What happens when AVNRT ablation fails twice?

[Vunel]

Hello Everyone. I have been a long time lurker for awhile, however I have hit a wall and desperately need the advice of those who have been through this.

I am a 32 year old female. No heart disease. Perfectly healthy. A little background--My SVT started in my adolescence with episodes of racing heart that no one could explain. In fact, for a long time, I was told I had anxiety. These episodes faded during my high school and college years and returned with a vengeance nearing my mid-twenties. One morning I simply rolled out of bed and that typical ka-thump, THUMP triggered and my heart took off at 245 bpm. I was rushed to the ER and finally, after 25 years, was able to catch this phenomenon on an ECG. SVT. I was given a shot of aeodesine which broke the arrhythmia. I was put on 25 mg metroprolol succ er, which seemed to control the episodes for almost three years.

Fast forward to this past year. I had my first ablation in May (typical adult AVNRT), and sadly I had another episode a week after and then six weeks after. Both were converted easily and felt much slower. Clearly a pathway was missed and I ended up back for a second ablation in November. The EP had to get close to the AV node to make the burn, but said he was unable to induce the arrhythmia after. Both times he could easily trigger them. Like clockwork, a week later I was in sustained SVT for 30 seconds or less using the valsalva maneuver to correct. Two weeks after that (three weeks post ablation, last night) I was sitting in the car on the way to a holiday party and here we go, 200 bpm and none of my usual tricks worked. I ended up in the ER, thankfully captured on the ECG for my EP, and was corrected using Cardizem (so much easier than aeodesine).

When I called my EP after the second ablation, first incident, I was told this is common after the procedure for 3-4 weeks. I just have this nagging feeling something is wrong. I cannot tolerate another failure. I have been suffering from anxiety since this on-set as a child, and the thought of a 100% fix was too tempting. I fear that I will have to live with this for the rest of my life or that I have now made this worse by trying the ablations. Before them I was having episodes every year or three. After the first ablation I was experiencing them within months of each other. After the second I am experiencing them every few weeks. I am devastated. The whole point of coming off the beta blocker was to have a child medicine-free and to ease my worries when traveling/away from an ER.

Living with this condition is horrible. I am constantly worried if I am not near a hospital or in a public space that if it occurs I will need to immediately leave. It is an awful way to live your life.

I hope someone out there can relate. I really need to hear I am not alone.

[tom_h]

Yes it is.  It's a horrible way to live your life, and that's exactly how I lived mine for 54 years; 6 to 60.  I dealt with it.  It was intertwined in my daily life.  There were thing I wouldn't hesitate to do, and others in which I would access the "risk, and decide if it was in my mind, safe or not.  Sports: I was involved in sprint cycling, and speed skating.  Both were on an oval track, so Ibwas never far from where I started.  But road cycling I'd avoid. I could be anywhere if it fired up. I never went on a cruise; too far from a hospital.  My family did a lot of ocean sailing.  They sailed to Bermuda, I stayed home.  That was something I'd never dream of doing despite my love of open water sailing.  I just wouldn't do it.  So I got use to this relationship I had with my SVT.  It was part of my lifestyle.  While I challanged it, I didnt think I let it control me.  But of course it did.  I just gave you some examples of how it controlled me. The point of all this is to tell you that ypou aren't alone.  In my 7 years here on the forum, I've lots and lots of people like you and I.  Until 2010, I didnt even know there was a possible solution because I didn't know of anyone else who had what we had.  In fact, in the 54 years I dealt with, there was only 2 recordings of it.  The first was in 1957 when at 6 years old, I was rushed to the hospital with a heart rate of 312bpm.  It was converted with digitalis.  Then fast forward 15 years later to 1972 while I was in Deborah Heart hospital trying to get a handle of it, they gave me an early heart catheterization.  The catheter, fished from my right arm,  entered the right atria, touched the heart wall, and it was off to the races.  With blood gushing from my arm, I was able to Valsalva out of it. The diagnosis: SVT of unknown origin.  The prescribed treatment was, and I quote, "Learn to take life easy."  Now I was and still am, a balls to the wall, full smoke kind of guy.  Taking easy wasn't my lifestyle.  And so I coexisted with SVT until 2010 when I got a 30 day loop recorder, and my cardiologist was alarmed when he saw a 60 year old guy with an episode heart rate  of 240 bpm.  So after seeing a couple of electrophysiologists, I selected one, he went in and apparently it was very easy to find and ablate.  54 years of AVRT gone in 5 hours.  So yeah, I know how you feel.  I wouldn't give up on getting it fired.  I might give up on the current team taking care of you.  I'd try somebody and someplace new.  Maybe look outside your area at elecrrophysiology hot spots, University of Penn, The Cleveland Clinic, places like that.  Give them a shot and see what they can do for you.  On the meantime, it may eventually settle down.  I had about a year of short runs of SVT, a dozen beats or so before it disappeared.  Don't give up yet, but plan ahead for your next plan of action. (I'm going to apologize now if you see any typos.  I'm writing on a tiny keyboard on my phone, and this is a lot of text!)

[Vunel]

Thank you, tom_h. I have read and re-read more of your posts than you know. I come to these boards in times of duress and hopelessness to feel less alone. I appreciate your response and I am sorry you have had to deal with this awful condition for so long.

I landed in the ER again Sunday evening with 201 bpm SVT episode. Corrected with Cardizem. I was distraught, to say the least.

I have an appointment on Wednesday. I need answers, and you may well be correct--it may be time to find a new care team. The other factor is time. I suspect at almost 4 weeks out my heart is still quite enlarged and in being so those connections are still easy to make and/or connecting from other tissue that was not active before. I am told this is part of the 'blanking' or 'therapy' period as they expect arrhythmias and other oddities to occur during this time.

I will report back after Wednesday. I am to spend a couple days at home recovering as I have felt absolutely exhausted between the two episodes.

[tom_h]

Yes, please keep his apprised of your situation.  Good luck!

[Vunel]

Hello Tom. My version of AVNRT is complex and required a lot of burns to cover. It is going to be a rather rough recovery. Now that my heart is starting to deswell the connections can be made until the scar tissue forms.

My EP prescribed Flecainide Acetate 50 MG twice a day to help stop the episodes until they have a chance to fully heal.

Ideal outcome is the scar tissue heals and stops the connection. No more meds, surgeries, or random ER trips. Other options may include a third ablation and possible pacemaker. Won't know if those are to come to fruition for another 3-6 months, but if the medication does not work and episodes continue those options will be expedited.

[tom_h]

Flecainide is heavy duty.  I know because my daughter is on it presently for a sudden outbreak of A-fib.  She takes 100mg twice a day.  Yes, your AVNRT is more complex than what my AVRT was.  It was out in the open and not anywhere the A/V node.  But the resultant burns and their effects are the same.

[researcher09]

Sorry to hear that you have had failed ablations for WPW.   You mentioned that you had multiple burns and that they still didn't get the right spot.  It could be that the trigger is located in a hard to get to spot, perhaps the right free wall.  Or perhaps a more experienced and skilled center is required, in either case.  Look for centers that have handled the most complex cases, such as VT ablation or complex AF (as compared to simple PVI ablations).  Best of luck to you.  Let us know your approximate location if you need help searching.

[nancypoffel]

I've had two ablation in the past year. I have had pvc's since high school,  but afib w/rvr is the *****! (240 bpm sent m to er as well). I  know your svt's are different but give it a little time and do it again if you need to. There is a 3-6 month "blanking period" for afib ablation and some people have  lights in the healing process. So even if  you are getting it once in a while time might help. What is your recovery time for svt?
I have taken flecinide which did'nt work for me, I did find it harsh and it is the first arrhythmia eps usually try. I have to take amioderone which has way more side effect for 6 months after ablation. I also take metoprolol succ 24hr(seems to help better than tartrate) and cardizem CD 24hr. Also for afib protection post ablation I am on eliquis. Its been a few months and just started getting little runs of something once in a while but I'm still healing(can't have any alcohol or it triggers, I would suggest the same for you). If it comes back I'm going in again! I will fight until it takes or they can no longer do it. My situation is also super complicated and I wish you the best! Go do it again if you have to, it might take! Good luck-John
P.S. I'm 47

[nancypoffel]

It's the shizz having arrhythmias!!! (Wouldn't let me say the other in my post!)

[nancypoffel]

I a!so meant that I found fleconide not harsh. That's why they try it first. Amioderone and tykosin much worse!