In response to your requests this is the news on how my Ablation went. I must stress this is MY experience and is not in anyway considered the norm. I am writing this post having been discharged from Hospital two hours ago after my Cro-Ablation yesterday. So my experience is current.
Arriving at Hospital on Thur. At 7.15am I was shown my bed and given a Hospital gown and some disposable pants. The curtains were drawn.. (all normal so far) Five hours (1.15 pm) later a face appeared and introduced himself as Dr. ...... who would be performing my Ablation. This is where it started going wrong because this was not my EP who I had been seeing privately (at great expense) and who had agreed to do my procedure. This as it became known was a new consultant (3 months in the job) who had only performed between 30/40 Ablations mostly under supervision as a trainee. My nominated EP had done more than 400 over a 5 year period. I was trying to hide my annoyance without showing my disapproval and showing dissent above all I had to show respect.
I asked for some time to gather my thoughts and my first reaction was call it off as I had only reluctantly agreed to the procedure in the first place. However waiting for five hours I decided to proceed.
The Ablation was not a nice experience I had local anaesthetic in both groins and it Hurt a lot. I felt no discomfort in my chest and no pain but where the catheters entered it was mighty sore. They administered a light sedative which helped me doze off. (That's when I missed the fireworks)
I was not aware till today before being discharged,that the Ablation was halted for a period because the Phrenic nerve had been touched and the right nerve partly frozen. It had not corrected itself so I was sent for an X-ray which showed no change. So now I am suffering serious breathlessness (you could nearly feel sorry for me). However that's life I have no right to complain when you sign a disclaimer so make the most of it.
I realise this is long winded but just wanted my fellow AF sufferers to realise that Ablations are not always straight forward, and just one final point when preparing your overnight bag, pack a couple of ear plugs. The final straw for me was the guy who snored like a pig and kept me awake all night.
Ps don't bother posting just send flowers....
Mo
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Maureens46
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On reading this I felt you needed flowers and lots and lots of them.I have not needed an ablation ..T.G. but this sounded pretty awful all round.I feel sure your sense of humour will help enormously.By the way. had your own EP fallen off his bike on his way to do your ablation...or what?
I'm so sorry to read of your problematic and challenging procedure. Hope in the end the ablation has worked it's magic for you.
Mo, I am so sorry to hear this. I was so reluctant to have my first ablation mainly because I had read of all the things which could go wrong. You were very unlucky.
I have been lucky to have all three of my ablations performed by the same very competent experienced EP. If I didn't feel confident about my treatment I would not have agreed to further intervention.
What is happening next with your breathlessness?
Btw...i always stuff bits of tissue in my ears when staying in hospital overnight!
It was not an easy decision to proceed, I suppose with hindsight I should have called it off. Reference the breathing I will get an appointment in two months time with another X-Ray to check if the right Phrenic Nerve has corrected itself. I suspect I shall be making an appointment with my EP in the near future. (Just for reassurance)
So sorry to hear of the awful time you had Mo. I can tell you that this is not typical for an ablation. I've had three, two under sedation and one a general anaesthetic and at no time did I feel any discomfort. With hindsight what a shame you went ahead with the procedure under a new EP, so difficult to make a decision in the situation you found yourself. I think most of us would have made the same one as you.
I always take earplugs to hospital and wear a mask so I'm not affected by lights going on, or machines whirring in the middle of the night.
I can’t express the outrage I feel about how you were treated. I too have had the situation where my EP allowed his team to perform the ablation but to be fair he was there supervising for the majority of the time. This is to be expected as the new doctors must gain real world experience.
I now have a different EP who is wonderful and always in total control.
As you were a private patient I think you should be able to take this matter up with the person who contracted to do the ablation for you.
I really hope it all settles down for you and wish you all the best for a speedy recovery.
I fully agree with Pete. If you go privately you expect the EP you saw to carry it out. Phrenic nerve injury is caused by inexperienced EPs. In hindsight you probably should have called it off, but having waited 5 hours and built yourself up for it, I can fully understand why you went ahead, I might well have done the same in your shoes.
I would complain to the hospital and the EP. You can be respectful but assertive. It's not right that an admin meeting should take priority over patients.
If you are paying the bill yourself rather than through insurance, I would not pay anything until they come back with a suitable solution to put it right. If through insurance, ask them to withhold payment.
Really sorry for your terrible experience. Totally agree with Pete’s reply and I think verifies for me one thing I have learned throughout life - go with your ‘gut’ instinctual reaction.
I may have misled you on the procedure. My Ablation was carried out by the NHS but all my prior appointments were private. Nevertheless my EP did agree to do the Ablation and that's why I'm feeling miffed and let down. Sorry if I got that wrong.
OK, thanks, Mo. That does change my view. Your approach of private consultations and an NHS ablation was a good one, it's just unfortunate it didn't work out.
I still think that you have been treated badly when you are so vulnerable. I know that the vast majority of doctors are dedicated to making their patient better and do their best but I do wish that sometimes they could walk a mile in our shoes.
So sorry to hear of your experience Mo, yes ablation is not pleasant, unfortunately I was awake throughout 90% of my ablation and could hear and feel quite a lot of discomfort while doing my RF ablation but I have to say 3 weeks on it was the best decision I ever made, after having a few stay in hospital before with AF problems I always take ear plugs they are a godsend for a half decent nights sleep
I'm rather sad that this sorry mishap is being blamed on the 'inexperienced' consultant, only 3 months in the job who had done 'only' 30 - 40 ablations. There is no doubt in my mind that we need more 'experienced' consultants capable of doing this work, and how are they to gain that experience? I would expect that after several such operations, somewhat less than 30, they would count as 'experienced' and that the EP in charge had full confidence in their abilities, or else they would not have been permitted to take it on.
Everyone makes mistakes. I know that I have made a few in my professional life, one of which could (at a stretch of the imagination) have resulted in death or serious injury. Some mistakes are easily corrected (mine was immediately after it was detected), but others are difficult or impossible. We don't even know that this can be judged to be a 'mistake'. Every patient is different, and the risk of any medical procedure is always there. It could be that avoiding the nerve in this case was a close judgement call that just went the wrong way. Hence the waiver that we have to sign before a doctor will risk intervention.
I'm so sorry that this has happened to you Maureens46, and I fully understand your feelings about it not being your trusted EP. I'm sure that I would feel the same, and probably make the same decision in the same circumstances. But let's not judge the consultant so harshly. Life is a random function.
Hi Momist, thanks for you comments I suppose I should feel relieved that the rest of the procedure went ok, after all there are those worse off than me medically speaking.
There have been a few posters who have suffered phrenic nerve damage. I can understand your frustration at not receiving what your understanding of who would perform the procedure - and I think that is the point you could take up as there seems to be a lack of transparency and trust somewhere along the line.
Who knows what actually happened - it’s how it is now managed and I do hope you receive all the support, care and attention from here on in.
Thank you Dreamer I appreciate your comments and who knows it could have been worse. Just have to push on and manage my condition and hope I get my breathing back. Thanks again.
I would have left if I didn't have the top man that I had already paid for my consultation. A GP once said to me that if I needed a hip replacement to have it done privately as once you are 'out' you never know what old codger they have brought out of retirement to do it.. or trainee for that matter.
Very good point seasider mabey I should have learned from previous experience when I had my second knee replacement done. Because of the increasing backlog they brought a retired orthopaedic in who made a complete hash of my Op leaving me with a serious limp and pain and stiffness, but that's another story....
Just shows that my old doctor knew what he was talking about. I met a lady with the a similar problem and she got herself referred to the Royal National Orthopaedic Hospital NHS Trust in Stanmore who specialise in sorting out the mess others make. There is another in Birmingham.
That is a frightening experience, sure hope the a fib is gone and breathing improves.
Very bad experience and underlines once again the importance of who does the procedure - totally understandable having been put in that position that you went ahead but there is a warning for those still to have the procedure that if you have researched the EP carefully then if he / she is not available you may be better postponing the statistics are not in favour of the inexperienced.
Have you access to the statistics? I would be interested.
I also think that the best in the world can have an off day and the worst a really good day.
That is a terrible experience. And I'm sorry you had to go through it. The worst part is your EP left you in the lurch in the hands of an unknown 'quantity'. I know you want the whole experience behind you but, if it were me, when I felt well enough I would demand an explanation from your EP in person and not through someone else. And I don't buy the story about an important meeting. IMO, the professional thing to do would have been for him to see you in person asap, explain he had to postpone your surgery as something came up and given you the choice right away and without putting pressure on you to reschedule or take whoever was available. Also 5 hours seems a long time to wait without info or updates of any kind. Do you have any recourse re reporting his behaviour? I'm hoping despite everything you endured your ablation turns out well and the breathlessness and phrenic nerve problem resolve themselves 100%. Take care. xx irina
Thank you Irina for you lovely post. I would have been happy had my EP come to see me personally and explained his absence. Perhaps he could have talked up his replacement. I would have been happy with that but that didn't happen and I'm gutted. I will be looking for an appointment soon with EP, not to point the finger but I want some answers. After all as Bob D would say the purpose of an Ablation is to create a Better QOL in that respect I have been sold short. Many thanks again to Irina and all who have offered their support by posting here. That means so much when you hit a dark place. X
You're very welcome. I feel especially bad for you because my ablation in 2016 was so smooth and easy and done by an Electrophysiologist who I trust. In fact, he helps me with non cardiac problems when other specialists or my PCP don't come through. I think your whole experience began with poor communication on his part. Much of the time, for me, I am happy even if there is a problem, to be treated with respect and spoken to as an equal. I think most of us want this but often don't get it. Take care. xx irina
I’m SO sorry to hear your bad experience, Maureen. You must feel so gutted 😢
I’m glad you let us know - firstly because we care and want to send you our support (and flowers!) and secondly because i learn so much from hearing other people’s experiences.
Really hope that you heal up quickly and also start to feel better really soon. And of course that the dreaded AF will prove to be a thing of the past - so you’ll be glad in the end you went through with it. Huge hugs xxx
Many thanks for your caring post. I felt the need to communicate my experience good or bad.. I just hope I haven't discouraged anyone from having the procedure while at the same time highlighting the risks. Thanks again.x
Oh yes, I think you communicated it really well, and you made clear it was just your personal experience. It wouldn’t put me off having it done -in fact it’s very helpful as it would make me consider in advance what I would do if the same happened.
Btw how do you find out how many ablations an EP has done? Xx
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