What would you expect?

[wordzo]

Hi Everyone,

Just thought I’d ask here as the help I’ve received on here has been invaluable.

Since my Cardioversion in Jan 2022 I have been in a sinus rhythm. I was originally told prior to the Cardioversion that if 6 months after I’m still in a sinus rhythm. I would be able to come off the edoxaban and bisoprolol. It took 8 months after my Cardioversion to have the appointment with the consultant, however it wasn’t the originally consultant that I had this appointment with and was with one of his registrars. The registrar told me I would have to have an echo to check things and if okay, then he would take me off the meds. I have a history of mitral valve regurgitation, but since the repair when I was 13 I have only ever had a mild leak and nothing changed since now being 35. However once the echo took place it highlighted moderate mitral stenosis, this was a shock as this usually requires intervention. The registrar then arranged for another echo 6 months later. The results have now come back and said everything is okay and no mitral stenosis showing which is good, but the registrar couldn’t give me any details about why it has changed. When I asked if I can now come off the meds because of what the original consultant said. He told me he would have to arrange for an ecg to check if I am no longer in af. I’m confused because the whole reason I am seeing them primarily is because of the persistent af I had. So if I was still in af I would be expecting them to be doing something about it ie maybe another Cardioversion or looking at meds. But I’m not as I monitor it myself. I understand they may want to keep me on the beta blockers to take the pressure off my valve because of my history. But just confused as to why this differs to what original consultant said. Also I had my questions and it was a phone conversation. I felt he was very rushed and not very well explanatory. I’m not a doctor and don’t have a history in this field. So the consultant may feel he doesn’t need to explain everything to me in depth. But still feel I have the right to know. Just obviously all a bit confusing and don’t know if things would be different if I was still seeing the original consultant. I hope someone can help shine some light from their experience and what they expect in terms of being kept an eye on.

Many Thanks

David

[javo123j]

I was still in sinus rhythm 2 years after my cardioversion and was asking the same questions but then this was during the COVID period so appointments became difficult. Unfortunately a few months later my afib started again as paroxysmal so I suppose it proved that doctor was right to be cautious. The cardiologist did warn me that it was likely to come back because of my age ,70, so I hope that you have a much better chance of staying in sinus rhythm.

[Ppiman]

I think many of us feel as you do. I've concluded that the current level of knowledge and ways available to look at the heart just aren't always revealing enough to offer doctors a single clear path forwards, so different doctors will draw different conclusions. It seems to me there's as much art as science in the field of cardiology. The apparent stenosis of your valve, for example, suggests that the echo wasn't clear enough, since stenosis cannot (so far as I know) correct itself. Heart cells, once damaged, stay that way. I was lucky to be given a cardiac MRI, which, I was told is a "gold standard" way of imaging the heart. You might ask about being given one of those given your young age?

Steve

[wordzo in reply to Ppiman]

I’ve never had a cardiac mri. But that does sound brilliant. I’ve just looked and the cost is so high privately and find it unlikely fort consultant to offer me one. Do you think I should at least try asking?

[Ppiman in reply to wordzo]

I think that I would ask since doing so will reinforce your interest and concerns and maybe bring the specialist to find extra ways to reassure you concerning the discrepancies of those prior diagnoses. I hadn't realised the cost of an MRI was getting on for £3k, by the way - phew!

I mean, being diagnosed with aortic stenosis and then being told (what relief, too!) that you haven't, for example. There needs to be a valid explanation of that, I'd say. And there will be, of course. Also, you might be told that such a diagnosis isn't anywhere near as bad as it sounds, and, again, asking, might bring that kind of explanation forward.

Steve

[Teresa156]

I think Steve’s reply is very sensible. What I’ve learnt from seeing different cardiologists is that they all have different views on what’s right and what’s wrong. I’ve been told that scans aren’t always clear and they interpret them how they see fit…I hope you get some answers very soon.

If you can push to it… you could try seeing your original consultant privately, through contacting his secretary - I know you shouldn’t have to, but it might put your mind at rest….consultations are usually around £200 . Your previous consultant could also check your latest scan and compare it with what he saw before.

[SeanJax]

if I was I would keep the same treatment and get another echo since it is very technician dependent. And go from there. Also a month long holter if possible. At 35 you already got persistent Afib and very likely it will come back since it is progressive disease. Take one step at a time. I know nobody wants to take these drugs but do we have a choice? Why not go the ablation route ? Best wishes

[wordzo in reply to SeanJax]

Yes I just can’t see how I am at risk of a stroke if I’m in a sinus rhythm, so do question the Edoxaban. As for the beta blockers I am a fit young healthy athletic person but having these do make me feel tired, hence the reason I would rather be without them. But if they prefer me to be on them as it helps decrease the likelihood of my af coming back, then it’s obviously something I will just have to persevere with. Valve problems are usually a cause for af. But the doctor was unable to say if my mitral history could be or whether it’s just a coincidence. I understand they don’t have the answers for everything as we are all different and our bodies all work differently. In regards to the ablation. This hasn’t been discussed with me. One person mentioned it to me. But not my consultant. Should I seek to discuss this further? I understand it’s not cardiologists that usually deal with this but electrophysiologist.

[Ppiman in reply to wordzo]

My understanding is that an EP is no more than a cardiologist who has trained to carry out catheter ablations for 6-12 months. The EP will work in a team alongside other cardiologists all of whom will be equally as knowledgeable about the workings of the heart, whether "plumbing" or "electrical".

AF is strongly associated with increased risk of a stroke (indeed many people seem to have a stroke before they find out that they have AF - how tragic is that?). I gather that the stroke itself occurs from a displaced micro-thrombus or clot that forms in the top of the heart inside a small irregular sac called the left atrial appendage. It has been shown that the size and shape of this sac predisposes people to developing the thrombi and that it's possible that having this - rather than AF - is what brings the predisposition to strokes:

ncbi.nlm.nih.gov/pmc/articl...

The need for prophylactic anti-coagulation, therefore, might be independent of having AF. Like so many things heart-wise, it seems that medical knowledge is still in the developing stages.

Steve

[wordzo]

Thanks everyone for your responses. I will speak to the secretary to see if possible how would I go about seeing the original consultant. If I can see him then review my past three echo scans.

[mav7 in reply to wordzo]

Hope you able to see consultant at the soonest.

Please keep us posted. Interested to see the doctor's summary of mitral valve stenosis affecting afib.