My ablation experience : Hi everyone, I... - Heart Rhythm Diso...

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My ablation experience

Goalnsr profile image
57 Replies

Hi everyone,

I wanted to share my recent ablation experience as I know there are others who have upcoming procedures and still others who are deciding whether or not to go the ablation route to address their arrhythmias. Since I found the experiences of others helpful in my own decision making and coping process, I wanted to share mine as well.

To start, my arrhythmias were svt and frequent ventricular ectopics. I was diagnosed fairly recently, in August of last year (2018). However, my svt was not definitively diagnosed until after my EP study, as atypical AVNRT.

I was started on Metoprolol but due to having baseline low blood pressure, I could not tolerate even a low 12.5 mg dose. I was then started on Diltiazem 30 mg quick release, which I took 3 times a day, but it only helped for about an hour after taking it, after which my forceful ectopics would return and it did little at all to manage my svt.

I had svt that occurred throughout the day - very short runs, for the most part, anywhere from a few seconds to 10 minutes or so. I found them less troublesome than the constant ectopics that occurred in a bigeminal or trigeminal pattern and would be so forceful that if you were sitting in the sofa with me, you could feel the reverberations through the back cushions.

I decided to have the EP study to determine exactly what kind of svt I had and, if possible, to ablate it. I also made the decision to ablate the PVCs, as they bothered me so much. My EP warned me that because the PVCs were on the left side of my heart, he may not be able to reach them. He also warned that because svt can be hard to catch, he may not see it during the EP study; therefore, there were no guarantees going in that he’d be able to ablate anything. I was not having much relief with medication and at age 52 with an active lifestyle, I did not want to start down the road of medication after medication, knowing full well that the medications typically stop being effective after a period of time and the arrhythmias become more refractive to ablation the longer they continue. I did not enter my decision lightly - I am terribly anxious about any surgery and certainly any kind of heart procedure was very difficult to come to terms with. However, my EP assured me that if I changed my mind, I could cancel right up to the last minute and that if I did go forward with it, my safety was his utmost priority and he would not ablate anything without being absolutely certain he could do so safely and successfully.

I had to wait almost 3 months for the scheduled ablation. I made the appointment in December and it was set for February 15. I did my best to put it out of my mind and just tried to enjoy this time as much as I could, knowing that the week leading up to it would be time enough to fret and worry.

But then, I had a follow up with my regular cardiologist who suggested giving the medication more time, maybe a few months, and if I wasn’t better, then I could reschedule the procedure later in 2019. This seemed reasonable so I called my EP and told him I was going to stay on the medication a bit longer and see how it went . I only did this because my cardiologist indicated that he would try to wean me off in a few months and that maybe I’d be improved enough that the procedure would not be necessary. I wasn’t really sure about this, as I knew that svt tends to progress rather than go away, but anything that allowed me to avoid surgery was worth it to me.

Well, it was as if the heavens intervened and sent me a sign - just a week after deciding to forego the procedure, I had the worst svt episode of my life and was rushed by ambulance to the emergency room where they tried for several hours to bring my heart rate down. It was the most terrifying experience of my life. The paramedics that brought me to the hospital were all very caring and comforting, but they all said, “unless you want to live like this, never knowing when svt will hit, you might want to reconsider having the procedure.” I agreed. If I could’ve had it that day, I would’ve gladly walked straight into the operating room without hesitation. So I called my EP and was back on for a February 15 EP study and attempted ablation.

I was quite anxious the night before and took 1/2 mg Ativan to help calm my nerves. We woke at 4 am, and I arrived at 6am for preparation of my 8 am procedure. I was allowed to have clear liquids up until 6 am so I took another 1/2 mg Ativan (with the prior permission of my EP), and this helped as well. They prepped me - (bloodwork, groin shaving, IV placement) and then the team stopped by to chat with me. I had my EP, an EP Fellow who would be assisting, a nurse and two anesthesiologists. Although I would be under conscious sedation and not GA, they had anesthesiologists present in case they needed to convert to GA.

They wheeled me into surgery at 8:15 am and started something in my iv just before I kissed my husband goodbye, they said it was like “truth serum” to which I replied, “ I hope I don’t say anything embarrassing!” I felt very calm, not drugged or “out of it.” They moved me onto the procedure table, I laid down, and then, I was out. I came to with no idea how long I’d been out, and they were in the middle of the mapping portion of the study. I chatted with them for a few minutes and felt absolutely no pain whatsoever. After a while, they told me I needed to be quiet so they could concentrate, which I thought was rather amusing. Then, I was out again. I came to at some point, looked around, and then could feel my heart beating a little fast (not scary fast, not like I had felt during previous episodes), and I said, “I can feel my heart beating fast.” They told me it was the adrenaline doing it’s job, the anesthesiologist came over and smiled at me, and I was out again.

I came to again and could feel some kind of sensation in my chest, not burning, not pain, just a little warm movement. I told them what I was feeling, and then I was back out. I was never afraid, uncomfortable, or in any distress whatsoever.

When I next woke up (I later learned it was a 5 hour procedure), they were removing the catheters and I remember saying “ow” when they removed the sheaths from my groin. They wheeled me to recovery where I laid flat for 6 hours, I slept for some of it, and complained that my back felt stiff but overall, it was easy. I mean EASY.

My EP eventually came by and told me then that I had atypical AVNRT with a 95-98% chance it would not recur. He also got the ectopics and there was about an 80% chance they’d not recur. I was elated. I could not believe how GOOD I felt. The constant sense of movement in my chest was gone. I stayed overnight, and other than my blood pressure dropping a little low (80/40), I felt fine. I cried tears of relief and gratitude. I was so glad that I overcame my fear and doubts, and had the procedure. Other than my back being a little stiff, I had not felt this good in a very long time.

It’s now 5 days later and I still feel great. I’ve taken two weeks off from work even though I know I could go back sooner. My work as a lawyer is stressful so I felt the extra time off would do my heart good. I’ve napped, watched movies, and read some books I’ve been meaning to get around to reading. I’ve said a lot of “Thank You’s” and even though I’m not religious, I’ve meditated quite a bit on how fortunate I am.

I have felt a few brief flutters, but very very brief, and I’ve had some achiness at times over the left chest but nothing I’ve needed to take ibuprofen for. My groin is a bit sore but nothing really bothersome. I’ve gone for a few short walks and tonight I made a big pot of black bean soup to enjoy tomorrow, as we are getting some snow tonight here in the northeast US.

I know how lucky I am. I know everyone’s situation is different. But I wanted to share my story because I really did not expect the procedure to be as pleasant as it was. I expected some degree of discomfort and I had none. I even had to be cardioverted on the table but did not even realize this until I asked about the horse shoe shaped burn on my chest! To be honest, that is the thing that made me a bit sad, to know that they “shocked” my heart at one point. But I was assured that it was a low voltage shock and was not the “violent” shock I envisioned in my mind. Rather, it was like a small “nudge” to get me back into rhythm.

I see my EP in a couple weeks for a follow up. I’m off all meds (yippee!) except aspirin.

Of course, I know either or both of my arrhythmias could come back, despite the favorable odds. But I know now that there is NOTHING to fear from the ablation. If I need it again, I will gladly do it. The expert care of every single person I encountered at the hospital and being in the hands of an experienced EP made this THE best decision I’ve ever made about my health.

I would urge anyone facing this decision to ask lots of questions and if you don’t feel you’re getting enough answers, seek a second, third or even fourth opinion. I had a second opinion and it definitely helped me to know I was taking the right path for me. Each person must travel their own path and not all will choose ablation. However, please take heart that if fear of the procedure itself is holding you back, you can rest assured that it is not difficult to endure AT ALL. Being able to set that fear aside will allow you to consider all the pro’s and con’s of your particular situation and make the choice that’s right for you, without fear driving you away from something that will likely improve both your heart function and the quality of your life.

I wish you all the best in your journeys.

With a happy and grateful heart.

Kelly

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Goalnsr profile image
Goalnsr
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57 Replies

So helpful to have a long and detailed account, both of your decision to go ahead and of the procedure itself. I hope it will assist those who are considering ablation.

Great that you are feeling so good too! Long may this last.

There are currently five 'likes' to this long and interesting post.

Has anyone a comment to make?

bantam12 profile image
bantam12

Should any of us find ourselves heading down that road It's very useful to have others experiences to look back on, good or bad it's best to be informed and your post will I'm sure put people's mind at rest pre treatment.

I wish you well x

avma profile image
avma

Thank you for sharing your story. 🥰

I too have been diagnosed with AVNRT. I will be having ablation shortly. I’m 54. May I ask, you talk about the short runs of svt you had been having. Did they your heart rate get very high everytime and how high? I ask this because when I’m walking (just walking) my heart rate will go up very quickly, so because I’m scared that it will go up too high I stop walking and it comes down very fast. I didn’t had that before my major crisis of 2 hours of heart beats of 210. It is just since I had that crisis, that my heart rate goes up every time. So I’m wondering if this is due to my AVNRT?

Goalnsr profile image
Goalnsr in reply to avma

Hi avma,

My heart rate would go up with very little provocation- climbing the stairs in my house, doing laundry, drying my hair. It would go anywhere from 150 to 200, sometimes higher.

I also work out and would curiously not have spikes during cardio work, but immediately after, or during recovery periods between sets of squats or lunges, it would jump to 180s, 190s, and occasionally over 200. My EP told me that some people see a normalization of their HR with sustained aerobic activity, but spikes with short bursts of increased load (such as walking, stairs, mild activity, etc) and when the heart is recovering from activity. I definitely experienced both. I was told in my case it was the AVNRT, but again, they could not be positive that I didn’t have other arrhythmias until the EP study.

avma profile image
avma in reply to Goalnsr

I recognise this. My heart rate will climb fast after an activity such as climbing stairs or walking, but I also get a little out of breath, it’s because I get the slighthly-out-of-breath feeling, that I know that my heart rate will climb immediately afterwards. Somethimes I get a really hard skipped beat and then I know that my heart rate will drop again soon after. It’s also true that when I am doing a little workout on my cross trainer my heart rate will be very ‘normal’ in function of the exercise that I’m doing. Someone told me that this is a circular movement and not the same as walking or climbing stairs...

I find it somethimes strange that all this “heart things” can be provoked by a false circuit in the heart.

The problem is that since I have this problem that I’m really focused on it. I keep very calm because I’m afraid my heart could go to 200 again and that I have to go to the hospital again to get it back into sinus rhythm :-(.

I hope the ablation will solve my problem and on the other hand I’m very anxious for the ablation itself so somethimes out of the blue it hits me bang! I feel the stress in my throat and stomach and then I want to cry and shout but...that’s not good for the heart pfff...

Goalnsr profile image
Goalnsr in reply to avma

Ohh, I so understand your fear and apprehension. I really do. I would also get the hard skipped beat before going back to a normal rhythm.

I hope you feel at least somewhat relieved to know that the ablation is not a scary or painful experience. Be sure to tell everyone who comes by to see you before they take you in that you are nervous. I did, and they made sure I was very comfortable and not the least bit anxious.

I know you are going to feel so much better once this is behind you. Living with the constant anxiety of when it will happen again is a terrible weight to carry around. You will feel so relieved and so much better, and spring is coming, with the earth returning to warmth...the birds, flowers and fresh air will be like a new beginning for you.

I can’t wait to hear how you are doing. I’ll be thinking of you and sending positive energy to you!

avma profile image
avma in reply to Goalnsr

Thank you for your so very kind words. It almost makes me cry. Today I was cooking and stirring in my pan and bang! there goes my heart rate to 150 bpm and I don’t even notice, it was just coincidence that I looked at my watch. But perhaps my watch was playing me tricks because it was above the cooker?

It’s indeed very frustrating and frightening every single time.

I will certainly keep your words in mind about the new life that is beginning :-). I’m also getting married two weeks after my procedure (March 14th ablation and March 30th marriage) so it’s really a new beginning of a new, hopefully healthy life.

At the hospital I will remember your words and tell them how anxious and afraid I’m so that they surely give me some happy drug and drug for the pain.

I hope that they can give it to me because I sometimes snore at night and I read somewhere that this could be an obstacle to give some sedative because it could be unsafe for your breathing during the procedure...

avma profile image
avma in reply to Goalnsr

Ps: I didn’t know that one can be treated for PVC’s on itself? I thought you could only get treated for arrhythmia and that the PVC’s were a side effect?

Goalnsr profile image
Goalnsr in reply to avma

My PVC burden was very high (every other beat or every third beat) and they were constant, which placed me at risk for developing cardiomyopathy. They were not a side effect of my svt, but they did sometimes precede an episode. I actually had the PVCs years before I ever had an SVT episode. Because of the high burden, I was going to need to address them eventually; so it made sense to do it in one procedure.

TinCool profile image
TinCool

Thanks for sharing your experiences. I enjoyed reading it and am happy for you that it has made such a massive difference to your quality of life. If ever I have the same decision to make as yours I will remember your post.

kingsnorth profile image
kingsnorth

I’m so pleased worked out well and thanks for sharing your experience. Can you tell me what Svt feels like. I was diagnosed with ectopic heartbeat several years ago but recently it’s been getting worse. It sometimes actually hurts when it happens and the jump is at the top of my chest. I need to go back to consultant for possibly meds.

Goalnsr profile image
Goalnsr in reply to kingsnorth

When svt would occur, I would feel a sensation of a “zip” or something like effervescence- like tiny bubbles rushing up in my chest. Then my heart rate would immediately begin to race in a very regular pattern. Sometimes, I could count it at my wrist, but if it was very high, I would not even be able to feel a pulse at all. I would also feel a sense of pressure or expansion from my chest up to my throat. I never knew what that was. But now I know it is one of the telltale symptoms of svt!

I know how maddening the ectopics can be. I had them constantly and they would be quite strong. I hope you have some relief soon! I did find that beta blockers worked well to dampen them but I could not stay on them due to having low blood pressure.

MydogBrandy profile image
MydogBrandy

Hi , I agree, I had my ablation on 3rd jan and just had my follow up. I agree, I had svt for 18 years but suddenly they came with a vengeance and lasted upto 2 hours and had to go to hospital 7 times in 3 months. Enough was enough I thought and I was scared but went ahead, est thing I have ever done. Saw the cardiologist on Tuesday and hugged him telling him he had given me my life back. I can now go out without the worry of it happening. I have been taken off ALL my meds now. The last ones were the blood thinners. Feels really strange not taking tablets twice a day.

Hope other readers on this site will be as lucky as we have been

Love to all,

Ursula

avma profile image
avma in reply to MydogBrandy

What was your condition?

MydogBrandy profile image
MydogBrandy in reply to avma

Hi, svt is what I was having very frequently. Even putting eye make up on, eyemovement, looking up on the top shelf when shopping, certain head and neck movements, or getting up quickly would just send me into one. I then had to lie down flat wherever I was drink loads of ice cold water to try and shock my heart back to normal, if this didn’t work I want to A/E. The cardiologist told me it was a circuit that misfired after a missed heart beat. He explained that a lot of people have a missed beat and have no problems but mine started the. Irvuit to go wrong and sent me into svt. Hope this helps, regards Ursula x

avma profile image
avma in reply to MydogBrandy

Thx Ursula!

It’s indeed very frustrating and gives a lot of anxiety. Did you have AVNRT, AVRT or WPW? And did you also get treated at the same the time for the PVC’s (like Kelly did) or just for the condition you had?

MydogBrandy profile image
MydogBrandy in reply to avma

Sorry I just know it was svt and my heart used to go up to nearly 200 for no reason, sometimes 10 mins, usually 2 hours and even 12 hours at its worst. My cardiologist was lovely and just explained that I had a naughty circuit . He said whilst I was under he set me off, found it sorted it, tried to set me off again a few times but couldn’t this telling him it worked. Crikey I think it’s unbelievanle how clever these guys are🤗x

avma profile image
avma in reply to MydogBrandy

You say: “I was under” Did you get GA then or sedation?

MydogBrandy profile image
MydogBrandy in reply to avma

Hi, GA , I couldn’t hav3 had it done without that, I am such a wimp. Even a clean at the dentist upsets me.

avma profile image
avma in reply to MydogBrandy

You’re lucky, my EP says I can’t have GA because then he cannot trigger an episode of svt, but I’m also a wimp huh.

MydogBrandy profile image
MydogBrandy in reply to avma

Can’t trigger an episode under GA? My cardiologist did it for me, where are you in the country?

avma profile image
avma in reply to MydogBrandy

He thinks I have AVNRT and this sort arrhythmia, he says, is difficult to trigger when under GA. He says he also wants me to tell him at the moment that he triggers it, that that is the arrhythmia that I have been feeling. I live in Europe (Belgium). I find it a bit confusing that one arrhythmia can be found when you are completely out of it and others that you have to be aware in a sort of way so you can communicate during the procedure...I would assume that every Svt can be found in the same manner?

Goalnsr profile image
Goalnsr in reply to avma

Just remember, even though it’s not GA, you will be “out” for some of it and during the rest, you’ll be VERY relaxed and comfortable :)

avma profile image
avma in reply to Goalnsr

Hey Kelly,

I really hope so :-).

Can I ask you: During your procedure could you response to questions asked about what you felt when they were triggering the svt even when sedated? How do I have to imagine me what this feels like?

Goalnsr profile image
Goalnsr in reply to avma

Yes, I could respond. I felt very clear headed, just super relaxed. There is no pain. You may feel your heart beating fast or some sensations in your chest, but it’s not painful. I actually became so chatty at one point that they told me to be quiet 😄

avma profile image
avma in reply to Goalnsr

Oh that’s nice :-). And your AVNRT still set off while you were so relaxed that they could catch it?

MydogBrandy profile image
MydogBrandy in reply to avma

Really? I can’t understand it either sorry. I live in the north of England and had mine done in Leeds. Wishing you all the best on whatever you decide though x

Goalnsr profile image
Goalnsr in reply to MydogBrandy

Ursula,

What wonderful news!! I agree, it feels like a new lease on life! It does feel strange not to be taking my medication three times a day! The best part is not living in fear of when it will happen again. I have my joy back and I’m SO glad you do as well.

MydogBrandy profile image
MydogBrandy in reply to Goalnsr

🤗😁so agree xxx

Avrnt profile image
Avrnt in reply to MydogBrandy

Indeed ! I do have to say as a former Cardiology ward sister in the UK I did my homework on the Consultant . Dr Edward Rowland . Dr Rowland is world renowned for his prescision . My local hospital did not fill me with confidence - a procedure requiring such skill

Have a great weekend !

Avrnt profile image
Avrnt

Fantastic ! I went through the same after a lifetime of AVRNT and ablated at 52 I’m now 59 and please God no more SVT ! It’s such a scary condition ! I’m still on verapamil twice daily and happy ! Thank you for your comprehensive run down of events ! Ablation all the way !

Goalnsr profile image
Goalnsr in reply to Avrnt

Knowing that you have enjoyed 7 years without SVT is fantastic!!!! Here is to many many more 🙂

MydogBrandy profile image
MydogBrandy in reply to Avrnt

So pleased for you, I was in my early fifties when I started with my condition and kept refusing ablation because I was too scared. If only I had known.....

Wasted all those years of being without svt controlling my life. I am now 70 and going to start living again. Just got to get my hubby sorted, he is still recovering after having his kidney out and then has to have another stent. Hopin 2019 is going to be a better year for us. We ere both in CCU in opposite beds 4 months ago. X

Avrnt profile image
Avrnt in reply to MydogBrandy

And lots of luck and blessings for your husband x

MydogBrandy profile image
MydogBrandy in reply to Avrnt

Thanks so much😘

Goalnsr profile image
Goalnsr in reply to MydogBrandy

Good thoughts to your husband and here is to a healthier and happier 2019!

avma profile image
avma in reply to Avrnt

Hey,

May I ask why you’re still on meds whilst your ablation was a success or did I understand it wrong?

Avrnt profile image
Avrnt in reply to avma

Good question . I was a severe case of AVRNT so they decided to Keep me on verapamil . I guess it can reoccur ( heaven forbid) . I was discharged from hospital following the procedure and so far so good x

avma profile image
avma in reply to Avrnt

I don’t understand. I thought that if they find the arrhythmia and can ablate it, it’s cured no?

Avrnt profile image
Avrnt in reply to avma

Apparently not

I must attend the next conference on my area - I thought the whole purpose of ablation was to be med free but no it’s not as my Gp said it can return 🙄

avma profile image
avma in reply to Avrnt

I understand, It can but it also can stay away. And if it returns you can get a new ablation...? But until then, it seems to me that staying on medication if it is gone now is a strange decision of the Gp isn’t it? And what does your EP thinks of this, isn’t he the specialist in this matter? What would the Gp say if you couldn’t support the meds?

take my case: I don’t support the beta blocker meds, so I really don’t have a choice than getting an ablation. My EP didn’t even want to get me on meds, he didn’t even let me choose but went straight for the choice of ablation. I think IF one day it should return I’ll have a second ablation... Is that not a possibility for you in case it does? The EP also told me that AVNRT is the arrhythmia that has the highest chance of not coming back after ablation.

Avrnt profile image
Avrnt in reply to avma

Ep decision (of London Heart Hospital UCL)

Gp almost pleased to tell me so I replied well if that’s the case no way are you ever getting me off diazepam

Goalnsr profile image
Goalnsr in reply to avma

I’m off all meds since the day of my ablation 🙂 I have to take 325 mg of aspirin daily for two weeks, then 81 mg after that (and I’m assuming forever, although I’m not sure). The increased aspirin for two weeks is because they had to go through an artery to the left side of the heart for the PVC ablation, which has an increased risk of stroke.

kingsnorth profile image
kingsnorth

Thank you everybody for your information. I don’t get a fast heart rate just l say just!! A kind of thud that hurts in my upper chest near my throat

Goalnsr profile image
Goalnsr in reply to kingsnorth

I think any symptom that causes some degree of discomfort warrants investigation. Plus, just knowing that you are proactively addressing it will make you feel better because having any kind of heart condition can make you feel like you have no control over your life. Knowledge is power!

Avrnt profile image
Avrnt in reply to kingsnorth

Yeah those thuds do hurt but it’s disconcerting sometimes after a bout of svt I’d feel achey in the chest

Such a vile thing to have isn’t it ? People who don’t have it don’t understand how horrible it is and the fear that goes with it

kingsnorth profile image
kingsnorth in reply to Avrnt

What does svt actually stand for and is it dangerous

Goalnsr profile image
Goalnsr in reply to kingsnorth

Supraventricular tachycardia (meaning, a tachycardia that occurs above the ventricles).

Goalnsr profile image
Goalnsr in reply to Avrnt

No they don’t! They have no idea. They think because it’s not immediately life threatening that we should just be ok with it. They’ll never understand unless they go through it themselves.

Avrnt profile image
Avrnt in reply to Goalnsr

So true , no not life threatening but I’ve over the years been treated very badly by medics who simply did not believe me . Disgusting thankfully we now have recording devices which are readily available

kingsnorth profile image
kingsnorth

Thanks

bidwell profile image
bidwell

Kelly, thank you so much for taking the time to write a detailed account. I've had occasional afib for about 9 years...taking Toprol and Eliquis for it. Afib has recently progressed to 24/7, now in third week, and I have an appointment to see an expert EP in 5 days. My regular cardio guy just wants me to take ever more potent meds...amiodarone....but I want to get to the root of the matter and not just dampen down the symptoms. So your post has given me the courage to go forward and that is a great gift.

Profound thanks to you.

Maryellen

Goalnsr profile image
Goalnsr

Maryellen,

I’m so glad my post was beneficial to read. I wish you all the best!!

VeeWat profile image
VeeWat in reply to Goalnsr

Who did your ablation?

Coco51 profile image
Coco51

Thank you for describing your experience so clearly, honestly and carefully. Your post is pure gold! It helps so much to read this type of information. I have had 2 ablations for AF but I still get bursts from time to time, and could well push for a third. Trouble is I had a very bad reaction to the last GA so it may not be possible. But thank you again.

Eirecara profile image
Eirecara

Thank you for taking the time to share your experience in detail. Best wishes ☘️

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