Catheter Ablation for SVT - any success stories as I'm so scared?
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 :-)
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.
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.
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!
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!
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.
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.
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.
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 :)
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.
OK. Here's the deal. What %-age did your doc give you for success??
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!!
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 :-(
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 :-)
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.
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.
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
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.
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.
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
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.
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 :-)
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 :-)
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.
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.
Thankyou Michelle, hope mine is a 2 hour procedure like yours. I have my pre-op on the 18th May so will ask them about ectopics. Did you have any medication to help with them? Mine havent been so bad since taking Flecainide. I think thats what they were anyway where i'd feel something funny in my chest then it was as though the air gets sucked from my throat and chest. Horrible feeling. Ive always tried not to read on forums but this one has been pretty useful.
No I haven't taken anything for any of my heart issues. My doctors aren't big on meds though I was told they would prescribe beta blockers if my pvcs did not get better but they did so there is no need. I can't say that I enjoy the ectopics. I will have some that occasionally take my breath away and I will get headaches and feel tired on days that I am having a lot of them but for the most part they are more of a bother than making me really sick so I mostly just try to ignore them. Well best of luck. I will keep you in my thoughts.
I just had ablation two days ago (Jan.10th, 2012). I have had SVT since I can recall and I'm 37 now. I have never had surgery before so believe me this was a huge decision and it took me years to make this decision. I suffered with many episodes, multiple times a month for years. Even driving once I had to pull over and call an ambulance to the road side because I was neary passing out and i couldn't get it to normal rhythm which normally I bare down and it works. Last straw was April as I was running a ten km race, I was the cliché who had to be taken to the hospital because again it wouldn't go back to normal. This time I had Adenosine and it didn't work, and I was 5 minutes away from being shocked with the paddles but it went back to normal all of a sudden. It was then that I decided no more!! I was freaking out to say the last, very scared, I was fearing the worst. And you know what? It was all petty much for nothing. I was awake the whole procedure but very sedated, not out if control but felt very relaxed. I watched the catheters go into my heart on the monitors, it was very cool actually. Time flies by. All of a sudden it was over and it took about 4 hours. Didn't seem like it. I even drifted off to sleep during the procedure. My issue turned out to be on the left side of the heart so she had to make a hole in the heart wall to ablate the extra partway so risk of Stoke is there but what can you do? I am so glad it's over and I have never felt my hearty so quiet, its very strange and will take some getting used to. My groin is a bit sore but just slightly, its not much worse than a sore bruise with a bit of stiffness. I stayed over night in the hospital with a IV of blood thinner, and I have to take baby aspirin for three months. That's it! It isn't near add bad as you think. Hopefully it works and I don't need to go back for a second ablation. Good luck!
Your story sounds a lot like my story..... Wait!.... Sounds like a lot like all of our stories. My SVTwas for 54 years. My physician was concerned of high heart rate and an aging heart, so I decided to get it done. Left side also, but no puncture. He went through an unsealed flap in my septal wall. Unlike you, I was under general anesthesia the entire time. I woke up fresh and was out the door several hours later. 2 years now SVT free. Expect some jumps, and skips for up to a year following yours. Perfectly normal. Congrats, and enjoy your life!
Hi there Everyone Im 22yrs old And just found out yesterday about It Im one of those people who literally panics about anything wrong with me for the most part im healthy im going to see a specialist soon im very worried but after hearing all your stories I feel a little relieved Is there any questions that you guys didnt ask that maybe I should?
or any other advice you can give me would be greatly appreiciated
I can't think of anything to say that I haven't already said. I would say try to stay as calm about it as you can because as you have read the procedure to fix the problem is really not all that bad. Best of luck at the doctors and do let us know how it all goes. Stay strong.
My story is similar to yours as well! Had SVT from the time I was 13 until the time I was 24 years old.....was hospitalized twice and had to get adenosine and lived in fear of my palps coming at any moment so I decided to get the ablation. My ablation went well! I was in the cath lab for about three hours and my Doctor said my pathway was easy to find and only had to burn 1 1/2 times. The procedure wasn't so bad....the scariest part was when he put the catheters in and started to make my heart go into SVT but besides that I don't remember much. When I woke up he told me I was cured. It has been 11 months now and I have had no SVT attacks. Although for six months after my ablation I had very, very bad PAC's (ectopic beats) that felt like flutters, "mini palpitations" or heavy beats. They just started up again but I know they come with stress and can come at random times and then go away. Reading these post makes me feel better because it seems that many people get funny beats after the ablation and that its normal (like my Doctor said). I hope everyone is well and thank you for the great post!
p.s I am in medical school now to become a PA and we learned about the heart, PAC's are so benign that whenever one of my professors asks me how I am doing they say "Those PAC's are nothing and almost all SVT ablation patients get them and its normal" so that is good news!
I am scheduled for my ablation at Penn in a few days (4/8/13), so reading all of these comments has made me feel a lot better. I'm a 32 yr old female who is pretty much healthy otherwise, but the whole idea of the procedure has been pretty much freaking me out.
Thanks for your kind note. I'm glad to have been able to help. If you have any questions either before or after the procedure, don't hesitate to contact me. Take care and I will check in with you via MedHelp message sometime next week.
I had catheter ablation on Tuesday... well, kind of.
I had the catheters put in and then they sped my heart up to see where the problem is... they found the problem is in the middle of my heart so they decided not to do anything about it as its too dangerous and could leave me with a pacemaker if they mess it up.
After an hour of checking that was the only problem the catheters were taken out and I was returned to the ward. I had a lot less sedation that a normal ablation as they didnt have to ablate anything so I could feel everything that was going on and it hurt a fair amount - I could have asked for some more sedation but decided against it.
When I came back into recovery I was told to lie flat for a while, which I did, then when they went to get me up and walking I unfortunatly had a re-bleed from my artery... by far the worst bit of the whole procedure, and due to this I now have a big bruise on my leg!
Its not as bad as you think though, I was scared before hand but was ok in the end.
My 16 year old son had SVT ablation yesterday. He thought he would be asleep but the DR said they had better success rates finding the location of the problem if he was awake. He went into surgery about 10:15 am and within an hour they came out and said they were able to replicate an episode. He was fortunate his issue was in an area of the heart where they felt comfortable to burn rather than freeze (better long term success rate) he was done and in recovery by 1:30pm. He was uncomfortable in the areas where they went in (neck and groin) but they gave him 1 milligram or morphine and he rested comfortably all afternoon and was pain free by 6pm when he went to his room.. They kept him overnight, he slept on and off. came home today at 10:00am. and is now resting comfortably in my basement playing x box. No pain or complaining...
So I had my ablation yesterday and was so scared I was a crying wreck!
I got into lab and my consultant settled me down, then when I was ready the nurse sedated me and I went to sleep.
Next thing I know I woke up on the ward!
Im a bit sore but nothing a bit of codiene cant fix.
I really. Needn't have worried! It really isn't that bad!
I had my op at QE in Birmingham uk and they were fantastic!
Good luck guys!!!!
Congratulations! Join the long line of former SVT patients that have come through this forum. You'll probably be walking around by tomorrow. It's hurts a little for a couple of weeks, then you're as good as new.
You should check if you have a latex allergy. I thought I would die after a catheter and then I found out they had used latex and the allergy had caused it to be inflamed inside. The first reaction may not be horrible but the allergy gets worse and you DONT want to know what happens after that. To be safe, just tell them you have the allergy so they always use non latex and you should not feel any pain after removal.
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