Pulmonary vein stenosis

[Herb8]

After my second ablation, a CT scan showed an 80% stenosis in one of my pulmonary veins. I am to meet with another cardiologist to discuss ways to fix. Anyone have similar experiences?

[rosyG]

It's good they picked this up as often missed. The most usual cause in adults is ablation for AF but it is very rare. I think they will look at stents- as for any other narrowing f arteries- and balloons and you'll have to have the anti platelet drugs that are used after stents given. I'm not sure anyone on here will have had this as it's rare- be interesting to see I hope it hasn't caused you problems. Hope it all works out well for you.

[BobD Volunteer]

As Rosy says this is an extremely rare occurrence these days due to changes in the way ablation is carried out so unlikely to be many people with any experience. I once had a 1 in 5 million event which could have been fatal but for some quick thinking so bad things can happen to the best of us.

[Fryguy]

Hi , I am a 41 year old male with paroxysmal afib and complex atrial arrhythmias. I had a pulmonaryveinisolation and my MRI showed one pulmonary vein 50% and the other 70% narrowing . Not sure when they consider it serious as I am waiting to talk to a electrophysioligist/Cardiologist... I am interested to see what you find out . All the best to you 👌✊

[Skippy_h]

Hi Herb8, it sounds as if we've had similar experiences - I had my first ablation around a month ago and a few days after being discharged started feeling unwell. After 2 trips to A & E and to the GP I was diagnosed with pulmonary vein thrombosis/stenosis. I spent 65 hours on a heparin infusion and was then taken for another CT scan where I was told that some of the veins are blocked but others have good flow. I am now taking riveroxaban, bispprolol and colchicine and will be going back for another CT scan in a month or so to see whether any of the veins have unblocked. Send me a message if you'd like to chat, would be good to speak to someone who's going through a similar experience to me

[PVSafterAblation]

I’d be keen to see how you are doing a year on? Did you have any success with the drugs of have a procedure? I had a similar experience but with a cautionary tale to be aware of. My AF returned following a cryo ballon ablation in 2019 and had a second ablation (Radio Frequency) a year later in July 2020 to ‘touch up’ the scarring required to block the AF triggers again. The AF was gone But shortly after I started to get breathlessness upon exercising whic I put down to trying to get back into it too quickly. However, that steadily got worse and I would have sore lungs the day after if I pushed through it and later caused me to have a number of lung infections. Despite my suspicions it was linked to the ablation, heart CT and MRI scans showed my heart was healthy but the MRI coincidentally picked up a lung nodule so I was referred down the lung cancer route. Cancer was ruled out but asthma was then ruled as a possibility as there was some thickening of the airways found so I was given 6months of asthma treatment to see if that helped resolve the issue. Meanwhile, my fitness and exercise tolerance just continued to steadily decline. By November 2021 I had read countless medical journals on breathlessness and I was convinced that it must be related to the ablation and specifically pulmonary vein stenosis. All of the symptoms fitted; it has consequential damaging effects on the lungs when the heart rate increases, it causes a sensation of pressure build up in the chest which is relatively quickly alleviated when the heart rate comes back down and pulmonary pressure is eased. I finally managed to convince my consultant of this in February 2022 and a Chest CT with contrast timed for pulmonary vein inspection showed I had pulmonary vein stenosis in 3/4 PVs (99%, 70% and 50%). As one vein was so close to being completely occluded, I’m May I was fast-tracked into a procedure to deal with the left 2 pulmonary veins as they were the most badly affected and a stent was successfully placed in one vein but a second ruptured during the balloon angioplasty part resulting in emergency open heart surgery to close it up again. I’m now out of hospital and mostly recovered from the open heart surgery part but waiting to see if any improvement has been achieved with the pulmonary veins or if I am even worse off than before. I have been told the odds of getting to where I am now are infinitesimally small so wouldn’t want to put anyone off ablation for AF but would be nice to learn if there is some improvement to be had from someone who’s been through this too?