Catheter Ablation for SVT - any success stories as I'm so scared?

[ReggieEve]

Hi, I'm a 32 year old female, diagnosed with SVT in December 2011. I saw an Electrophysiologist in March and he advised that I have a Catheter Ablation due to possibly having AVRNT or a concealed accessory pathway...
I am absolutely dreading it to say the least. I understand that I may be sedated and I have never experienced that before. I don't want to be awake and know what they are doing as the whole thing freaks me out. I am als petrified that something will go wrong. Can anybody share anything that will make me feel a little better? I know I need to have it done as I am living with constant fear of the SVT. Many thanks :-)

[sainty_71]

I think I will be in the same boat here, soon, ReggieEve.  It is a scary thing (something touching my HEART eek!), but it is described as a relatively safe/commonplace procedure from everything I've read.  Can I ask, how did your doctor diagnose the SVT?  Did you do an EP study?  I am still being evaluated, but think it's SVT.  Anyway, only advise I have is to stay off internet and reading the horror stories, focus on the success stories and stay positive.  Imagine life without SVT.  Yay for that!  Good luck to you.

[ReggieEve]

Hi Sainty_71 thank you for your reply. After I had my first child 18months ago my GP referred me to a cardiologist as I was experiencing alot of lightheadedness with a few nasty dizzy spells out of the blue. They couldnt find anything serious and had ECG's done and an Adenosine & Flecainide challenge. My doc then just thought it was anxiety. I was admitted to hospital with the first time where my heart was at 230bpm it was captured by the ambulancemen on ecg, they got me to reduce it by bearing down (vagal exercise). I was prescribed Bisoprolol and referred back to my cardiologist who then prescribed additional flecainide and referred me to an EP. I saw the EP in March and he just said to have an ablation, didnt mention ding a study, I guess they do the 2 together..
I hope you get sorted too and I understand how horrible it all is.
I do try to ignore reading the bad but there's just so many isnt there, Not as many success stories as I would like to see. Im a huge worrier about my health as it is.

[sainty_71]

Hi ReggieEve. Sounds like you ahve a rather definitive diagnosis, so that's good.  It can elude doctors for months/years, postponing treatment options. I am grateful that I had an event 2 days ago that got recorded on my heart monitor.  I'm anxious to hear what the doctor thinks and actually hopeful that it is SVT since there is a solution to the problem if that's the case.  I was diagnosed with POTS last fall but I have never agreed with the diagnosis.  I just can't relate to a lot of the stuff I read about it, or at the least mine is to a much lesser degree.  The SVT fits better, but who knows. I had two events while driviing (tachycardia with near faints), and I obviously can't have that, so I need a solution.  

I'm sure your ablation will go well and you can enjoy good health again with your little one.  I also worry about my health a great deal, so I understand.  I just try to stop myself from thinking about all of the horrible "what ifs" and accept that I have no control over this and that some gift will likely come from it, as is usually the case with any challenge/adversity I've faced in the past. Easier said than done, but I'm trying!

[LivingInHope]

Don't want to steer you wrong, but while I was at the hospital for my tilt table test, there was a lady next to me having an ablation and I believe she was awake for the procedure, though I think they gave her local anesthesia.  It didn't seem like it was a huge deal to her, though I think she had some soreness afterward.  It's been a lot of years since then, and my memory may be faulty.  You might try your post on the cardiac arrhythmia or heart arrhythmia forum- SVT is not considered a form of dysautonomia and there may be more people over there that can give you better information!

[tom_h]

There are a lot of us here on the forum who have undergone successful cardiac ablation.  I had mine done in November 2010 for AVRT, more precisely Circus Movement Tachycardia, a high rate, self sustaining form of SVT.  I had this condition for 54 years or nearly all of my life.  Today I live a normal life free of SVT, and I'm loving it.  I was fully sedated for the entire procedure and remember nothing except scooting from the gurney onto the cath lab table.  I've been sedated menu times over the years for various operations and procedures, and the sedation they use now, often Propofol, is a very pleasant anesthesia, much better than anything I experienced before.  We're always monitoring the forum of you have any questions, and you can read my journals as well as those of Jannie411 for a very thorough and detailed explanation of her ablation procedure.

[tom_h]

Just an additional comment:
The electrophysiology procedure is not without it's risks, but has become quite routine.  During the procedure, you have everyone you'd ever want in there with you in case there was an emergency.  Don't be afraid to question the electrophysiologist on his experience as well as his success record.  Also, leading edge equipment doesn't necessarily mean the best.  My electrophysiologist shuns steerable magnetic catheters in favor of his hand control, and deft touch.

[kcaravelli]

Hi ReggieEve,

I had an SVT ablation about 10 years ago to address my fast heart rate at that time. Ablation procedures have evolved quite a lot since then.  I am now in the final planning stages of an ablation for afib.  I am doing a lot of reading so that I  understand the risks and have some intelligent questions for my doctor. I do not believe in relegating my health to him. I go to him for his expertise...I ownd my health and so should you.
I my current reading it seems that the technology they now use to go in up your Femeral artery is much advanced from just a couple three years ago.

I would say the most important thing to do is be sure you are working the best medical team you can find in your area. Don't just bow to your doctor thinking he is a smart guy. There will be a team that does it. Miine was done by my doctor at that time and his team had done over 160 of them. Ask those kinds of questions. My nurses pointed me to the best heart people in the area.  I left my doctor who was good and went to the best.  In doing that I went from a 30% ejection fraction in my heart to abouot 50% which is pretty close to  normal.  I am telling you that so you can believe in the miracles of medicine and understand that they won't happen by accident.

[Karynecpa]

Hi ReggieEve,  
I just had my ablation done last Thursday.  I must say I got myself all worked up over nothing.  For me, the worst part was having my needle thing (where they put IV meds) removed upon discharge as they removed my arm hair with it!  I don't remember much about the procedure itself....the sedation they gave me put me out for almost all of it.  I only woke up when they triggered the SVT but it was only for a short time.  I did not feel the catheters going in, the ablation or even the numbing needles before the catheters.  When I did wake up, I had some horrible shakes, shivering but they put something in my IV and then I instantly felt better.  The other part that wasn't pleasant was laying flat on my back for 4 hours afterward but again, they gave me meds to tolerate the back pain.  So here I am, at home, 4 days later and am just a little sore in the groin and my arm where the needle was, walking slowly but mobile, I take the stairs slowly and I'm limited on what I can lift for a week but other than that, I feel fine.  Bored in fact, because I'm used to always being busy.   The other thing I want to mention is to make sure you have a doctor who is very experienced with this and don't be afraid to get a second opinion.  I did and ended up at Penn with one of top docs in the world.  You'll be fine, I'm a complete baby when it comes to pain and I found it to be nearly painless....except for the arm needle getting removed.  Next time I get anything done (which is this Friday, unfortunately...getting thyroid removed), I'm shaving my arm!  Good luck and let me know if you have any questions while this is all still fresh in my mind :)

[tom_h]

Just to add to Karynecpa's post.  I too had mine done on a Thursday, and was back to work the following Tuesday, then drove 250 miles Thursday morning (US Thanksgiving Day) to visit our kids in the Philadelphia area.  You will be back on your feet the day of the procedure, and literally up and walking around the next day.  Maybe sore,m but you'll be walking around without any aid. I slept in a downstairs bedroom the first and second night before taking the stairs to shower, get dressed, and rejoin the world again.  WIthin two weeks, I was taking easy laps at the rink. After one month recovery, I wasn't back at 100%, but I was pushing as hard as I could with whatever I had to give at the time.  If you're in good shape, you'll pop back fast.

[littlegreenman1]

OK. Here's the deal. What %-age did your doc give you for success??

95%, 85%?????????
If it's somewhere in those lands - then be 95% or 85% freaking PUMPED AND EXCITED AND READY like you're 7 years old and Christmas is around the corner.

I had mine done in July 2010. Not a blip of SVT since. I just PR'd a full marathon this past weekend.

Ablation works for AVNRT. Or whatever brand of SVT you have. It's really stinking expensive, so don't squander this gift of heart rhythm. Git 'er done and a couple weeks later... hit the gym and LIVE!!

[ReggieEve]

Thanks again, i'm sorry to hear you are having a rough time with yours. Hope that they can diagnose something for you soon and get you right. Horrible not having control over these things isn't it.
I'm on countdown 23 days :-(

[ReggieEve]

Thank you for your response, i'm still getting the hang of it on here sorry if I'm posting like a geek! I'm starting to feel a little easier (microscopic amount haha) i tend to focus on thee worst case scenario, the small risk of things going wrong like needing a pacemaker fitted. Bit silly i know. But the centre that i am going to for my ablation, the Queen Elizabeth in Birmingham, sounds as though it has a very experienced team there, I believe they do around 800 per year.
I hope that i bounce back as quickly as you, i am not as fit as i was before i had my son. I used to do circuit training and spin classes but i am too afraid to do anything that raises my heart rate in fear of having an episode or getting these weird skips in my chest. (can you tell i am a complete wuss?).
I will have a read of Jannies walk through of ablation, hope it doesnt scare me though :-)
Thanks again

[ReggieEve]

Wow 4 days ago, hope you are feeling well. Did you have an AVNRT? Did they tell you afterwards how it went? I am one of these who needs to know everything, though wish I could accept ignorance is bliss. I am mainly afraid of panicking on the table i guess. And of course having an episode of SVT is pretty scary (ive only had one bad one touch wood) so afraid of feeling that way again.
I have read that some people are getting PVCs and PACs (are these ectopics?) in the recovery period and whilst the heart tissue mends itself. Did your EP say that was the case to you? I get ectopics quite alot and I hate them. Sorry to post alot of questions.

[ReggieEve]

Your post made me chuckle. Yes my consultant said 90% curative i think. But I am a worrywort. Mainly when it comes to the heart.

I believe I am weaker than everyone thats had it done... Wish I could just be a strong tough cookie and not worry.

I will try and find some positive mental attitude you have inspired me haha..

[ReggieEve]

Hi Kcaravelli thanks for your comment. I had 2 options of where to go on the NHS, one that is really close to where i live, relatively new centre approx 2 years old. Or go to the Queen Elizabeth in Biringham where they have around 60 years experience between the team, one of the consultants i believe he did some of the first RF ablations in the UK. Hope he is around on the day :-)
I'm pleased to hear that you are cured of your svt thats great.
Thanks again

[Karynecpa]

Hi ReggieEve,  yes I had AVNRT and I was told that the ablation was successful. Don't worry, you won't panic on the table, the meds they give to you really relax you so no panicking.  And yes, I am the queen of panic so I can speak first hand. They have to bring on the SVT in order to find it to ablate it but I only felt it momentarily and then I was "out" again.  I was told that I could expect some missed beats or short tacky runs as I heal but these have not been bad at all.  I also stopped my beta blocker so I am no longer on a medicine so my body needs time to adjust.  Bottom line, I would definitely do it again, definitely worth it.  I am counting the days when I can start working out again. Just have thyroid surgery to get through on Friday and then I'm golden :). Feel free to keep the questions coming... I am home this week and taking it easy which means lots of time on my iPad.  Take care, Karyne

[tom_h]

I got a syringe of Vallium before being rolled away from my short stay cube.  It took about a minute to hit, and I was barely able to scoot onto the cath lab table.  At that point, I couldn't care what they did to me.  I was out for nearly 5 hours, but woke up quickly and refreshed in the recovery (love the new drugs) and was alert and eating a chicken salad sandwich 60 minutes later back in my cube.  The only thing I didn't like like was the Foley catheter they stuck in my while I was asleep.  When I woke up, I was like, "Whattt the......!!  It felt like a garden hose being pulled out of me when it was removed later in the day.  For the next two days, I had the "silent scream" everytime I went to pee.  That was more painful than recovering from the procedure itself.

[Jannie411]

Hi......please feel free to read all my journal entries at Jannie411.  I've documented the entire  journey from a few weeks before the ablation, including details on the procedure, and weekly, monthly, and yearly updates.  There's some background history at the beginning of the journals too.  It's been a little over a year now since my ablation and as I go back and read the journal entries, it's amazing to see the difference in my quality of life between last March and now.  I was a little bit apprehensive at first about getting it done, but couldn't bear the thought of continued SVT episodes, which became worse and worse over time.  I am so glad I had it done, no regrets.  I wish you the very best.  Please keep me posted on how you're doing.

[barbie1999]

hi
I had an ablation about 6 weeks ago. Like you, I was so stressed and scared about th eprocedure. But I shouldn't have worried so much. It was absolutely fine, I was awake but away with the fairies! No pain and time went by quickly.
My recovery took a bit longer than I had expected. I was pretty tired for 2 days and with a very jumpy heart but it all settled down and was feeling myself within a week. ^ weeks on and I'm completely back to normal. Good luck

[lotus8]

Did you recover at home or in the hospital? Is it a recovery where you can hardly get out of bed or just one where you need to lay low and recoup your energy?

[tom_h]

lotus8, Barbie1999 has not been on the forum for many years.  You should ask your question in a new post to get fresh answers.  But personally, my recovery took about 4 days of taking it easy before returning to work.  I had it done on a Thursday, and went back to work Tuesday.  I'd say that I was near 100% in about 6 weeks   but drove and did light exercise in a week.

[ReggieEve]

Hi Jannie411 I've read your posts about the actual procedure. Wow you were brave wanting to be awake. It was very useful reading this. Was you afraid though beforehand? I guess I am lucky that I havent endured ears and years of SVT, but if I don't have the ablation maybe the SVT will progress and trouble me more. I am definately more anxious since my 1st bad episode.
I will keep you posted, I have had confirmation today that it is definately going ahead, my EP has a shoulder operation himself the next day!
Thanks for your kind and helpful words.

[ReggieEve]

Hi Karynecpa, I hope that your op today went well. I have so many questions but will leave you to recover from your thyroid op. A lady at work had that same op last month. Speedy recovery to you and will talk to you again hopefully :-)

[ReggieEve]

Thankyou Barbie1999 good to hear these success stories. I just hope the meds zonk me out so that I dont panic as i have become quite a panicker about my heart. Hope that you continue to recover and be SVT free :-)

[Jannie411]

Hi ReggieEve.
I was a little bit apprehensive, but what I was really afraid of was what would happen to me if I didn't have the ablation done.  My episodes had been getting more and more frequent and severe over the years, to the point where my medication was no longer working.  The last episode that landed me in the ambulance and the emergency room was the worst ever and I swore I was never going to go through that again.  I had reached the point where I felt I had nothing to lose.  My EP gave odds of success in the 90% range.  Glad I listened to him, wish I had found him sooner.
I hope your procedure goes well and wish you a speedy and uneventful recovery.  Please don't hesitate to contact me by message if you need to talk.  

[MichelleP_3811]

I see you have gotten a lot of good responses but I will add that I had probably the most successful ablation ever.  I was in and out in 2 hours and have not had an episode since (last september).  I was terrified to do the ablation but was almost kicking myself for being so stressed about it because it really is a piece of cake for the patient.  I felt a little uncomfortable while they paced my heart and the ablation part did hurt a bit but for the most part it is basically like going in and having an IV put in.  I had 2 full on abdominal surgeries and the ablation was nothing compared to them.  It did take a good 6 months for my heart to finally feel calm, I am in my 40s and was pretty active prior to the ablation so my heart was probably pretty stressed out at the time.  But even with the long recovery to get back to normal the physical toll abdominal surgery had on me was much harder to recover from than the ablation.  

I had avnrt as well.  It is actually one of the easiest ones to fix so chances are good they will find your spot and be able to ablate.  They have to tell you about possible complications but if you really think about it, 1% is extremely small so the odds are you will not need a pacemaker.  More than likely they will stop and leave you with the svt before they do anything to cause you to need a pacemaker.  But odds are you will come out cured.

That said, I did have a lot of ectopic activity after my ablation.  I was actually a bit peeved at my doctor for not forewarning me about them though I am not sure they knew I had them but I did ask about a fluttering feeling and they just blew me off so I was a bit taken by surprise by them.  I felt them prior to the ablation but thought they were related to the svt but I also don't recall feeling them to the extent I was feeling afterwards.  They actually made me very sick for a time.  But now 7 months out the ectopics are almost unnoticable.  I still can feel them especially on stressed days but they aren't as intense as they were.  I believe that the stress of going through the ablation and simply years of having fast beat episodes likely stressed out my heart and as such I was having and feeling more ectopics but as the heart heals your body will adjust.  You will likely not totally get rid of the ectopics but you should eventually stop noticing them as intensely, at least that is what is happening with me.  I did initially blame the ablation on all my ectopics but I can see now that it is possible I was having a lot of them prior but just didn't feel them and now that my heart is resting from years of tachycardia I am not noticing my heart as much as I had for a while.  So be prepared to continue to have the ectopics (ectopics are one of the biggest triggers for avnrt) but also take heart that with a bit of time and distance your heart will be much better for having done the ablation and with a little time and rest you too may stop noticing your heart so much.  Though it sounds like you already know what to expect if you are interested in reading about my ablation you can click on my name and read my journal entry .   Take care and let us know when you are scheduled.  I will send good thoughts your way.