Last year around Sep I joined this group desperately seeking answers as to why my Mum was suffering from extreme breathlessness following her 1st Ablation and then PM Implant the next day.
Bob you were the first to respond to my plea. Your words of wisdom, knowledge and reassurance were so welcomed. Someone was listening to my plea.
After the research I undertook from this site I brought up the possibility of Phrenic Nerve Injury to my Mum's Cardiologist. He blew me off immediately. Shut the conversation down so quickly. His response was "the Surgeon went no where near it". His next suggestion was another Cardioversion and back onto Amiodarone. The next visit he suggested Mum had Diastolic Dysfunction. The next visit was the arteries/veins are narrowing. Then we went to another EP for a 2nd opinion. Fresh eyes. He confirmed no chance of Phrenic Nerve and that this was just as good as it was going to get. Gotta love the experts. It's like the Code of Silence. No Dr is going to infer that another Dr. got it wrong. I was beginning to doubt the PNI scenario but I was so sure this is what the problem was.
Then I read again another post from someone who said never give up. Keep asking questions. Then my husband said to me that remember this: Dr's all pass their Dr tests but someone who gets 99% in the test and another who gets 51% pass mark - well they both passed. I had to find me a 99% Dr.
Mum's Cardio suggested a CT Scan and I suggested what the heck - throw in a sniff test whilst we're there. And he did. Just to appease me I think.
Guess what! Last Friday - CONFIRMED - Elevation in the R Diaphragm detected......Pat on the back to me! So we got the diagnosis and we know that now we wait for it to heal. It's been 7 mths now and compared to a mth after the surgery, yes, she's feeling a little better. So it's a waiting game.
Which brings me to my point of this post. I'm in Australia and I'm getting the best free advice from the UK. All the other superstars we visited cost a small fortune for no answers. I cannot thank you all enough for the time and effort that you all put in to this forum. Everyone has a story and no one feels alone when they read others with the same issues. There is such a comfort in that.
To the doyens of the forum, for your selflessness, your genuine care and interest - well I thank you so much.
I only hope that someone searches "Breathlessness" and sees my post and hopefully helps them to put their own story together - maybe it is something as rare as PNI. It all helps.
And to you Bob - I'll never forget you for being the first in answering my plea.
Thank you Thank you Thank you to all you beautiful people for being there. I wish you all the best, happiness, love and laughter. Sorry for the long post too!
Written by
zetagirl
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So pleased you finally got some answers. How difficult is it for a doctor to investigate? Feeling angry that you and your Mum had to go through all of that before getting an answer,
I do hope that eventually your Mum does have a full recovery. Best wishes CD
Feeling smug today! Seriously I am so glad things have been sorted out and such a shame it has taken so long to get an answer. We do occasionally get things right on this wonderful forum and your post makes it all worth while. Thank you.
Thank you for bothering to write - i am definitely inspired by your story of persistence and courage. It’s not easy taking on specialists when they’re so sure you’re wrong. Your mum is lucky to have you.
And I totally agree how lucky we are to have this forum, with the wealth of wisdom shared by our kind and knowledgable volunteers and members
Hope your mum starts feeling properly better soon - love to you both x
Thank you JaneFinn. I respect their profession and their ability. But when it comes to the Q & A, my belief is that we are on equal ground. We are on par with each other so I get to ask whatever I want to ask and expect a response. Nothing is off limits. Love back at you too! x
Well done you for your persistence. It sounds like you researched this for yourself, and then found that surreyhunni here had a PNI following ablation.
Several things are puzzling. Your mum was breathless after the first ablation but the PNI wasn't picked up when she was presumably scanned a matter of days later for the AV node ablation.
Do you think her atrial flutter contributed to her breathlessness? The pity is that her PNI could have been picked up on clinical examination, with confirmation by a simple Chest X-ray. Her own GP could have made the diagnosis.
Thankfully she is improving. How has she responded to the pacemaker and AV node ablation?
Thank you everyone for your kind words. That's just what I love about this forum. So humbling. To respond to you Oyster....interesting that you should ask. I can now see the elevated diaphragm clearly on the XRay that was taken 2 wks after the initial ablation and PM implant. When I said to the EP "Why didn't you pick this up? It's as obvious as the nose on your face the diaphragm is elevated and the lung is at half capacity!" You know he responded by saying that it's not uncommon for the lungs to be uneven like this. I guess he was trying to side step it. Said he'd had 2 previous patients who had PNI and didn't know it. I called that bullshit. I know they are not God, I know there are risks, but knowing what I know now I find it unacceptable that 3 Cardiologists and 1 GP never noticed this, commented on these XRays / Scans. I'm no Dr but it was so obvious. I just wish that I'd picked up on it sooner. I reckon it's that Code of Silence. The fear of being sued I guess. But we got there and now we know.
How has she responded? I guess good. That part all went well. Apparently she's in flutter now 24/7 and the PM is doing it's job. Her Rate Response is set between 60 & 125 but now she does have this underlying concern that one day the PM won't work. But she's a positive groovy gal and just gets on with it.
Sunneyhunni & PZigler for memory I read up. Sunneyhunni has had way to much to deal with that you wonder if there is a god. But you all are so positive and I should say again, just beautiful caring people.
Hello Zetagirl Your Mum is very lucky to have you looking out for her I hope she is not on Amiodarone as it effects your lungs and other organs my husband had acute renal failure was very lucky to get to hospital in time..of course the Dr who put him on it would not admit it was the Amiodarone. You only have to look up Stop Amiodarone to see the results. Going good since it got out of his body (Amio) takes time. Best wishes to you and your Mum.
Thank yo so much MRockwell. That Amiodarone is a drug from the devil. No no no, not on it. Good to hear your hubby is back on the mend. You keep taking good care of each other now. x
Hope your mum gets better soon.I had ablation last July 2017 suffered phrenic nerve damage but was told so by my EP immediately after,well had a few scans in that time the last a couple of weeks ago which showed it has healed itself and I now breathe normally, so that's 7 months ,but I have been told it can take a Year or more.By the way I love Australia have been there about 8 or 9 times have a daughter , grand daughter and great grandson living there.
For my wife, recovery took about 10 months. She knew something was happening when she started getting pins and needles sensations along the bottom of her rib cage. Her EP told her straightaway after the procedure that there had been a problem because they had been monitoring the PN during the cryoablation and an X-ray shortly afterwards confirmed the damage. I am amazed that zetagirl had to be so persistent to find out the truth - obviously there was an attempt to cover-up going on.
Thanks for asking Fastbeat. She's now fully recovered as far as AF issues are concerned (fingers crossed). She was in good hands at Broadgreen, Liverpool. While it would have been better not to have had the PN problem, we don't blame the EP at all - in fact, he stopped the cryoablation as soon as he thought there might be problem. Had he pressed on regardless, the damage would probably have been more serious.
Sounds much like my treatment at Bristol,the ablation was stopped not completed.However what was accomplished has so improved my quality of life that I am happy to leave it at the moment, my EPis in agreement and we will review in a few months.
Great to hear. In my wife's case, the incomplete first ablation meant she continued to have AF problems. She went on to have a second ablation (RF under GA) which did the trick. Hopefully you won't need a second ablation but, based on my wife's experience, it's no big deal to have another one.
Hi tcpace, I've told Mum to hang out for the pins and needles. I read that on the forum and so happy to hear of your wife's recovery. It appears that everyone I've read of with PNI has or is recovering so great news. BTW: Our EP also mentioned this usually happens with cryoablation (and not RF which is what Mum had)
Anyway, peace and love to everyone and if anyone finds themselves on my shores be happy to shout you a drink or 2! Best harbour in the world - Sydney of course!
Brilliant news Fastbeat. Mum's at 7 months now and I have every confidence. Sounds like you have a great EP. Yes, I believe I live in the greatest country and your family is now apart of that. Lucky lucky lucky. Dare I ask where do they live. In Sydney?
Your Daughter has the right idea! In wine country perhaps? Although your granddaughter must be a tough cookie and yes I agree - wouldn't be my favourite place either. Hope she's making some good money. Is she driving the trucks? They love the girls driving the trucks 'cause they look after them. (not like you blokes) My hubby's cousin also drives trucks up Mackay way.
Oops, sincere apologies. Hard to tell these days with our Avatars....Geologist hey! Very impressive. Obviously totally proud with good reason. Lucky to have a super grandmother like you.
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Phrenic nerve damage at ablation.
Phrenic Nerve Damage
Phrenic nerve damage
