In What Circumstances Should An ICD Be Removed?

My husband and son had their Medtronic ICDs implanted in the fall of 2004. In the meantime, both models had the leads recalled but on the recommendation of their health care providers, they opted not to have them replaced.

Now my husband's ICD battery is running low. His cardiologist tells him that he has to have the unit replaced within a few months. He doesn't want it replaced. He wants it removed, once and for all.

The ICD has never misfired. That's not the problem. It's twofold. First of all, my husband was diagnosed with Brugada Syndrome within a week of our son's diagnosis. While our son's diagnosis was strong based on many factors, my husband's was not. Brugada Syndrome is statistically more likely to strike males between the ages of 25 and 45. My husband is 60. And his VF was not as easily induced as our son's was during the EP study. Finally, I'm reading now that the earlier studies that determined a relationship between EP study results and the likelihood of future cardiac sudden death has been challenged through later studies. So perhaps if this had happened to my family in 2011 rather than 2004, he would not have been implanted with an ICD.

In addition, he just absolutely hates it. He complains constantly about the fact that he cannot sleep through the night because of the ICD. He awakens many mornings with great soreness at the side, because he's a lifelong left-side sleeper and he can't seem to break himself of the habit of rolling over onto that side during the night, only to be awakened by discomfort and fall fitfully back to sleep on his right side.

When he explained this to his cardiologist, he was basically told that he had no choice. The ICD had to be replaced. Period.

I guess I'm not exactly sure what to think. Is it truly that rare to remove the ICD? What happens to the leads if the ICD is removed? It probably doesn't make sense to remove them, since by this time I'm sure they've been embedded into the surrounding tissue by now.