Wolff Parkinson White - SVT - Untreatable.

[wpwmum]

Hi! I’m a 31 year old mum with a daughter (14) who has just had her second EP study with ablation. Sadly, this didn’t work.

Her surgeon has said that it’s a complex case with her pathway running from the inside of the heart epicardially - making it virtually impossible to treat using catheter ablation, and at present, there’s nothing else they can do without advances in medical technology.

She’s currently on 2.5mg Bisoprolol twice a day, 125mcg Digoxin twice a day, 8mg Magnesium (1mmol in 1ml oral solution) three times a day. Until she resumes normal activity we won’t know if these drugs are effective or not. They’re discussing using prepafenone or amiodarone if the digoxin doesn’t work effectively to control her regular SVT episodes.

I’ve been doing research on WPW and haven’t come across any information about what happens if ablation doesn’t work and the person has to live with this, potentially, for the rest of their lives.

Right now I’m gutted and heartbroken for my daughter and obviously need to process this information. I was told to join this community by the BHF, in hopes that there’s someone out there that is in a similar position.

[Helen_BHF]

Hi wpwmum and welcome to the community I'm sure other Mums will be able to share their experiences - really hope this helps.

[wpwmum]

Thank you, Serg12.

Unfortunately, Flecainide didn’t work for my young lady. She was still suffering with SVT constantly, just at a lower rate than normal. Propafenone may or may not do the same thing as it belongs to the same group of drugs.

With the bisoprolol and digoxin she is still getting episodes of SVT, some severe and prolonged, so looks like that’ll be changed sooner rather than later.

Did you find yourself getting any SVT episodes on Flecainide?