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April 7, 2008, 11:28 am
Flag as Inappropriate Kathy22  

Does anyone have this condition or know someone who has it? My son was diagnosed with WPW over a year ago. He underwent a catheter ablation that not only didn't work, he almost had to have a pacemaker put in at 14 years old. After that, given the severity of his WPW, the surgeon said it would be a fifty-fifty shot at fixing it and a fifty-fifty shot at ending up with a pacemaker. He chose not to do the procedure again and I couldn't force it on him with those odds. Now he's on medication that he'll have to take the rest of his life if he doesn't end up having another ablation later. There is a chance of sudden death with this syndrome and frankly, it scares me to death. I would like to hear from others living with this condition.

My grandmother had WPW and passed away from it, about a year and a half before the ablation became available. At that time there was no meds available for it either. I'm sorry to hear the ablation didn't work for your son. My oldest has CHDs too, and we've been very lucky with her so far. The thing I keep telling myself is every year brings so many advances in cardiology. My daughter had a repair done in the cath lab that just a few years earlier would have been open-heart. So while it is scary, to have to live with WPW, let's hope that advances are made in the repair soon. :)

There has been meds for it for a long time because all they do is slow and regulate the heart rate to hopefully prevent it from entering atrial fibrillation. The meds don't actually do anything to the cause of WPW. His ablation didn't work (and was in fact dangerous) because he has the worst possible scenario for where the extra tissue filaments are, which is right on top of his "electrical box". That's why it almost resulted in his having a pacemaker.

That's right, Tammy. You must have some medical training because I've never seen it explained so well. Are you a nurse? Most people don't even know what I'm talking about when I say WPW so I just say heart condition usually.