EP Study – Update.

Good evening all,

For those who are new please follow the link to get the background info.

https://www.pacemakerclub.com/message/35074.

Right had the dread the EP study carried out few days back and almost made full recovery. Yep it took over three months to make it happened, we love our NHS, lol.

The study was not dissimilar to described by Czechmate, yes my heart was tested to limits, it went off to the races while I was feeling sick and at times felt my chest was squeezed so much that I could not breath. The experience was quite painful and scary at times. At the start of the study I was warned by the EP consultant that Its likely that i would faint during the test and I successfully managed that too, lol.

The study concluded as negative, meaning the consultant couldn’t induce the VT arrythmia during the study and according to him, “did his best” but it was not meant to be hence I am no longer a candidate for a device implant.

Now the dilemma, would this outcome be classed as ‘good news’ or ‘bad news’, I am totally at loss to comprehend. I was convinced/prepared by my cardiologist and the EP consultant that due to my condition and the occurrences of sudden syncope; I would definitely need a device.

The study concluded otherwise and left me in the conundrum, I cant get my head around to ‘What If’, there are no assurances!

Feel free to chime with your thoughts.

3 Comments

A different perspective

by Piggers365 - 2019-07-21 11:01:54

Hi 

if I have read this correct you are at a loose end as to whether you should have an implant or not ? 

I am also in what you call a Grey area. I have HCM. I have never had any symptoms and have played all sports from football to golf for the past 20 years. I can honestly say that to my knowldge I have never suffered any symptoms. 

A few days ago I got an ICD implant. It was my choice and I believe that the doctors would have supported my decision what ever I choose. 

I went for the device simply for peice of mind. I think when it comes to the heart it’s not something to be taking risks with. My Dad had the same condition and didn’t listen to the warning signs, he unfortunately passed at the age of 33. 

After weighing up all the pros and cons it seemed a no brainier for me. And now I have had the device fitted I can say I still feel the same. 

 

I hope hearing from someone in the same boat helps. 

A

Thanks

by mandm - 2019-07-21 19:50:48

You have read this absolutely correct, yes, I am at a loose end as to why the EP consultant concluded that I am no longer a candidate for an implant.

Yes, my condition is not dissimilar to what you described, always been active, running marathons regularly. I only encountered two incidents of syncope, and have not had any other symptom whatsoever.

I guess unlike US, in UK (NHS) we are not given a choice, in fact most of the time decisions are medics driven. I was mentally prepared by the medic team for the device, but the outcome of the EP study has changed their viewpoint!

I must admit, to start with I was reluctant but a meeting with the EP consultant, prior to the procedure, made me realise that its best to have a device for peace of mind. I am not sure what indicators they used to change their mind? The conclusion given to me was that because they could not induce VT arrythmia, they can no longer justify the implant, unsure if that’s an adequate response?

You are spot on that my fear is that I would not want to take any risk, I just feel that I live in a limbo, even when I want to exercise, I need to ensure that I am in a safe and secure environment, how challenging this can be.

I am sorry to hear about your dad, that’s shocking that he passed away at such a young age, must have been very hard for you.  

Yes thanks for the input, it’s a great help to hear from someone in the same boat. 

Following on

by Piggers365 - 2019-07-22 04:43:10

I appreciate the medical boundaries in the UK and US are different but I also was unable to effect my results during several exercise tests. In fact at the age of 18 the cardiologist said it once one of the best he had seen. 

Perhaps try speaking to your doctor once more. Lay out all your concerns and see what their reaction is if you push for the device. I think if my father was still alive they wouldn’t have been so keen to fit one.  

 

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