family, multiple episodes of documented non-sustained v-tach, syncope and pre-syncope, and although noone really ever knew it until my myectomy, a pretty thick septum (2.8 cm.).

I never discussed my ICD with anyone at Mayo since I already had it. However, if you don't have any of the above, or an abnormal BP response during exercise, I don't see why the myectomy alone would have them putting in an ICD.

Who is your Mayo cardiologist? Did you discuss with him or her?

BTW, you are in great hands with Dr. Dearani. He is amazing. I am so happy that he did my surgery. I am feeling so much better now.

[THW]

Re: Deciding on ICD after Myectomy at Mayo...

Dave,
I agree with Cynthia. Having a myectomy is not a guarentee that you will walk away with an ICD also. I don't remember what the percentage is, but someone here on the board may chime in with that info.

I had a myectomy this past January and I DID end up needing to have an ICD implanted about a week later because I experienced heartblock after my myectomy, while still in ICU. (But that was ME, certainly, not everyone does!) The external pacemaker was kept in me, and I was kept in the hospital until the ICD was implanted. The EP doc, my cardiologist, and I all felt that since a pacemaker was needed due to my heartblock, that with my family history, it was wise to go with the defibrillator part also, thus the ICD and not just the pacemaker.

I reiterate what Cynthia said again; Call and talk about this with your cardiologist at Mayo. He/she can discuss with you the likelihood of needing an ICD and any risks involved with the surgery. (I would share that info with you, but I really don't remember. I do remember the surgical risks, percentage-wise, being low.)

I know it is a scarey thing to think about; I remember, and it is good you're trying to learn about it now, prior to your surgery. You may also want to give Lisa a call. After my myectomy when the need arose for my ICD implant, a friend contacted her on my behalf, and she called me in the hospital. It was a relief to hear her wisdom and gentle reassurance.

Take care,
Theresa

[eatwell]

Re: Deciding on ICD after Myectomy at Mayo...

Dave, I am one of those cases that did NOT receive an ICD after my myectomy. It is indeed not a standard course of treatment as the other gals explained. I see Dr. Lever at Cleveland and the discussion regarding an ICD certainly took place. We have agreed that an ICD is not needed for me at this time and these are some of the reasons.
1. I had a relatively thin (yet abnormal) septum prior to myectomy (obviously thinner now).
2. I have never had Afib, V. tach, etc before or after surgery.

Now, having said that, I indeed have sudden death in my family. My father died suddenly at age 60. He had a rather thick septum (yet little obstruction and never had a myectomy. He also had many episodes of A fib and did not receive appropriate treatment (partly his own fault, he was neglectful and denied the severity of his condition). He definitely needed an ICD, but one can't go back.

So, Dr. Lever follows me and I feel ok NOT having an ICD at this time.

My 2 cents, good luck in your physician discussions.
Laura

[Ken Brennan]

Re: Deciding on ICD after Myectomy at Mayo...

Dave,
I had a myectomy on May 10 2006, on May 13th, I was told that I needed an ICD because I was having heart block issues, 4 to be exact. I remember only 1 when my HR went down below 50 bmp. Not being a heart surgeon myself, I agreed to the procedure. Shortly after my recovery, I asked myself? Wasn't the myectomy to take care of all my issues? Where did this Heart block come from? Wouldn't it be 'normal' for the heart to act weird after being stopped, cut into, a piece taken out, then restarted? Sometimes I feel like I took my car in for an adjustment and wound up with a major overhall. Like I said, I'm no surgeon, but I don't think a myectomy is not a pre-req for another procedure. On another note, I'm going back on the table this week to have a 'pocket revision'. Somehow this ICD is causing an awful amount of pain in my chest, it feels as though the pocket is just not big enough, and I've been dealing with this pain for quite some time. Hopefully they can find out what is causing the pain. If not? Then what?
Ken

[THW]

Re: Deciding on ICD after Myectomy at Mayo...

Ken,
Just a note...At the time, part of me also felt like my heart would be ok if we just allowed it more time to heal. And when I questioned the docs about this, (That was the trying to talk-them-out-of-it part of me. -- "What!? What do you mean!? That's not what I came for!....No, let's just wait and see...."), they informed me that unfortunately, once we experience heartblock, we're more likely to experience it again. I found out they were correct when I went for an ICD interrogation. ...And to think that I didn't even know it was doing anything in there but sitting around, invading my body and causing another scar!
Sorry to hear you're still having pain; let us know how the procedure goes.
Theresa

[cimdxb2]

Re: Deciding on ICD after Myectomy at Mayo...

I find this whole thread consistent w/my thinking. What is ironic about this decision is the gray area that is consistent w/HCM. So yet again we are in subjectivity land. I do feel for these doctors that have to treat this condition. Every case being different and all.

I have passed out twice in my life. Once at a softball game (of which that time my doctor theorized was due to blockage) and once at a stress test (w/the leads on my chest showing no A-Fib). Blood pressure did drop under excursion, but wouldn't that be the case when blockage is there?

They told me another risk is my relatively young age of 38.

My father died of a heart attack at 49, but the autopsy clearly showed horrible vein blockage.

I just want to make the correct decision given all the facts. I really wish there was more data out there (I bet the docs feel that way too!)

I go up to Mayo on Sunday morning and really want to have this clear in my head before they cut me open. Guess nothing is clear in this HCM world :/

Thanks for all of your input. W/O this forum I would truly feel in the dark. How small the world becomes once you can find people that even understand what we all have.

On a positive note, they screened everyone in my kids school (via an EKG), looking for heart abnormalities. Guess the word is getting out!

Dave

[scottonbike]

Re: Deciding on ICD after Myectomy at Mayo...

Dave,

I had my myectomy in January of 06. I did not want to have an ICD implanted in me but I knew going in that it would be a possibility. The surgeon at Cleveland said he would make that decision when he was doing the surgery. He said that I would have a 50-50 chance of needing one.

I ended up not needing to have one. I have since come to the conclusion that if he implanted it I would have been ok with it. I think that comes under the "better safe then sorry" rule.

Way to go on the decision to have a myectomy. I am a little bit older then you are and it has changed my life.

Scott

[Spalding]

Re: Deciding on ICD after Myectomy at Mayo...

My uncle had a myectomy without an ICD and has been fine for quite a few years now.

[anarad]

Re: Deciding on ICD after Myectomy at Mayo...

It's great that your school is starting to screen kids. However, an EKG won't necessarily show if someone has HCM. It will show any abnormal rhythms. An echocardiogram is the most definitive way of showing any heart muscle thickening and/or pumping issues.

Good Luck