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Wolff Parkinson White Syndrome treatment

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hope79303
hope79303

Over a year ago I was diagnosed with WPW and put on medication which my body did not respond to. Just one year ago I had a catheter ablation done and the doctors said it had been successful. These past couple months I've been having my heart race and I did other 30 day ECG study to find out that the electrical pathway grew back or my heart created another pathway.

I'm curious if anyone else had had this happen and if there was another treatment option other than an ablation or medication that was successful for them?

I'm only 20, so I'm hoping for something that's going to last longer than a year and not be on medication for the rest of my life.

Any advice or input would be appreciated!

0 likes, 2 replies

2 Replies

  • MamaBearFulk
    MamaBearFulk hope79303

    Posted

    Hello!

    I am not sure where you are located, but I live in the United States (Indiana to be exact). My 16 year old daughter was diagnosed with WPW on Nov.1st and will behaving the ablation at the end of December at Peyton Manning Children's Heart Center. Here are a few of the credible websites that were shared with me when I was attempting to learn more about WPW as well as teach grandparents so that they did not Google this disorder and think the worse: 

    https://my.clevelandclinic.org/health/articles/wolff-parkinson-white-syndrome

    https://rarediseases.org/rare-diseases/wolff-parkinson-white-syndrome/

    I know that sometimes they can repeat the ablation but if that is not something you want to do; there are a variety of medications that can be tried. My advice is to just research, research, research so that you are the BEST Advocate for yourself. Myself, I have 5 different medical diagnoses and 4 specialists and have had to learn to speak UP and LOUD about what I WANT for my body and what I will NOT do. Only you know your body because you live in it, so when you receive a diagnosis, you have to learn about that disorder and what is available. Then learn about the procedures and medications and decide what you are willing to do or put inside your body on a daily basis in an effort to be able to live a comfortable and long life. That is what I am doing now for my daughter...being her advocate. I researched all 4 pediatric cardiologist at Peyton Manning before finally choosing the top 2 and that is exactly who she sees and I will not see anyone else or allow anyone else to touch her. The surgeon we chose is the best in the nation. He has done the most successful ablations on youth including the 1st successful ablation on a preemie!

    I wish you the best and I hope that you are able to find the right type of treatment so that you can get your heart into sync and manage your WPW for life smile Prayers!!

  • Chrissy1794
    Chrissy1794 hope79303

    Posted

    I had an ablation surgery done about 9 years ago. I have struggled with what I thought was anxiety on and off for the last year. I’ve seen my doctor on several occasions concerned about my heart rythem. Moral of the story is I finally got a cardiologist to confirm that my WPW is back, so now I’m being referred to another doctor. After my first abaltion I felt 100x better. I’m sorry to hear it didn’t last long. I hope you get the answers you need, the best thing to do is discuss all options with your doctor. That’s my plan! Good luck! 
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