I’ve just got off a call to my private EP and he’s suggested I go for a cryo ablation procedure at st bartholemews hospital in London. Has anyone been here and if so can you recommend one of their EPs?
He also said due to my age (34) that it would highly likely that it would be SVT that’s causing my symptoms rather than AF but this could be tested prior too surgery and would obviously affect which operation I have on the same day. I’ve seen this mentioned on the forum a few times so if anyone has any info on it and also experience of both the condition and surgery, that would be ideal.
Thanks guys
Also he has suggested for the time being that I switch too sotalol. Not sure I’m spelling that correctly. Does anyone have any experience of this drug as well?
Thanks again
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Elli86
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He is very well regarded nationally and internationally . If i had gone ahead with ablation at the time it was to be undertaken at Whipps Cross hospital instead which i decided against. Things may have changed now though.
Eventually i went with another consultant in another London hospital.
I have worked with Richard Schilling on committees and he is a very capable bloke who has trained a number of UK EPs and runs the London AF centre as well as his work at Barts. Like many leaders in their field he can be acerbic when dealing with idiots! Never been treated by him.
Prof Schilling did my ablation 10 years ago. He was great. My ablation was difficult, he used a cryo balloon on 3 PVs and RF on the 4th as it was too large. Then other areas needed ablating as well with RF. All in one session and it could only have been done by someone who was genuinely an expert.
Bart’s has an excellent reputation. I’ve met Prof Schilling twice and although he has never treated me, he was never acerbic with me, even though I am an idiot....😉. You will be in very safe hands!
Thanks for feedback. During my research before I had come across st Barts. Like you guys say they seem to have a very good reputation. I’ll have to do a bit more digging and find someone in particular that I’d like to perform the procedure. It’s suddenly got very real! Big decision. Worried that if it does wrong it could screw me up for rest of my life but complications seem fairly low so fingers crossed 🤞. S***ing myself if I’m perfectly honest but alternative is too stay as I am which is most definitely not doable.
Does anyone have any feedback on the drug sotalol that he’s suggested I go on and also anyone with or had SVT?
Dr Simon Sporton at St Barts is booking me in for cryo ablation this year. Very informative and has a very good track record. He treated my wife to an ablation November 2018 for SVT and it was 100% success. His initial prediction was a 98% or thereabouts chance of success. Very confident and talks through the whole procedure in detail.
When are you going in nick? Mines some point this year hopefully so might see you in there 😂 great news on your wife. So she had it done once and she’s as good as new? Sounds like a good dr. I’ll have to check him out. I know they’ve got quite a few at st barts and a few of them come in the top ten voted by peers list as well.
I'm on Dr Simon Sporton waiting list - I thought he suggested February 2021 but I may have got that wrong. I have had pre- echo cardiograhs and recieved his diagnosis/ procedure letter. Hopefully soon!!
It must be 10 or 12 years ago now that someone I knew went to have an ablation with Prof Shilling. He went in to have an ablation, talked to others in the ward and then decided to go home and have nothing done. Of course, I have no idea what he's had done since! I think it was him who directed me to this forum.
I guess it was what the other people in the ward told him. Perhaps they'd already had ablations that hadn't worked. I've had three, but still have AF, but it's not as bad since my third one. I thought my first ablation would give me a complete cure, but it didn't.
I had svt and I thought it was relatively easy to diagnose. I’m no medic but I cycle with a chest strap heart rate monitor. When my svt kicked in and out the hr changed instantly from say 100 to 140 then back down again after say 5 minutes. I had an implant recorder fitted and this enabled me to record sessions when I thought I had svt. This recorded 8 minutes worth each time. This convinced the cardiology team that it was svt. I was worried about having an ablation but my symptoms got progressively worse so I had an ablation under GA at Wythenshawe Hospital. Not as bad as I expected and I’d have another if needed but I’ve been ok since.If it is af I think that is more difficult to stop than svt.
Since November my symptoms have got progressively worse as well. I don’t really have a choice now. If only Elon musk would set his mind to it. I don’t seem to be able to tolerate drugs so there’s no alrernative. My EP asked if I had any way of recording it when it’s out. I’ve just got the Apple Watch so I can use this. When I told him he said that’s perfect just use the ecg on that and send the pdf over and it’ll also constantly record heart rate so can see how high/low it gets.
My condition got progressively worse so that eventually my hr was too high almost daily for over 3 hours or more.As to the apple watch, I’m not sure if this will detect svt although another reader said it could. My fitbit doesn’t but it can’t send en ecg either. If the watch doesn’t work I believe that a Kardia device will detect it. My chest strap hrm picked it up but only showed hr, ie no ecg. I find it odd that you are being asked to provide the proof, surely it is down to the medics to do this. My diagnosis began properly after they chose to give me an implant recorder. A 7 day Holter may pick up the symptoms but it depends on how often you get them.
I think in regards to providing evidence this was merely a case of providing more data as apposed to anything conclusive. I’ve got to go in for a procedure where they will try to induce the arrhythmia while I’m under sedation to see if it is definitely svt and then they may be able to ablate there and then. 🤞🙏 hoping that’s the case and I can crack on with life again.
I found adrenaline (like a short fright might induce) caused my svt to kick in. I think this may be how they induce it in hospital.It sounds as if you are going in for an ablation. They put the catheter in, if they can set off the svt then they ablate (scar) the area. If they can’t cause the svt to start then they don’t ablate and no change is made to your heart. I’d prefer it if they found where the problem was and dealt with it if it was me. I’m 64 and reasonably fit and have had no issues since. I still have to download recordings from my loop recorder every 6 months or so for the cardiology team to look at. My next decision is, should they leave it in or take it out when its battery dies?
It was put in in Sept 2018 and it has about a 3 year life so next Sept.I thought they automatically took it out but apparently they sometimes just leave them in. It isn’t noticeable.
Hi, I had cryoablation and like you quite young (had at 38). Like anyone else, I had some worries and reservations, but it’s a safe and routine op (on the day I went in it was like an ablation conveyer belt)!
Absolutely nothing to worry about and I’d do it again if needed.
I was referred to St Barts for an abalation, but it was agreed after several consultations that this could be deferred. I saw several consultants there, including Professor Lambiase, who runs the department. I was very impressed with the quality of the consulatations and the hospital is considered to be world class. I would say that this would be a very good place to have the procedure done.
I also take Sotalol which is a beta blocker. It’s an older drug than Flecainide and you find some here who don’t like it. After taking it for about two and a half years I haven't had any major side effects. If you have been prescribed Sotalol specifically, then there must be a reason for preferring it to Flecainide in your particular case, so I would ask them directly-I’m guessing that it’s because it slows the heart rate considerably which would be required to deal with the SVT.
Thanks for info on st barts. That’s reassuring. Hopefully I can get a consultation there soon and check it out for myself. The reason they’ve put me on sotalol is because I had such a bad reaction with flecainaide. EP is hoping I’ll be able to tolerate this until I have the ablation. Didn’t bother me before but since he’s said I need it every time I think about the ablation it makes me feel ill. The thought of someone messing with my heart at my age is pretty scary I’m not gonna lie.
Hi,Sorry you are feeling worried. Barts are excellent - I am older than you (53) and had an ablation for atrial flutter in October 2020. This diagnosis was in July - originally they thought I had SVT as in February 2020 I had been in A&E with a heartrate of 250bpm. I can remember having ‘palpitations’ throughout my 30’s and 40’s , but it was never problematic. They acted quickly in 2020 as my heart stopped self-rectifying and stayed in persistent flutter despite a high dose of Bisoprolol (beta blocker). I am no medic, but given your age it sounds more likely that you have SVT.
The ablation procedure was far less worrying than my imagination!!! I am a massive worrier with medical things, but was in and out the same day and awake but sedated for the procedure. Barts are very professional and I would not hesitate to recommend their care.
If I can help answer anything else then please ask.
Thanks for info eastern. Very helpful. My EP has told me exactly that. That he thinks due to my age it’s more likely to be svt and that this has a much higher success rate than AF. I’m hoping he’s right 🤞the thought of being put on sedation I can’t even stomach currently. I’ve had sedation in the past and was conscious of what was going on but could t do anything about it. Not the type of experience I want when someone is inside my heart 😂 I had an operation on both my eyes and had to have them both cut open while I was awake and this didn’t bother me too much, it’s just the thought of someone in my heart makes me feel sick, probably because it currently feels so weak and sensitive. I would much rather be put under GA. I’d only pass out once they started messing around anyway 😂
To add to this, my understanding is that svt occurs because the electrical signal that tells the heart to beat takes a short cut and this makes the heart beat too fast. The longer this short cut is used the more established it gets so the sooner it is blocked the better. The catheter is directed to the right place and a small area of the heart is burnt to cause a scar (harder skin) which blocks the rogue signal. If you watch some of the A and E programmes on the TV you will see that putting a catheter in to either a heart or a brain is very routine nowadays so I don’t think it should be particularly worrying. In fact as I was on GA I was awake for some of the time and I could see the catheter on one of the monitors by my bed.
I’m good for watching that happening on screen 🤢😂 I’m not squeamish usually but there’s just something about my heart currently that I can’t get my head around someone routing around in there. Knock me out and crack on is my current mentality.
Thanks for info again. Slightly worrying that svt points to a rapid rate. When mine goes it’s more irregular than it is rapid. That’s when compared to some of the rapid rates on this forum at least. I think it got to 120/130 the last time it went but it’s more the feeling of skipped beats for me. Totally wiped me out and I can’t do anything other than lay down and wait for it too stop usually
I found I got really breathless and only later realised that it was because my hr had suddenly shot up. I found by chance that if I lay on my back and relaxed I could usually reset my hr. Not always easy when in public.Don’t worry about the ablation, I know it is natural but it isn’t a big thing nowadays.
There is something called a valsalva manoeuvre that is supposed to help. It didn’t work for me but I found that lying on my back reset it. It was weird with my svt. If I bent down to pick something up off the floor or to look in a low cupboard it would set my svt off. I had to learn to pick things up by bending my knees and crouching down instead. It is all linked to changing the blood pressure in the heart.
Can I ask why the private EP is not doing the procedure? Just wondering because usually people go with the person they book the consultation with and yours is one of the top docs.
He said he’s more than happy to do it himself if that’s what I choose to do. He just said there could be a very long wait if I go on his list and thought it might be more convenient for me to go to somewhere slightly close to me. He did say he would have no problem in sending his family or friends to barts and that the wait time is likely to be halved or better but if I’m willing to wait then he is more than happy to do the procedure. Could be up to a year on his list though unfortunately.
Gutted to be honest as I wanted him too do it so mulling over whether it’s worth the wait.
Thanks, that makes sense. If it is SVT hopefully it won’t be very complicated so you won’t need ‘the best’. I just went with my cardiologist’s recommendation and the EP who did my ablation at Harefield was very good and I was given a cancellation so that speeded things up.
Has anyone else had any experience with the drug sotalol? Not had many comments touch on the drug so I’m assuming it’s not widely used across this forum at least?
I’ve been on Sotalol two years now with no side effects. It is a combined beta blocker and an anti arrhythmia drug. It is prescribed here in the United States although from reading others on this forum it is not used so much in Europe.
I was on 1.25mg of Bisoprolol. This slowed my hr down and stopped the svt but I wouldn't want to stay on it forever. Luckily since my ablation I'm not on any meds.
I was ok on 1.25mg in terms of side effects. Only problem being it’s not enough to keep my arrhythmia in check. I need a minimum of 2.5 to keep my heart under Control but once I up it I start getting problems. The beauty of drugs 🙄
Glad you’ve come off drugs entirely that’s great news and was going to be my next question. How have you felt since? Do you feel back to your pre AF/SVT days?
When I was on Bisoprolol it stopped my hr going over about 90 so if I wanted to cycle or walk up a hill where my hr would need to go higher than this I would be very tired because I couldn’t get enough oxygen to my muscles. I am much better on no meds. After my ablation I tried to keep my hr below say 120 max in case I triggered svt again. I slowly increased this so I now let it go to about 150 if it needs to. My garmin cycle computer and hrm show me a graph of hr on my pc. As long as my hr rises and falls at a sensible rate, not like an on off switch then I am ok. I can look at where it is high and it is either when I am riding up a hill or been in a stressful situation near heavy traffic for instance. I can’t remember pre svt much but after having the ablation and nearing 65 I accept that I’m not the quickest cyclist in the village etc any more. I just remember my svt days and be thankful that they are behind me.
That’s good news mate. Glad to hear it’s improved for you. I have no clue how I’m going to react as I’ve not come across anyone my age who’s had these issues so therefore the ablation as well. Don’t really want to have one so young but as I said before don’t seem to have a choice. I’d love to know what the underlying cause is as there’s got to be one, especially at my age. Doesn’t seem anyone’s got to the bottom of a cause on here though? I’d love to hear from anyone who’s either been told what there underlying cause may be or better still has been treated for it.
I can't answer that. I just took it to be part of getting older but that doesn't really apply in your case. I think after you have had the ablation then 12 months later you will almost have forgotten about it. I follow this site and people have far bigger issues to deal with so I consider myself lucky in that respect.
Yeah that’s certainly one way of looking at it. Good that yours was successful. I have read many on here that haven’t been quite as successful though which is worrying. Be nice to figure out what may be causing it before going for something as permanent a solution as an ablation. By permanent I mean once you’ve had it there’s no going back. Not necessarily keeping the af at bay permanently
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