So upset and disappointed

11 days post ablation and being very breathless since the procedure. I spoke to the arrhythmia nurse today explaining my symptoms and after her examining my notes, she seems to think I most likely have phrenic nerve damage.

Although I was told this was a rare complication pre ablation, I never imagined it would ever happen. She said it can take weeks to years to repair itself and if I still have the breathing difficulties at my 3 month check then they will do xrays to confirm.

I'm so upset to think I may have to live like this (any little exertion leaves me gasping) for an indefinite time. I had thought life was bad enough pre ablation, as I lost 2 days each week to AF and very symptomatic. I thought I was doing the right thing by at least trying the ablation but now I'm not so sure.

Has anyone else suffered phrenic nerve damage and if so can you give me some hope?

9 Replies

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  • It's still very early days and there has been no definite diagnosis yet as to the cause. Phrenic damage may be temporary or permanent If it is the cause it should be fairly easy to diagnose with radiology, so it seems like you have to wait and see unless you deteriorate .

  • There have been a few posters with this complication who I hope will post. I must admit I did wonder after you first post of breathlessness but didn't want to worry you.

    I do hope that your worries prove to be groundless and can understand your disappointment and upsetness.

    Cyber hugs x

  • PS - I seem to remember they did heal although it took 6-12 months. Why not do a search on phrenic nerve and PM them? It is always useful to talk to someone who has trodden the path before you.

  • Thanks Dreamer x I will do that. The thought that I can be so debilitated without knowing for how long is very depressing. It now makes sense to me why I was low on oxygen for several hours after the ablation. I was kept in recovery for 6 hours and then on oxygen in the ward for another 4 hours. Also they only did 3 of the 4 veins because they couldn't see the nerve properly. The nurse today said they had done some of the cryo before they decided to abort it. So, although not a confirmed diagnosis, the nurse was pretty sure and now so am I that it is phrenic nerve damage. I'm just hoping it heals quickly.

  • So sorry to hear that you've suffered this complication . I can understand how upsetting this must be.

    I do hope you can get help and heal quickly.

    Regards

    Sandra

  • Just wanted to add my good wishes that you will recover more quickly than you currently fear may be the case. I can imagine how upset you are right now.

    Cyber hugs,

    Carole

  • That really is a downer, when they zoomed through the possible complications I barely listened because I was sure none of it would happen to me so I can imagine the shock when it does. I hope it improves quicker than predicted but even if not try to think long-term. I opted for an operation that I was warned would take 18 months to recover from if I wasn't paralyzed and I thank the surgeon in my heart every day! Sometimes you just have to go for it. I'm sorry it turned out this way for you right now.

  • Hi Surreyhunni,I had ablation 5weeks ago,my phrenic nerve was damaged and procedure was not completed( it was confirmed on ablation day by x-ray and test) feeling much as you do ,but do feel as if there has been improvement since then, stairs are much easier to manage ,also laying down at night has got more comfortable.I have a further x-ray booked for this Friday so will await results from that.Hope this has been of some help to you ,I think it's just a case of time and patience perhaps not what we hoped for but hopefully will be all good in the end. JANE

  • Thank you Jane - your improvement gives me hope that mine could be as quick in recovering. Trying not to feel too down but not being able to do the simplest of tasks or even hold a proper conversation without gasping for breath makes it very difficult. Best wishes for a good continued recovery x

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