AV Node ablation.

[Tenshun]

I have a meeting with my EP in 3 weeks time to discuss my ongoing afib issues.

I'm assuming he will be advising me to go ahead with an AV node ablation to help control my afib, which l now get every other day lasting on average for 4/5 hours.

Although there are lots of positive stories here regarding Pace and Ablate l am still worried about having this done.

Since being diagnosed with Afib I have developed a number of other health problems which are really getting me down.

Almost every morning l wake up feeling quite unwell with nausea, stomach and body pains. I struggle to get out of bed before lunchtime and dread any early morning appointments etc.

So far the doctors have been unable to identify the causes and l am beginning to lose faith as to whether they ever will.

Having had a couple of ultrasounds which didn't show anything, I am now on the waiting list for a MRI scan of my face, back left side and shoulder. I believe having a pacemaker would rule this out so are there any other options.

I also worry that my severe left side pain is masking a heart problem which so far has going undetected

[baba]

"I am now on the waiting list for a MRI scan of my face, back left side and shoulder. I believe having a pacemaker would rule this out so are there any other options."

No problem having an MRI with most modern pacemakers.

[Tenshun in reply to baba]

Okay thanks for your reply.

[Hylda2 in reply to baba]

I was refused an open scanner mri

[MummyLuv]

an option to pace and ablate is a mini maze. Depending on where you live will depend on whether you can access unless you can afford to do privately. There are quite a few posts on mini maze if you google. I am 6 months post mini maze and so glad I went that route

[Tenshun in reply to MummyLuv]

Hi there, thanks for your reply. I have been following your journey with great interest and l am so pleased you have managed to get your afib under control.

I contacted Dr Wolf's secretary a few months ago asking whether l would be considered a candidate for the min-maze procedure. The response from Dr Wolf was not to have an AV Node ablation as the procedure is irreversible and would not get rid of my afib.

Unfortunately the cost of the mini-maze is just too expensive as l would be funding any treatment on my own. So I have been living in hope that maybe in the near future it would become more available and less costly. I also reside in Scotland

[MummyLuv in reply to Tenshun]

yes, that was the response from my surgeon too when I talked to him about pace and ablate, it is an absolute last resort.

Hopefully ERI won’t be too long in getting their hybrid program up and running so you can access something similar here in Scotland. I actually see them on Friday, i’ll ask.

[MummyLuv in reply to MummyLuv]

PS to go to doctor wolf was several times the cost I paid here in the U.K.

[Tenshun in reply to MummyLuv]

That would be great if you could ask that question as I'm sure many others might consider a mini-maze if it was more affordable and done here in the uk.

[Profound15 in reply to MummyLuv]

hi Mummyluv

I’m on a daily maintenance dose of flec with bisoprolol. Whilst it has helped with afib (once in last 2 years) I still get daily ectopics which affects me mentally. Could I ask if the mini maze stops you from having pacs etc. please. An ablation is an option but it seems the mini maze appears to be the more effective option. Can I ask roughly how much it cost for the mini maze in the U.K. please (read the wolf one can cost $100000). Thank you in advance.

PS I’m originally from Edinburgh but live in Hampshire now

[MummyLuv in reply to Profound15]

hi there, the mini maze focusses on afib. I get occasional PVCs now which I wasn’t aware of before having been in afib all the time. They don’t bother me but I’ve had Bigeminy 3 times in the last 6 months and that does bother me as I feel faint. Obvs I am still in the blanking period. I have an appoint with my surgeon today and we are going to talk about the PVCs and Bigeminy and I plan to do a 6 month update post on here after that

If you were considering it in U.K. private cost is c£35k however there are surgeons in Brighton and Plymouth you could ask to be referred to on the NHS to discuss. Mr Johnathan Hyde and Me Malcolm Dalrymple Hay.

[Profound15 in reply to MummyLuv]

Thanks Mummyluv that’s really helpful. My medication seems to be working in terms of the afib but the palpitations get me down. I’ve been getting them for 40 years and before afib they never really bothered me but they do now. I get two or three a day which isn’t much I know but they do affect me psychologically. They seem to do with the gastrocardiac affect which is probably related to the vagal nerve. Im exploring all the options open to me so thanks for the information

[MummyLuv in reply to Profound15]

you may find given your low burden that surgeons don’t feel that mini maze (or hybrid) is appropriate. Good luck in your research

[4chickens]

My EP was keen on pace and ablate but the surgeon who I’ve transferred to feels it’s a last resort s and I’m not at that stage. He has put me on the waiting list for a convergent mini maze at Sheffield. Saying that many people are very satisfied with pace and ablate, it’s all about having choices , options and a voice. Hope they get to the bottom of your health issues

[Tenshun in reply to 4chickens]

Thanks for your reply and well wishes. It was my EP who also suggested pace and ablate or for me to take amioderione. I also feel l'm just not at that stage and would rather leave my options open at this moment as things may change in the future.

[JJHRT]

Have you tried a regular ablation? What drugs are you on? What about an angiogram or at least a stress test to check your heart? Diabetes will cause nausea. Many unanswered questions. Hopefully your doctor has addressed then. Ablate and pace is a pretty safe option but should be saved for a last option. I’m 61, dealing with afib since age 27. Heart attack age 31. Currently on Amiodarone which works wonders. I’m aware of the risks but to me it’s worth it. My advice: get another opinion to check for other options. Good luck! God Bless.

[TanyaSo]

What if you just get a pacemaker and observe how it works for your heart. I have a pacemaker more than 10 years, and cardiologist said it keeps my Afib under control, and extinguishes fibrillation.

[Jaco53]

I’m not a doctor so this is only my opinion through my own experience. And AF is a very individual thing in my experience. Personally I believe that AF initiates from stomach issues that agitate the vagal nerve. I used to get mine from drinking cold drinks too quickly. I’ve had 8 electro cardio versions over a decade , which all reset my heart beat immediately. Since my ablation, whenever I over eat or eat something I know will cause me issues I wake up in the middle of the night with a rapid heart beat. I usually sit up, drink lots of water which settles my heart down and allows me to sleep. I’ve had my ablation 4 years ago which has been successful. I get the odd pop and hiss and skipped beat occasionally. But otherwise my operation went well, as did my recovery.

Your left side pain could be stomach related too, as any digestion issue can produce that symptom . Have you tried to change your diet ? Have you put on weight ? Do you notice it while you’re lying down ? How are your exercise patterns or sleep patterns ? What time do you have your last meal ? How much alcohol do you have ? All things that can effect your digestion ? I’d start by considering your stomach and seeing what effect changing food drink or water consumption might have. Do you sleep flat or sat up by a bit ? Which side do you sleep on gage you tracked your heart beat while sleeping to see if there are any issues ?

As I said at the beginning AF is very personal. Don’t give up as I know you will find a solution. I had lots of doctors tell me that AF is not caused by drinking cold drinks until the main cardiac consultant said to me it can be caused by that. I spend along time finding what works for me and I’m sure you’ll know your own body and what does or doesn’t work for you. Good luck and keep trying to find solutions.

[Profound15 in reply to Jaco53]

That’s really interesting Jaco. Im convinced my ectopics occur by what goes on in my stomach. Something the cardiologist in York calls the gastrocardiac syndrome. In my case if I’m constipated (I take Laxido every second day) I get ectopics and sometimes a fluttering feeling as if it’s trying to go in to fibrillation. I’m on daily medication so it must be working to prevent full blown afib although I still get the missed beats etc. I find it really affects me mentally but I’m trying to be strong which is easier said than done.

[RaySyl]

Hi Tenshun, re Pace and Ablate - yes it is a last resort but, for me, the prospect of 'living' with Persistent AFib for the duration meant that undergoing the procedure was a 'no brainer', as they say! Anyway, the PM was inserted last December and the AV node ablation carried out in February this year. The prospect was rather scary but the outcomes, for me at least, are beneficial; more general energy, fewer episodes of lightheadedness and breathlessness and the comfort of having a consistent heart beat. My AFib has not been cured, and never will be - my Atria continue to do their thing in their own crazy way, but they don't affect the way the red stuff is coursing around my body. I am concerned about the long term effect of having a single controlling lead in my Right Ventricle rather than two leads, which is the norm, but I will have to live with that - there really his no alternative. More about my situation in other posts if you have the time and inclination to read them.

[Tenshun in reply to RaySyl]

Many thanks to everyone who got back to me. I will try and answer some of the questions asked and give a bit more information regarding my own situation.

I have altered my diet to try and help my episodes of afib. Since my diagnosis l not any alcohol, cut out spicy food and fizzy drinks now just the odd coffee although l still drink decaffeinated tea.

No white bread either and l have tried to eradicate any other foodstuffs l think causes me an issue. My weight has increased due to my inactivity, now at 13st which is about a stone and a bit more than l want to be. I used to play golf, hillwalk do a bit of DIY and gardening but most of these activities now bring on my afib.

I also have persistent back ache and trouble with both shoulders due to injury which are aggravated by these activities.

I do believe stomach issues are linked to my afib as sometimes l feel like my stomach is pulsating, prior to an afib episode, if that makes sense. Since being diagnosed with Afib l have been diagnosed with a small hiatus hernia and some diverticulitis. I've been checked internally both up the way and down but have been told there is nothing there to be causing my severe stomach pains. My cardiologist was not convinced that stomach issues caused afib. I believe my first episode of afib started after a session in the gym lifting weights which caused a really bad episode of reflux.

So far I have had one crynoablation, which has been deemed as successful and another aborted one due to an issue with my AV node. Which is why the pace and ablate was proposed.

Sleep patterns are not great due to body pains so I sleep mostly propped up or on my right side as l cannot lie flat or on my left side. My blood pressure is fine and my resting heart rate is low 50's although for some reason it dropped to mid 40's last night.

Sorry if that is a bit of a ramble just not thinking straight today.

[MikeyF in reply to RaySyl]

why couldn’t you have a bi-ventricular PM?

[RaySyl in reply to MikeyF]

I have a rare (0.5% of the population) anatomical anomaly called a Persistent Left Sided Superior Vena Cava, which means the the LV lead cannot be pushed through the Coronary Sinus. It’s worth Googling to learn more!

[reinaway]

I've just read your post and all the helpful comments in the reply from people (I couldn't do without this forum in my AF journey) and I have just spent the last three months going through the pace and ablate procedure. Whilst I am 12 years older than you I spent the last 10 or so years searching for an answer to all the pain and discomfort AF has caused me and resisted going for it. So far I have not had any bad episodes and any symptoms have been hardly noticeable. After the six weeks were up and I was called for the node ablation I was asked if I wanted to go ahead with it and I was in two minds because my AF had been so much better with just the pacemaker inplant. However I wanted to get it all done so I went ahead. Therefore you could just do the pacemaker part and see how the outcome was instead of abating the node which is the irreversible part of the procedure. Best wishes which ever path you choose. 😊

[Tenshun in reply to reinaway]

I agree that this forum has been of great benefit to me as well. So much knowledge and in depth research done by fellow afibbers which puts some of our cardiologists to shame. When l have my meeting with my EP l will be asking him more about pace and ablate and any other variations or treatments that might be available to me. Hopefully l will be able to come to a decision after that.

Thanks again to all who replied to me.