Brugada diagnosis but no ICD?

[Guy_Smiley]

Hi there.

Following the sudden death of my father aged 67 in his sleep, I was diagnosed via Ajmaline test as having Brugada Syndrome (can't remember the type!) - the wonderful staff at the local hospital have looked after me incredibly well but are suggesting treatment via lifestyle choices rather than an ICD. I also have early repolarisation which is said to be the cause of the permanent ache I suffer in my heart.

I understand totally the balance between risk of operation vs risk of Brugada but I'm really struggling to come to terms with it. Basically I'm taking a risk with something that, if it happens, there is only one outcome. It's enough to stop me sleeping as I fear that I won't wake up.

What are my options? Can I ask for an ICD? Or can I have one fitted privately?

I understand there are risks with an ICD being fitted and that it will change my lifestyle (slightly but not massively) but it's surely the *only* treatment that lowers the overall risk of me suffering the same event as my father. Let's face it, I can't get life insurance now so it's not like the ICD will make that worse.

Is there someone locally to me that I can talk to before I approach my consultant? I'm in Kent.

Hope you can help!

Guy

[Bulver]

What a conundrum! I am amazed that your specialists have recommended 'lifestyle choices' rather than an ICD implant. They don't normally mess around with Brugada, perhaps you should ask for a referral to an electro physiologist for a second opinion. I was fortunate when I was diagnosed, the A&E doctor recognised the syndrome from my ECG, I was referred to the EP immediately and had an implant within two weeks as an emergency.

I sincerely hope that you get this sorted rapidly, best wishes

[Guy_Smiley in reply to Bulver]

Thanks for your reply! Yes - bit of a nightmare.

The lifestyle choice element comes from me being classed as low-risk due to the fact they had to bring on the symptoms with the Ajmaline test but it was very quickly apparent then. But I'm starting to feel it is not a risk I like taking!

The lifestyle choices are simply, no recreational drugs, if I'm becoming dehydrated then I have to go to A&E and get put on saline and I mustn't run a fever for more than 6-hours. Trouble is, my father also showed no symptoms and had none of the above and still passed.

I'm going to take your advice and see if I can speak to my consultant again very soon.

Does anyone know if it's possible (and an option) to go private for an ICD if I cannot get one on the NHS?

Thanks again!

[Kizzie54 in reply to Guy_Smiley]

Hi, yes you can definitely have an ICD fitted privately. You need a letter of referral from either your current cardiologist or your GP. You will then have a consultation and all options can be discussed 😀