I have I’m sure asked this question before, but I have received a letter from Harefield hospital to go in for this Radiofrequency complex left sided atrial fibrillation tachycardia operation (think that is the wording) on 15th July.
I am really worried as not only the 14 pages of risks, including heart attack mortality within 30 days of leaving hospital, strokes, DVTs, brain problems, etc, I really don’t know what to do as at the moment the beast has been behaving since April (touch wood)
I have also dilated left atrium, a hole in my heart which is thought to have been caused from last ablation in 2018, leaking mitral and transcuspid valves, diastolic disfunction, pulmonary hypertension. Can’t remember what else at the moment!
I still have to have the pre op assessment
Obviously I’m not asking what to do like cancelling or going ahead, but wondered if anyone here has had similar and how it went
thankyou
Pat x
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Tapanac
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Firstly you must know that they tell you all the things that might go wrong so you can't sue them not because they might happen. I have had three RF ablations for AF and one for pure atrial tachycardia at RBHT in Chelsea (part of the same hospital group) and still telling the tales.
You must also understand that AF is a progressive condition so just because it has been quite for a few weeks means not a lot. Obviously you need to be happy with whatever choice you make but please don't let fear influence you.
thank you Bob. I was hoping you would reply and yes I am scared. More than I was with the brain tumour surgery snd that was touch snd go. I’m so glad you are ok
Pat
Ps…did you also have the things wrong with your heart etc like I do
What is RBHT?
I am a worry pots aren’t I No wonder my husband has developed mild dementia with me always going on…..
RBHT is Royal Brompton and Harefield Hospital Trust.
Everybody has some valve leakage as we age. Left atrium dilation often a result of uncontrolled AF. . Got plenty of things wrong myself including a pacemaker these days.
Given what you detailed, including a leaky mitral valve, I would want to know what chance of success they are giving you for a successful catheter ablation. If the chance is diminished, then ask about alternate approaches, which could be either medical (if you continue to do ok as you say), or surgical with mini maze or hybrid/convergent. Two procedures at least a couple of our members have had where catheter ablation wasn't given a very good chance of success.
As to the risks of catheter ablation, they are not to be minimized, however all procedures carry risk and the disclaimer sheet can often be scary even for a very minor procedure Like with any other decision, those risks have to be weighed against the potential rewards, that's why getting a true assessment of your outcome is important.
Thank you Jim. I thought a mini maze was a private operation and we could never afford that. Also I'm guessing (?) that I might be a bit old as I'm now 79. When I have the pre op assessment I will definitely go into the pros and cons. So far apart from the EP I have at our local hospital who has referred me to Harefield, I haven't really had a deep discussion with anyone and what "discussions" I have had, have been on the telephone. Impossible to get face to face appointments these days.
Now I've heard on the news that the doctors are striking again (and I believe the nurse at some point) from 13th - 18th July so my operation on the 15th could well be cancelled
Wow. Sorry about that strike. Something I'm sure you don't need on top of everything else. Not saying you need a surgical ablation, but no sense making a final decision on catheter ablation without first having a frank discussion with the ep on the odds that it will be successful.
I believe "4Chickens" one of our members, just had a hybrid procedure under NHS, so maybe you can find one of her posts or contact her. Also "MummyLuv" is a great source of information on MiniMaze.
Let's hope both the strike gets settled and you get a "deeper" talk with your ep. The more you know, the better decision you can make.
thank you. I know mummyluv had to pay privately which I know we couldn’t do. Is hybrid procedure the same as mini maze?
I’m not sure if I could start all those tests and delays again as I have a mystery pain in my groin/stomach (which I thought was a hernia although medics not sure) but in the meantime I have spinal cordus equina which makes certain parts of me numb and my feet and legs feel spongy and go numb so lose balance if I try to move. Hey ho what it is to be getting old especially when I see some of my lovely friends older than me like spring chickens or better said gazelles!
Yes, she paid privately, but I think the same doc may also do it through NHS, not sure. I do believe "4 Chickens" had it through the NHS, but not exactly the same. Hybrid is really two procedures a surgical ablation followed by a catheter ablation. Yeah, getting old is not for the faint hearted as they say Hope things work out.
Tapanac I'm not promoting the mini maze but just so you are aware I'm down for this proceedure on the NHS. However its not available in all hospitals as its very specialised and not many surgeons are trained up currently in the UK to carry it out but it is available on the NHS. .You really need the options with their pros and cons laid out for you on the table so to speak and a frank discussion. The pre op assessment team won't be able to do this. They just assess whether you are fit for the operation you are down for. Only specialist cardiologist EPs can assess your options
I would definately contact you EPs secretary and explain you would like to discuss this op you are down for as you are worried.
Hi, that sounds very complicated! I can’t help with your question as I have only had a ‘normal’ though very thorough RF ablation for fast AF and Flutter and looking carefully at the description I think it might be a fancy way of saying the same thing. My ablation was fully successful for two years but slowly AF crept back. Generally AF doesn’t bother me too much because it is usually much slower than it used to be and usually comes on when I have an infection or been overdoing things. I’m 78 and have a leaky valve and spinal problems and a bowel issue and I have no intention of having another ablation even if offered partly because I’m not convinced it would be successful. But I am not in your shoes and I do think it would be be good to have an assessment of the likelihood of long term success and then you can decide whether you think it’s worth it considering your circumstances. I wouldn’t have thought one of the more invasive ablations would be offered to you but I may be completely wrong so there again, worth asking. Best wishes ❤️🩹
As Bob says, they have to present you with the worst case scenario for legal reasons but on the balance of probability, and based on the pre op and other information about your current state of health, it wouldn’t be offered if it was too great a risk. Left atrial enlargement can improve after successful treatment for AF and although I’m no expert it could improve the function of your heart as AF is both a cause and a consequence of those changes.
Please ring the BHF helpline nurses and if you have an arrhythmia nurse you could ring her too. You could talk over your concerns and they’d also be helpful in explaining all the terminology of your test results too. The more professional advice you can get, the better.
I had radiofrequency ablations years ago for Atrial Tachycardia, I had it done 3 times over a period of years. They have to tell you all the risks involved, like in any procedure/operation.
I had mine done in what they call a laboratory setting where I could see everything on a monitor that’s being done. They spoke to me throughout checking I was comfortable. I had my first in 2004 then 2009 and 2010 I had my last one. In 2010 it was completely different and better everyone introduced themselves to me and what their job involved. I had someone beside me right through checking on me. Because I had more than one focal tachycardias I ended up having a device fitted and AVnode ablation in 2012
Each time I would be issued pages of possible risks associated with the procedures. Speak to your cardiologist regarding your fears. All the best if you decide to go ahead.
thank you. Apparently I am to have general anaesthetic although at the moment I don’t know I’d I’ll get in there as sitting with my husband in hospital where he was taken by ambulance and keeping him In and looks like a pacemaker
Hi You had an AV node ablation i see sone years ago.I read you will still get AF but wont feel it and are more likely to go into persistent AF as meds are stopped except anticoagulants.How are you feeling? Ive been offered AV node ablation.Sorry to interrupt the conversation but I cant find much info on AV node ablation
I am in persistent AF they reckon, but I don’t feel it. They asked me if I get symptoms and I had to tell them I don’t feel anything. Sometimes I get a fast beat like when I had SVT, but breathing or massaging my neck stops it. I wouldn’t know what AF feels like. I’m getting VTs but I’m not sure if that’s the fast beats. Sometimes I feel dizzy when I’m standing.
They would usually fit a device first then they would arrange the ablation. It was the same as other ablations I guess. Things have changed a lot. My first ablation was different from my 3rd. The AVnode one was much quicker and straight forward, because the others they had to avoid getting near the AVnode and accidentally ablating it, if that makes sense. I haven’t had an ablation since.
I only had AF show up in my device a couple years ago so my meds are the same as before I was put on 10mg bisoprolol when I had CRT-D fitted, because I was have erratic heartbeats. My other meds are heart failure cocktail meds
Excuse me, can you tell me why you had to go 3 times for ablation of Atrial tachyardia? Couldn't they have detected the saristo right away the first time during the ablation? Why and what type of pacemaker did you get? As far as I know, a pacemaker is not implanted for atrial tachycardia? I had ablation due to atrial tachycardia, I had three heart attacks. I only had ablation once. Do you know the difference between atrial tachycardia and atrial fibrillation?
It was years ago at first they thought it was SVT(supra ventricular tachycardia) they ablated. Then a few years later it started again. A year after that ablation it started again, and by then they said they noticed it was stopping my heart from working, it was atrial tachycardia, every time they ablate it would spring up somewhere else, and it was coming out of my AVnode. so I had a pace and ablate. I still get them. Now I’m getting a lot of non sustained ventricular tachycardias so I’ve got apt to see EP in 3 months
I hope I'm not boring, but I'm interested. Have these tachycardias been proven with a holter? Did you have that device (pacemaker) installed because your heart stops? How do you feel when you have VT now? What therapy are you taking? I have rhythm disturbances every day, shortness of breath at that moment, but the holter only shows SVES and VES (extra beats) and nothing more. I drank bisoprolol 2.5 mg and it doesn't help. The doctors are not interested, they say it doesn't make you die. .My ultra sound of the heart is fine. Like a little pulmonary pressure 35, but it's like nothing. The mitral valve has a little leak +1 but like that it's nothing. I'm thinking of looking for a magnetic resonance of the heart. Can you give me some advice.
Excuse me, can you tell me why you had to go 3 times for ablation of Atrial tachyardia? Couldn't they have detected the saristo right away the first time during the ablation? Why and what type of pacemaker did you get? As far as I know, a pacemaker is not implanted for atrial tachycardia? I had ablation due to atrial tachycardia, I had three heart attacks. I only had ablation once. Do you know the difference between atrial tachycardia and atrial fibrillation?
I had arrhythmias (electrical faults) in my heart which would make my heart beat excessively. Once they started they sometimes would stop for a few seconds then start again.
I had a cardiac resynchronization therapy device short name CRT-P the P stands for pacemaker, fitted because of heart failure. It as 3 leeds. I also have dilated cardiomyopathy which eventually can put you into heart failure, which is also the cause of my heart not functioning and the arrhythmias, so I depend on a pacemaker. I was upgraded to a CRT-D the D is a defibrillator, 5 years ago because my heart function was very low and I was spoken to about transplant.
By the way did I miss type the word saristo? because I don’t know what that is.
Sorry. Saristo (my mistake in writing.I wanted to say focus in the heart. I hope you will get better. Do you have a slightly elevated pulmonary pressure, it is measured on the heart ultrasound
What is your pulmonary pressure - mmHG? My blood pressure was measured at 35 mmHG on the ultrasound of the heart. The doctors told me that it is not serious. I have had this number for 4 years. on an ultrasound of the heart?
In January I had echocardiogram and I received a report after a clinic visit. MR vena contracta 0.35 cm. Severe pulmonary hypertension sPAP 60mmHg. They never discussed that part of the echo with me
My mother has 55 mm HG pulmonary pressure, but it is not that terrible. She lives normally. Is your pulmonary hypertension a consequence of heart problems or vice versa?
Did you have the heart enzyme NT pro-BNP done? If so, what are your values? Is he an indicator of the state of your heart? Mine is 245, slightly raised. I think I've had it for several years. Have you gotten over Corona?
It is an enzyme that repairs the heart. Yours was elevated then. Can't you go for some heart surgery to relieve your cardiomyopathy? I read that there are some heart surgeries. Can't the real cause of your cardiomyopathy be discovered? You only went for ablations .
No I’m terminal only heart transplant for me and I’ve refused that now. Whenever my heart completely fails that’s it. I’ve accepted that. I’ve had a heart condition since I was a child I’m now 62yrs old, so I thank God for those years. When my time comes I’m ready.
So why wouldn't you go for a heart transplant? I believe that the transplant would work for you. Nowadays, transplants are successful. Since when did you have heart problems since childhood? How old were you when you started having heart problems?
Only you, your cardiologist and your family members can make this decision. However, l tell you, if l was confronted with this same issue, no way would l have that procedure. I have refused an ablation … l have refused several other things that they wanted to do to me. The one and only procedure that l allowed was a cardio version. I would rather afib visiting me every three months or so … run over to emergency room … converted in one hour and back home l go. It is an inconvenience but oh well. I hope that you make the correct decision FOR YOU … it is your body, no one else’s body … l wish you the best … l will say a little prayer for you. Jan Maree
thank you. It looks like I will have to postpone it because my husband was taken into hospital last night and we can’t both be out of action for weeks on end. More time to think unfortunately.
not good. Ok on the medical side is still wired up waiting for his MRI and then whatever they are going to do after seeing the scan, but he has mild dementia and already phoned me twice asking where I am and why aren’t I with him, why have they got him wired up and can’t get out of bed, etc. upset.
They are kind enough to loan him their phone each time he asks…..
I know once he is back home he will (hopefully) be better but it’s so hard to hear him like that
The nurse said she would let me know what is happening after doctors have done their round, but I need to be there listening, but because cardiac ward rules say only visiting time snd won’t let me stay quietly with him I can’t go
Thank you for asking but I feel unhappy that I can’t be with him
That’s not good for him or you. Speak to them when you visit him concerning all your worries. You are his voice and you need to speak up for him, plus him becoming so anxious isn’t good for either of you. I hope they listen. I’m so sorry to hear you’re going through all this. Let us know how you get on after you’ve visited him, if or when you can. You will both be in my thoughts and prayers.
thank you. I have to take my Bp most mornings for going into Harefield next week and yesterday and today it’s sky high. Trouble is I can’t take more bisoprolol as my heart rate is low
Think I might have to phone GP as well as everything else to do
I think you should visit your Gp, having a high blood pressure is dangerous. Let us know how you get on. I really do feel for you. Hopefully the hospital will be more compassionate towards you both when you visit. Keep in touch.
you are a complex case with a lot of risks factors. I would opt for pace and ablate, which has much and much less risks. I am US based and we consider this option the nuclear one. And in your case the remaining issue is the hole in your heart, the pulmonary hypertension and diastolic dysfunction and the gravity of the valves leak. Keep your strength to deal with these issues. Don’t know what to say more. Best wishes.
Thank you. My husband was taken into hospital last night and I believe they are going to pace and ablate him. Listening to what the medics told him I was wondering if that would be better for me. However I can't be having the two of us out of action for that long, so I THINK I will have to postpone my procedure until he is a little better and adjusted to his procedure. Our family live so far away and although they desperately want to help, it really isn't possible for them with their own families and work issues.
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