Morning Campers!On Tuesday 20th August 330pm I have a long awaited appointment (phone of course) with Proff Osman, or team member.
This was meant to occur in April,then early August,so let's hope 3rd time lucky!
Some of you may recall I had a cryo ablation June 2022,after a lengthy 18 month + wait for various reasons ( covid,long lists etc)
Ablation achieved without significant adverse response in blanking period until 3 months on, GP advised stopping flecanide overnight sp I could take painkillers for back.
Result AF almost immediately . Back on meds
Osman prefers us to stay on flecanide until seen by team. Saw him in November .. annoyed and told me to only talk to his team about heart med changes.
To be seen in 6 months,stay on all meds.
It was 9 months, and I had had a further AF single episode,lasting 6 hours or so, during a bad D and V bug. This is what triggered my first identified AF episode.
At last review, to stay on meds,put on RF list for redo in case. Come off flecanide a month before next appointment, GRADUALLY, monitor. If AF,back on straightaway.
So I have done that. 4 days in to reduction by half ,AF kicked in and stayed for hours. So back on.
I had a stressful experience on day 3 ,and my BP sunk like a stone after the AFattack.
Reading like 88/46/50 for 2 days, advised to drink a large glass of water every half an hour. Fine then.
So the point of this longwinded report is this:
There are obviously 2 choices here.
1 Stay on Flecanide as it is now working, whereas pre Ablation it wasn't holding well. 100mg x2 daily. Accept occasional breakthrough in certain circumstances.
2 Go for RFxabkation and try getting off Flec again
Dilemma!
I had such a painful experience of just a short burst of RF to kill off Atrial Flutter that I have been put off by fear. It was so bad! I was wideawake despite being onnmy notes that I wanted sedating.
I was in a lot of pain as I'd only had minimum pain relief,as described on review.
I have said again,sedate and drug me and put on notes. But will it happen again (?)
Any thoughts as to what to discuss further on Tuesday gratefully received!
So,Whittering Wilson returns folks!
Thank you for reading xx
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wilsond
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I'm going to be very assertive if I need to Bob. I would really like to be off flecanide, can't be ideal bring on it for possibly another 29 years.Readying myself, and notebook,for Tuesday.
No ,sadly UHCW do not offer it. I am,if needed,going to make as much volume as I can,make fuss instead of going in quietly and thinking all is prepared! Thank you xx
Tell Prof Osman again about the pain you had and the fear that it's instilled in you regarding having another ablation, then ask for either a lot more sedation or GA. Try to keep your voice sweet and kind and not accusing - you have to be a little crafty to get what you want.
Ooh Jean I like that idea. Kind of Miss Marple,sweet older lady, nervous disposition,needs TLC poor old gal.I can do that...brilliant. I'll post the result.
Yes indeed, like Jean says -- sweet and kind. Tell them how you marvel at all the training they have, such good they're doing for people, etc. etc. Lay it on thick!
I’m sorry you’ve had to go through all that and can see your dilemma. If they do a second ablation, could you ask for GA? I admit, I did think that most, if not all second ablations, if they’re totally RF were GA? So perhaps they will surprise you and tell you that - and you needn’t have worried then…
I remember during my cryo, the sedation had to be turned up as I was feeling every freeze so I can only imagine the feeling you must have had to feel an RF burn 😳
You should not have to feel the 'burns' of RF ablations .All 5 of my ablations were RF, numbers 1, 2 and 4 were under sedation and the remaining 2 were GA. I was well sedated and did not feel undue pain ( and I'm a bit wimpy with pain!)
I know you shouldn’t - but I know that WilsonD unfortunately did, during her last ablation with sedation.
I had cryo only and sedation and my body writhed initially with every freeze until they realised it was painful for me and added more anaesthetic. The hospital I go to only does GA for the RF ablations, so I wondered if this might be the case for hers.
I know they don't offer GA,too overstretched in our area for such luxuries !Hence my nervousness. I shall have the conversation but focus on my experience. I may even think about moving hospital if not. Thank you xx
Oh, that is a shame they don’t offer that - it shows how they all seem to operate very differently. I wish you luck whatever you decide - and I know you’ll make the right choice.
I felt my burns. Not pleasant! I'm quite petite and they couldn't give me any more sedation. I'd go through it again if I had to, but they'd have to warn me.when each zap was coming.
How awful for you. I would be the same if it came to it. I can also do 'bolshy' very well and sometimes have to hold back! For my very first ablation I was told to raise my hand if I felt pain. I raised it quite often and was topped up. ( consequently felt very nauseous and had to have sick 'bowl'🙄)
I have LAAO procedure on Tuesday which I understand is normally done under GA. For whatever reason I'm having this done under local. Nurse assured me that I would be given as much sedation as I needed. However I shall certainly bear in mind your " I'm getting off the table bit" 😬!
Good luck! Will be interested to see how you get on.
Oh best of luck Jalia! Yes I think that got their attention haha. Quite how I'd manage that I'm not sure,hooked up etc!All good wishes to you too. Thank you xx
I was sedated with Fentanyl and the consultant said I might feel "something" when he was on my heart but that they would top me up if necessary. I did feel a very odd, unpleasant feeling at one point and must have grimaced, and I heard him say "more Fentanyl". The next thing I heard was "would you like a cup of tea and a sandwich"!
I’m sorry you had to cope with that, it must have been awful. I remember reading your post. My body was jolting with the first few freezes, I cried out and didn’t have to say anything and they quickly upped the relief which worked thankfully….so I can only imagine what it must have felt like with the burns and no relief.
I would go for the RF ablation but really make a fuss about the amount of pain you experienced and how anxious you are about a repeat.
Q. - was an anaesthetist present to administer the sedation and pain killers?
Sometimes there is not and there are limitations as to how much or mix of drugs a specialised nurse/technician or doctor who is not a qualified anaesthetist can administer.
Lightening does occasionally strike twice more likely to if you stand on high ground in thunder storms.
Be as bolshy as you can be, I had an anaesthetist present who was at the alert to administer GA but managed me hovering between sedation and GA and I experienced absolutely no pain and drifted in and out of consciousness. If the UCHW will not provide anaesthetist, really consider moving to another hospital who will.
That's something I didn't take into account CD. I will certainly take that to the table on Tuesday.
I am well prepared to make a fuss ,definitely. It's not that I'm particularly against a redo/RF ablation if it's the best way forward,just the nagging fear!
I shall be ready to have my say,nicely to whomever rings me.
I'm not far from Leicester Glenfield, Proff Ngs place.
I might enquire as to waiting lists,I've heard fairly lengthy but as I'm generally stable as opposed to when I first got diagnosed, am in a better position to wait anyway.
I don't quite understand, if he can make an appointment to speak to you on the telephone, why can't you go to his office and speak to him face to face?
I can't see the point of it, seems just to generate a larger telephone bill for the NHS, I'm sure most patients would be happy to spend some money to travel to see a doctor face to face. I no longer live in the UK, but all my family do and I was looking at the budget figures. After pensions and other social expenses Heath is the largest expenditure - must be the telephone bill, because from what I gather they are not speeding up actual procedures !
I think it varies from health trust to health trust. I only had telephone consults during the pandemic. I also.had one face to face in December 2020, when my EP had just got the go ahead to see patients with a view to booking them for ablation. I consider i was one of the lucky ones. My local cardiology us Hereford but the EP travels up every 6 weeks from Birmingham
At one of my many ablations under sedation, I walked into the cath lab got on the table thingy and my teeth were chattering so much that my whole body joined the party. (Didn’t try to stop it might even of encouraged it just a little bit) the nurse immediately said oh my goodness you are nervous don’t worry we will sedate you really well and they did, and put a Catheter in as I was convinced I’d want to pee. Down side was when they try to force you to eat afterwards so they can kick you out, I threw up, which incurred an overnight stay. Carnt win them all I guess
I had a similar experience on my second ablation. I had cryo ablation and was sedated and drifted off to sleep, lovely!!! But I woke up at one stage in a lot of pain, felt every little ‘freeze’ so unbeknown to me they stopped the procedure. When I got home I read my discharge letter and it said “as much ablation done as possible as Mrs ———- couldn’t tolerate the pain. Basically the procedure wasn’t completed. So I am extremely nervous of having another one done in case they can’t or won’t do it under GA. I am sincerely hoping I don’t have to go through it again for that exact reason. I hope you can get it sorted out and good luck 😊😊
I was sedated when I had my Ablation for flutter last July didn't remember a thing till I came round in bed , and I am allergic to Lidocaine, hope u get sorted
I felt terrible pain up the back of my neck when I had my ablation in March. My EP doesn't want me to stop taking the Sotalol although I was hoping to come off the drug. No episodes that I know of since but I would be the same as you, scared to go through another ablation, but if I had to I would for QOL
Hi wilsond , as you may remember I had my cryo-ablation done the week after yours by Prof Osman. I certainly encountered some pain, especially when they were freezing but I moaned loudly and the nurses quickly injected more Fentanyl. I'm still on 50mgx2 Flecainide and as I haven't had an episode of AF for over 6 months I hope to start to reduce the dosage after discussion with my cardiologist at Warwick. I had one brief phone conversation with UHCW since June 22 and hopefully won't need to be referred to Prof Osman again
In your situation, I would definitely go for another ablation, rather than staying on Flecainide for ever. I think moaning loudly is the best way to get more pain relief
Ah hello! Yes I do recall you. I am going in with an open mind. I agree,I'd rather get off flecanide altogether really. I will take the tip onboard if RF is offered!
Prescribed no cardioversion, no ablation or anti-arrhyma med (eg Flec). I don't have your delimna. Understand freeze or burn your poor heart (a muscle) is left with scarring which cannot be reversed.
I am sort of lucky because in persistent AF is with me all the time. No pain, no palpatations or flutters but with the 8th cOVID jab 2 days later I had 2 flips on day 3 and 1 flip on day 4. Nt nice for the second. It gave me a shock each time. But the Dr said your undiagnosed UTI but Chemist said COVID jab. ???
Meds for control
CCB Diltiazem 120mg AM control of Heart RATE and also actsas an anti-arrhymic med
BB Bisoprolol 2.5mg PM control of my bP. (systolic was 150-160 / 90
Now Heart Rate Day avge 60s and my low norma Night avg 47bpm
When I had my pacemaker inserted I had a similar experience to you regarding the sedation. They sedated me but I felt everything and it was as though I was being butchered. Therefore when I went for the AV node ablation 6 weeks later I was terrified. I told them this and they looked at my notes and used a different main drug. I literally felt nothing. Hopefully you might have the same experience as I did. Good luck with what ever happens.
Not wittering at all and I hope you had a good outcome today. My 1st ablation was not a good outcome - they told me at best a 40% chance of success - because I was sedated only. I certainly felt it for the first 40 minutes. They upped the sedation and I did go unconscious but apparently was still wriggling I response to the pain. Point of telling you this - you're totally within your rights to insist on a GA after the last experience.fimgera firmly crossed for you. My 2nd ablation not 100% as we'd hoped at first but life is a lot better and I'm off all meds except anticoagulants and only need my Flecainide occasionally. So, I'm really glad I has that 2nd procedure.
Thank you for this. I feel well armed now ready for the phone call! It's on Tuesday 20th.I am very pleased you had a good outcome, that's my dream too ,to be off meds if possible.
Take care Singwell. I will post a little resume of the chat!!
Wishing you a good outcome! Life is more enjoyable for me now, and that's what we all want isn't it? We can't turn the clock back, but we can move forward.
The point has been well made above, that if we complain too much, the procedure may be terminated prematurely.
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2 Year update after cryoablation
Flecanide or Ablation
