A Bit of Info on the World Summit for Brugada Syndrome

21 Sep 2016 16 Comments

by AliciaB in Daily bread

I’ve mentioned the World Summit on Facebook and Twitter and there seems to be some questions. I to have a ton of questions. Being I am only a layman, with no medical expertise whatsoever, I decided over the last few months to do my own research on right ventricular ablation to help reverse BrS. I didn’t get too far, as I am only a patient. But I have a rough idea of what is going on. I’ll share with you what I gathered, but bear in mind, you should do your own research. I’m in no position to speak as an expert on the WS or ablation or anything. I speak as a patient who has hope in her heart (literally) and I want to share it with my readers. What I’ve gathered is this:

–Only certain patients are eligible for the ablation. You have to have repeated ventricular fibrillation to be a candidate.

–There is still much research to be done to perfect it and assure it is safe. From what I have read there are definite dangers to an ablation.

–It seems most the research is done in Europe, specifically in Italy.

–It is not being spoken of as a cure but rather a way to stop ventricular fibrillation. This confuses me because stopping VF, in turn stops cardiac arrest, right? So wouldn’t that be considered a cure? I’m sure I am wrong…

–When patients with a classic Brugada pattern on their EKG had the ablation done, the EKG reverted back to normal! I have an abnormal EKG 24/7 and have for 15 years. The thought that it can be totally reversed, which may decrease my risk, is HOPEFUL!! But I haven’t had VF so I wouldn’t be a candidate anyhow, I guess. And it seems it reversed the likelihood of VFib or perhaps stopped it all together ?

–Do the patients still have bouts of VF after the ablation? Do they need an ICD still? I don’t know. Being a patient is frustrating because we aren’t entitled to knowing all this info.

Thats about it! It’s not much info but I know enough to have hope for the future and for my kids and for all of us. I just wanted to share 🙂

You can stay informed by visiting http://brugadasyndromeablation.org