Post-ablation pulmonary vein stenosis report

I thought I would update folks on my post-ablation pulmonary vein stenosis progress.

History:
Oct 2012 - PVI ablation by Dr Tchou at Cleveland Clinic
Feb 2013 - stenosis detected in LIPV (left inferior pulmonary vein)
May 2013 - stress test and lung perfusion to determine how much of my lungs serviced by the stenosed vein
Aug 2013 - Pulmonary vein angioplasty by Dr Prieto at Cleveland Clinic

I had a Feb 2014 followup with Dr Prieto regarding the stenosis. She did a CT scan of my heart when she looked at the pictures, she said my stenosed PV and 2 stenosed branches of that PV that she ballooned were all "still wide open" (her term). She said the prognosis for folks with acquired stenosis are better than for the kids with congenital stenosis, because our PVs tend to stay open after ballooning once or twice. Dr Chou (and I too now) have high praise for Dr Prieto. It is good that she works on the children, because she is used to tiny veins. Dr Tchou once told me once that she "never has any complications". I had no problems from her procedure, but the anesthesiologist working for her that day tore up my throat pretty badly (Prieto puts you completely under, where I was awake for my ablation, so the anesthesiologist will intubate you). Hans on this group told me that vitamin B and other nutrients are beneficial for making sure the stenosed veins stay open after treatment (see article below), so I upped my intake of these by 50% post-procedure.

I had a worsening cough leading up to the procedure, so she had my local GP doctor check for an upper respiratory infection. If you
have an infection there, she will not proceed with the operation. I had no infection, but my cough had gotten worse and worse in the month leading up to my Aug 1 2013 PV angioplasty - she deduced that it was likely due to the stenosis. I was relieved that she said she would go ahead with the procedure because I was getting pretty miserable with that cough. It was deep, constant, raspy and very troublesome. But it faded in the 3-4 weeks post-procedure.

The PV procedure was much easier recovery than the ablation itself, even though they both go into the left atrium via the right atrium. Dr Tchou told me that is probably due to the fact that he pumped about a gallon of fluid thru my heart to cool the catheter, where her procedure only requires a few cc. My groin wounds from her procedure healed much faster with no complication, where I had some bruising and a small hematoma there after the ablation procedure. Prieto's team is cool - they do a little chalk talk just before the procedure with you conscious, so everyone working on you is up to speed, and they even let my wife in the procedure room for that part.

She said that even though my PV pics looked good, but I am "not out of the woods yet". She said if I am going to re-stenose, it will typically happen in the first 1 to 1.5 yrs after the angioplasty. I have another followup with her in Oct 2014 at which time she will do a cardiac MRI and I guess either release me (if PVs still open) or do another balloon procedure or continue watching it. I am still feeling quite well and still climbing my local mountain twice a week with no problem.

But... I have developed an infrequent minor cough that is a bit reminiscent of the bad cough I had leading up to the ballooning procedure -- it has not progressed so I don't think it will get worse, but who knows. It is very deep and on the left lung where I had the PVs worked on, but it is so infrequent (a cough or two every couple days). Dr Tchou thinks my PVs will be shown to be stable in the Oct 2014 MRI. FYI, For the PV angioplasty, CC charged my insurance company ~$50K and the ins co paid about ~$25K - I had to pay about $2K as I recall.

I would be interested in hearing about others' experience with PV stenosis after ablation, so we can all learn as much as possible.

Best regards,
Gary Hauser



Edited 2 time(s). Last edit at 04/13/2014 09:52PM by gehauser.

Hi Gary,

Thanks for the detailed report and Im very glad to hear the stenting seems to be holding. PV stenosis bad enough to require stenting, or any treatment really, isn't very common these days. At least not with most of those who have posted here at our message board in recent years. There were a few reports from some others who quite a few years agoi= from somewhere around 6 to 9 or so years ago who discussed their experience with it who read this forum.

But I dont recall any others reporting here since the advent irrigated catheters and more sophisticated mapping and ICE use become more prevalent. I also recall of the hand full of reports here in the earlier years most all were from overseas like New Zealand or Australia for one gal I think her name was Melissa or Melinda of some such name that got PV stenosis much have been 6 years or so ago and another one from the UK and possible one or two more 8 to 9 years ago from the US.

But none were done by anyone close to what I would call an top tier ablationist. Though I know Dr Tchou has been around a good long while doing procedures, though I'm not sure how many he has done over all, though I imagine its a fair number by now. However, I do know that a lot has changed at CC since their AFIB glory days when their rep for excellence in ablation was established under Natale and the team of top EPs and fellows working under him there.

Of all that remain there at CC, Dr Saliba has one with the best over all reps according to a number of people in the know Ive conversed with in this field. But alas, most there now have not kept up with the protocols Dr N set in place when he was running the show, and apparently there isn't so much a consistent theme or vision from one doc to the next there, from what I gather, or at least not the same protocols upon which their stellar reputation under Dr N was established.

Which is to be expected I guess, when you have new leadership they usually want to put their own stamp on their office .. for better or worse. So the idea of getting a consistent CC ablation based on years ago positive experiences may, perhaps, not be quite as consistent an assumption as it was in the past?

Anyway, Im hoping that your report, and that of Merlinworks below who just now reported another recent Nov 2013 PV stenosis at CC, doesn't imply something of a pattern showing up now at CC? Hopefully, instead it's just a fluke unfortunate coincidence that two of our readers have quite recently each had cases of PV stenosis from CC in a short period ... That is something you are more likely to find in the much lower volume centers.

There were perhaps a couple a people a long while ago who had such a procedure pass through our board here, but you might have to do a search that includes all the past forums to find all accounts of PV stenosis that required a procedure to fix. I just ran a search of all forums since the beginning of the message board with the search terms 'PV stenosis stent' or 'PV stenosis stents, and pulmonary vein stenosis and only found a few references over the last 13 years.

In any event, PV stenosis typically you will find more often at the lower volume centers and newbie EPs who do less than 25 to 50 ablations a year, but even then it is considered somewhat rare these days. Although it can happen even with more experienced docs as well on occasion.

Thankfully, we havent had to delve into this issue often at all here to date.

All the best to you Gary and best wishes on this all being behind you now! .. you too Merlinworks hopefully you can avoid the stent to begin with. Please keep us posted too.

Shannon



Edited 5 time(s). Last edit at 04/15/2014 11:22AM by Shannon.

Unfortunately, PVS was found in the follow-up to my second abalation (CC Nov 2013 Dr. Callahan) just last week. True there is a dearth of info on the subject and even though I've been visiting the board since I started having AF episodes in Aug of 2009 I registered for the first time yesterday so I could PM Gary specifically about how things are going. I have an appointment scheduled with Dr. Prieto for 5/23 but I am trying to get in sooner. Left superior is 75% stenosed and right superior is 50%, I am asymptomatic at this point. They did a perfusion scan, but I haven't heard any details as to results yet.

Gary's post was really the only one I could find detailing a personal experience, everything else is technical abstracts/reports from various studies over the last thirteen years or so and all paint a pretty bleak picture. So I was grateful that Gary responded to my PM with some good news. I know I don't have the education to literally interpret the info in all those reports let alone read between the lines and I am internet savvy enough to know that the answer usually lies between the extremes of what's read in the search results, but human nature being what it is, I basically assumed the worst and was freaking myself out.



Edited 3 time(s). Last edit at 04/14/2014 11:54AM by MerlinWerks.

MerlinWerks -- My stenosis was only in the LIPV (lower left) and its two branches - it was about 70% when Dr Tchou looked at it in Feb 2013. According to Prieto, it had gotten worse than that by Aug 1 when she did the angioplasty.

Don't fret too much - I think mine is stable and if not, I have no qualms about having Dr Prieto do another angioplasty -- I did not like that cough I developed 1 month before her procedure - that was a bit scary, but I never coughed up blood.

Thanks Gary I appreciate the encouragement. I've pretty much calmed down now, spoke with a nurse at Dr. Callahan's office today and that has helped as well. Was told aerobic exercise is still ok and I switched my blood thinner from Pradaxa to Xeralto. At 4 mos post abalation I am pretty much asymptomatic wrt the PVS, an occaisional dull ache in my left pectoral region and I have good exercise tolerance and no AF. Still would like to get the consult sooner than 5/23 and most likely will be able to since that date was straight from the scheduling software and was told that her secretary will probably be able to do sooner once she looks at the schedule.

Hey MerlinWerks, how are you doing now?

My PVS is stable based on fall 2014 testing by Dr Prieto. She said I don't need to see her for another 2 yrs. I am not symptomatic at all with it.

Also, I am now 2.5 yrs post-ablation (Dr Tchou) and still have had no a-fib episodes. In fact, I no longer even have the skipped beats that I was continuing to get in the early months post-ablation.

Great to hear Gary,

Am glad things worked out so well with Dr Prieto's repair job, Ive heard some good things about her as well.

Thanks for keep us posting one year after your last message on the subject. Hopefully Merlinworks is doing similarly well a year later as well,

Cheers!

Shannon

I guess it's been a while and I never followed up, but everything is fine here. Dr.Prieto placed two stents, 12mm if I recall, had my one year followup a year a go and she said come back in five. Still have some odd flutters and pvcs, they have been a little more frequent as of late and the episodes lasting a little longer. I wanted a new local cardiologist and I have my first appointment him tomorrow, so we'll see what he says. Otherwise active and no afib since 11/2013.