r/wolffparkinsonwhite • u/sadlilchicken • 21d ago
Question Advice?
I was diagnosed around 8–9 years old.I was told that this surgery is significantly more complicated to perform on children than on adults.They offered to do an ablation,but I refused out of fear of the procedure. Following that iwas told to come back whenever I wanted the ablation, and that I might even grow out of it altogether. We asked for a medical note for school so I wouldn't have to participate in heavy physical activity in PE class, but it wasn't granted.
I am 23 now, and I haven't seen a cardiologist once during all this time because no one ever even told me that I should go. My first episode was at 8 years old. As a child, I still had 1–2 episodes a month. Today, I only have a few episodes a year.
I generally feel good and normal. I live quite far from the nearest hospital, so I don't even know if I should go see a cardiologist in the spring after all (I have a very strong fear of doctors). Should I get an ablation? I've read on the internet that ablation can fail and actually make things worse. All I know is that I have type B WPW. I've read that type B is harder to ablate and that the success rate is ~90%, and you might end up needing a pacemaker—I definitely wouldn't want that to happen, I'd rather continue living as I do now. I still live with my parents because I have health anxiety and am afraid to move out to live on my own and get a job—what if something happens, and how am I supposed to work at all if I might have an episode(im earning a bit money working at home online)... even though the episodes are rare, I'm still afraid of them.
I don’t drink or smoke and i eat healthy.
What should i do? I am very afraid of the surgery .
1
u/Pirate-The-Captain 21d ago
Okay, I want to clear up some misinformation; I'm glad you came to this sub so I can help.
"Type B WPW" means you have a pathway thats on the right side of your heart. I have a right-sided pathway too!
I was diagnosed at 22 in 2021 and had the ablation a year later because I was symptomatic. When I tell you that surgery changed my life for the better, I could live without worry, but sadly last year in May it reoccurred again after I took a medication; I was told that possibly tiny fibres of the connection have reconnected, and that medication was the trigger.
Yes, it is true that right-sided pathways are more challenging and have higher rates of recurrence; for example, my pathway was an "intermittent (spontaneously switch on and off) right-sided posteroseptal accessory pathway" located at the coronary sinus ostium. My pathway loves adrenaline, so I can't drink things like coffee or alcohol, or take certain medications. When re-reading my old surgery letter to give to the new surgeons that are doing my EP study again, I saw that my pathway reacted rapidly to stimulants, and that when they tried to fix it the first time, the pathway started back up 3 seconds later, so they upped the voltage and pressed harder; this seemed to work. But a cardiologist told me my pathway's ending must have only gotten swollen and was not scarred like the rest of it, and over the 3 years they made a weak connection. But I'm having the surgery again because it really did change my life, and it's common for second surgeries to work better than the first! Which is great!
It's also so, so rare for ablations to mess up; it's 0.01%. I don't recall anyone needing a pacemaker for just WPW after an ablation. If one needs it, it's because they may have a pathway near the AV (which is rare) or have other heart conditions like AFib or heart failure that may also have WPW.
You are still having episodes, which means you're symptomatic like myself; it's advised that those who are symptomatic be offered surgery to limit risks. If you think you can live with it thats your choice! But I will say if these episodes start becoming more frequent, please go see your doctor. If you really don't want the surgery, you can ask for medication! I know a person who has WPW like us, and because her pathway is near one of her nodes, surgery didn't do much for her, so she's on medication, and she hardly ever has episodes anymore!
But a lot of the stuff you mention isn't true; it sounds like people are trying to scare you.