Possible Pacemaker and Av node ablation

[Jude07]

Hi all, I thought Id maybe give you a wee update. Saw my EP as an urgent review following my 3rd ablation 5 weeks ago. Since that last ablation I had extreme chest pain, breathlessness and extreme tachycardia leading to multiple collapses. Thankful the pain has eased but the rest of symptoms Im still having. After speaking to him he believes the only option now is a pacemaker and then av node ablation, however due to me being 23 he wants to discuss my case with colleagues at mdm meeting to be sure since its such a final step. In the meantime Im getting the heart monitor fitted again and hopefully by mid June they will have made a decision.

Just curious..does this happen much? Have many had this happen? Anyway, just wanted to share as its a bit of a shock and still sinking in.

Jude

[meadfoot]

Hello Jude, so sorry to hear you are having such a dreadful time and at such a young age. I am so much older than you but had all the symptoms as you minus breathlessness which was there but not desperately bad. The tachycardia, chest pain and multiple collapses I had with abundance on and on. I really thought I would never get a life worth living again. Blue lighted into hospital so many times, it was dreadful.

I can see why your EP wants multi disciplinary team meeting given your age. What was the diagnosis you were given, SVT, Afib, Aflutter, or something else.

Question to you, do you trust your EP, are you confident in your team, would a second opinion from another hospital be something you would consider. Given your age I think I would be checking out all options and opinions from the top people in the field of arrhythmias. That way your decision can be made fully informed with opinions from some of the best medics. It may make your decisions easier that way.

I took that route, I went to a top EP in a top centre in the country for further tests and a second opinion, it's the best decision I ever made. Give it some thought.

Do you have family supporting you I do hope so. Your AF family are here on line to support you too. Best wishes and good luck.

[Jude07 in reply to meadfoot]

Hi Meadfoot, thank you for your reply. No matter a persons age having these symptoms is pretty awful and hard for others to understand too.

I was given diagnosis of Atrial Flutter with conversion to A-fib, and main diagnosis of Atrial Tachycardia. My EP actually showed me the mapping images they had created and it showed so clearly that the signals are surrounding the phrenic nerve, svc and the sinus node and in difficult to access areas which explains why its been difficult to deal with despite using different techniques each time.

I do have a lot of faith in my EP, possibly more so after the recent appointment because he said he had spoke to his colleagues before my last ablation for suggestions of techniques as Im quite complicated. The fact that he is going to them again make me feel more positive as I believe he is fighting my cause to get me back to living a normal life. Living in Northern Ireland there arent many EPs, my current one happens to be the second Dr to treat me and I paid privately to see him as I had heard he was one of the best here. It may be worth while looking into the mainland UK in the near future once I get more info...

Yes Ive got great support from my parents and many close family members by me, who just want to see me back on my feet and living as normally as possible. Thank you so much, I really appreciate all the support and advice!

[dedeottie]

I agree totally with meadfoot. You will probably get the same advice from a second opinion but it will make your decision so much easier. Keep in touch on here . We are here to support you. X

[Jude07 in reply to dedeottie]

Thank you very much. I can definitely see the benefits of seeking more opinions; its such a final thing to have done and would make me feel more confident.

[BobD Volunteer]

Meadfoot has said it all really. Big thing at your age and I would not take it without exploring every avenue.

[Jude07 in reply to BobD]

Thank you BobD, its something I might consider doing over the next few weeks if I can!

[Eliza2 in reply to BobD]

Hi bob isn’t the av node ablation done to alleviate symptoms but does not actually stop the atria from fibrillating if that’s a word? The heart continues to be effected? I have heard many positive s from people who went that route but also some that did it and not so happy. I have had two EPS suggest it if I kept having problems in future and then 2Eps say nooooo you don’t want to do that. Of course every case is different and certainly if there is not another option and symptoms are so bad I get that that often is recommended.

[BobD Volunteer in reply to Eliza2]

Basically yes Eliza. Because the pacemaker controls the ventricle and therefore the "heart beat" then symptoms of fatigue should be a thing of the past but yes the atrium can still do it's box of frogs thing without affecting the heart beat. I do know people who have had this procedure and do still feel the AF.

[meadfoot]

Hi again Jude, pleased you are so informed on your current cardiac situation and comfortable with your EP, it's crucial to be confident in the person you are putting your trust in. Great that you have a supportive family and friends who will see you through back to full health.

I have sent you a private message you can access via 'chat' on the bar shown at the top of the page by the Healthunlocked logo.

Good luck.

[Barb1]

Can you get to London? I would think that Dr Richard Schilling would be very interested to see you