A Bit of Info on the World Summit for Brugada Syndrome

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

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16 Comments (+add yours?)

  1. J . G.
    Feb 19, 2017 @ 08:04:25

    My husband has brugada syndrome. He had an ICD implanted. Three months later he had a tachycardia storm. He was appropriately shocked over 240 times in approximately 36 hours. He underwent an emergency ablation procedure to attempt to bring him out of the storm. It worked. For a while. He had several more episodes and approximately a year later had another ablation. With medication and the ablations he has been 10 months without an episode. After the first storm he burned up his 3 month old AICD and had to have another one implated. He also has to keep his potassium and magnesium levels very high to prevent t the PVC’S that cause the LVT.

    Reply

  2. iya
    Oct 24, 2016 @ 01:45:27

    Hi, i’ve been reading your blog and i’m learning a lot. My husband has the same issue and he might need to have an icd. He’s scared and worried about the quality of life living with an icd. He is worried particularly about getting shocked and about driving. Have you been shocked unnecessarily since you got an icd? Do you have driving restrictions as well? I hope you don’t mind answering my questions. I would really appreciate your response. Thank you Alice!

    Reply

    • AliciaB
      Oct 24, 2016 @ 08:39:44

      Hi Alice.I don’t mind the questions at all. I’m here to inform if I can 🙂 I have had my ICD for 3 1/2 years and so far no inappropriate shocks. There aren’t driving restrictions when you have an ICD. However, if your husband should faint or get shocked your driving license is generally suspended for 6 months. That is what I was told. I’m not sure if each state has different regulations but in NJ that is the way it is. My husband doesn’t like me driving our children around because he is afraid I will faint or get shocked. If we go out together as a family, he does the driving. And if he can drive me somewhere, he will. It’s not the law it’s just as a police officer he is uncomfortable with me driving with Brugada.

      Reply

      • Anonymous
        Oct 24, 2016 @ 13:31:58

        Oh! You are so nice and very helpful and inspiring! I really appreciate your reply. You see, my husband is our family’s provider. I don’t work, we have 3 little kids that i’m taking care of. I know you said your husband doesn’t like you driving your kids around. I understand that but do you still drive even with icd? How confident are you to still drive after getting an icd? Should my husband worry about driving after icd?

        Thank you Alice! I am very grateful you made this blog and is willing to help others who has the same health issue.

        iya

      • AliciaB
        Oct 24, 2016 @ 14:39:48

        It’s always best to address all questions to your doctor because they know your individual case. But I personally have no problems driving and there are plenty of people with ICDS that drive back and forth to work without issue. An ICD seems very scary but the alternative is even more scary. Try to look at it as a life insurance policy.At first it is hard to accept but eventually you feel relieved that the ICD is there to save you 🙂

      • Anonymous
        Oct 24, 2016 @ 16:04:30

        Thank you so much! You’re such a kind person! God bless you for helping others having the same issues like us!

        Have a wonderful day!
        🙂

      • AliciaB
        Oct 24, 2016 @ 19:36:42

        Aww, thank you for that. As a devout Catholic I try to genuinely help other people out of the goodness in my heart…pun intended 🙂

  3. mirela
    Oct 11, 2016 @ 04:28:58

    My experience with Brugada Syndrome:

    One of my friends, 34 years old presented a cardiac arrest in 2014. Myocarditis was suspected, but after 6 months cardiac MRI was normal. In 2015 she repeated the cardiac arrest and the ECG showed Brugada type 1. A defibrillator was implanted. A flecainide test confirmed the diagnosis of Brugada and she presented many episodes of ventricular tachycardia/ventricular fibrillation so catheter ablation was proposed.
    The ablation was performed in Italy and after it, Brugada pattern disappeared on ECG.
    This year she presented new episodes of VF, so a new ablation was proposed. It was performed in Italy. After the second ablation, things got better but when stopping quinidine, new episodes of VT/VF emerged and she received an internal electrical shock.
    I think ablation for Brugada Syndrome is a new technique, it works in some patients, but it has to demonstrate its long-time effect.

    Reply

  4. mirela
    Oct 11, 2016 @ 04:19:27

    Alicia you have to be informed. It will clear your frustration. But is up to you to read the latest research on Brugada Syndrome in order to be informed. You are entitled to knowing all the information on catheter ablation but please search it on pubmed:

    – Nademanee catheter ablation of Brugada syndrome – he has an experience of 60 patients ablated.
    -Carlo Pappone and Joseph Brugada they have an experience of 14 patiens ablated.

    The longest follow-up is 3 years after ablation, so don’t ask what happens in 10 years after ablation because we do not know it. Is a new technique, and we do not have enough experience with it.

    Reply

  5. carla di giorgio
    Sep 21, 2016 @ 12:41:14

    Ciao, sono la mamma italiana, un giorno mio figlio sarà operato e toglierà il defibrillatore. ❤

    Reply

  6. Mimi
    Sep 21, 2016 @ 11:48:06

    Very exciting and promising !!!!!

    Sent from my iPhone

    >

    Reply

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