Diagnosed with svt and its controlling my life. Should I do the ablation surgery?
Posted , 12 users are following.
Hi!
I was wondering if any of you had figured out how to help manage your svt? I'm 23 and they finally captured an episode when I was wearing the event monitor a few months ago. I've tried taking beta blockers but I hate how they make me feel. My doctor mentioned the ablation surgery because svt has been completely controlling my life. I used to be very active playing multiple sports, volleyball, softball, running, going to the gym mutple times a week and now I'm terrified to do any of it because exercise tends to trigger my svt. Especially things like squatting or anything that has quick movements. I'm also a little skeptical of the surgery because I heard it can sometimes cause symptoms to be worse and since I'm only 23 I don't know if I want to risk that. Any advice would be great.
0 likes, 17 replies
mary90 amy19390
Posted
Hi Amy,
?I sympathise as I suffered from SVT for about 30 years and was never able to control the attacks which were random and I couldn't identify any trigger for them - in fact they tended to happen when I was just sitting down relaxing. I had an ablation a year ago and haven't had one since! So I would recommend it to you, especially at your age as you want to be able to live a full life and not be afraid to do things all the time.
It is very safe, you might be warned that it's possible to destroy the regulating mechanism of your heart and then would need a pace maker fitted but this is very rare and a cardiologist would know whether the place he was burning was too close and would freeze instead of burn which is safer. You could control the SVT with beta blockers instead, but do you really want to be taking medication for the rest of your life?
?If you want any more information about the procedure to help you make up your mind I'm happy to help. Good luck!
amy19390 mary90
Posted
Thank you for your reply! Did you ever try beta blockers? I tried them for a few months but felt pretty terrible on them. Very tired and weak all the time. Which is why the doctor mentioned the ablation since I wasn't responding well to the medication. How did you feel after the surgery? And why did you wait so long to do it? I really appreciate you taking the time to respond
mary90 amy19390
Posted
I had propanalol which I took when I had an attack but even then they lasted over an hour, they'd go on all day without medication, I never took beta blockers all the time because my attacks were so random, sometimes twice a week and then months apart. I was completely wiped out the next day but I don't think that was just down to the propanalol but the attack itself because it used to go up to around 220bpm.
?I wasn't offered the ablation before because I could never catch an attack on a monitor. It never happened when they gave me one, in the end they gave me a monitor to use as and when and I finally caught it and the op was suggested. It didn't work the first time because the cardiologist was unable to trigger an attack during the procedure - that happens sometimes and it's why you have to be awake or everything shuts down. I was so disappointed! However they tried again a few months later and it worked. Afterwards I felt tired for a few days and had occasional palpitations but it settled down in a couple of weeks and everything has been steady since.
?I hope that's helped to put your mind at rest. The procedure itself isn't painful, you'll be sedated, it's a bit uncomfortable and you have to lie still for 4 hours afterwards to prevent bleeding from your groin but really worth it to get your life back again. I hope you decide to go ahead and everythig works out well.
henry55283 amy19390
Posted
At 23 you're way too young to live with this for the rest of your life. The episodes will most likely to occur more often and with greater intensity as you age. I dealt with it for my entire life, but once I hit 50, it became too difficult to manage and it was definitely interfering will life in general. I decided to have it done and wonder why I didn't do it before. I had the ablation done 4 months ago and I couldn't be more happy. No regrets. Get it done if it's affecting your quality life like it appears to. I hope you do this sooner than later. Best of luck.
amy19390 henry55283
Posted
ciaran33745 amy19390
Posted
Hi Amy. I was on several different meds to prevent SVT over the years but the ones that worked best also tended to make me feel most ill. Like you, I too often felt faint and weak and nervous. Eventually, I disliked the side-effects so much, and found it so difficult to function normally, that I stopped all meds and tried to cope with more frequent SVT instead.
Five years ago I had an ablation that cured my SVT completely. No meds since, no Cardio visits, nothing.
I didn't realise how much a prisoner of SVT I had become until it was gone. I missed out on some important parenthood stuff because I was afraid to do lots of things that would have taken me outside my comfortable distance from a hospital.
They will not offer you an ablation unless they consider it a very low risk and very high success rate procedure in your particular case.
The ablation procedure is no big deal. I remember it as being no worse than just a single SVT episode.
I couldn't recommend it more, especially to someone of your age.
Go for it
amy19390 ciaran33745
Posted
Thanks so much for your reply! what was the cause of your svt symptoms? and what tests did you have done prior to your surgery? I've had an echo and stress test as well as the event monitor which is what found it but I cant help but be concerned theres something else going on especially since mine only happen during exercise. I have an appointment with my cardiologist tomorrow so I'm going to discuss if he thinks there should be any more tests done prior to meeting with the electrophysciologist. How was your recovery from the surgery?
ciaran33745 amy19390
Posted
Hi again. SVT triggers and symptoms vary quite a bit from person to person. My most common trigger was nothing at all, just relaxinf. After that the most definite (and common until I realised it) was caffeine, even decaff. Next was sudden bending/gravity (possibly what you call 'exercise'?). Next was a delayed reaction to mental or emotional stress (usually a day afterwards).
Had every test under the sun. Heart otherwise very healthy. Didn't show up on a mobile event monitor. Eventually caught in A&E.
If you've definitely got SVT then I doubt there are many or any other tests worthwhile apart from confirming that your heart is physically fine (which it should be).
p.s. please be careful whose advice you choose to trust on fora like this (including mine!). It might be possible some poor souls sometimes use places like this to try to address irrational stuff, whick is okay, but they can encourage unreasonable and detrimental fear in bystanders.....
Lolasmom amy19390
Posted
Hi Amy,
I was on beta blockers prior to my ablation. They made me feel just awful/ My heart rate was very low, and I had absolutely NO ENERGY. Just felt like a zombie.
I then went for the ablation, but it was unsuccessful due to not being able to locate irregular circuit. I was very anxious prior to the ablation. It was disappointing not being seccuessful, but the EP Specialist thinks it was because of the anxiety medications I was on. I am in the process of weaning off the meds, and will diffently go for a second one. For sure.
I did not go back on the beta blockers after that. No way do I want to feel like that again.
I am excited to be able to go for it a second time
You are way to young to have to deal with this when you can try to have it corrected. My AVNRT started late in life, so I have only been dealing with it since Fev / 16
Wouldn't it be wonderful to not think about it ever again? Go for it!!!!
sarah06516 amy19390
Posted
I've had SVT for over 20 years (and I'm only 31).. I was offered an ablation when I was first officially diagnosed at 16.. I said no because I was terrified and to be honest it didn't affect my life except for when I was having an episode. As I've gotten older and especially after having kids, my episodes have become worse. I usually only have a few episodes a year but they are much more severe and harder to stop. Also, every day I have terrible palpitations and little things like laying in bed can make my heart beat funny. So in May last year I decided to go on the waiting list for ablation.. I finally got my turn in Feb this year.. unfortunately during the procedure I went into afib and for some reason I didn't respond to the sedation (even though they gave me a truck full) so it was not safe to shock me back into normal rhythm and continue so they had to stop the procedure. I'm waiting for my second attempt which will be under general anesthesia. Unfortunately it has been scheduled and cancelled twice in the last month (very frustrating) and I spent a week in hospital recently because I had over 20 episodes of SVT in one day which they could not stop. And also an episode of afib the same day. so hopefully sometime in the near future I will be SVT free.. but I recommend u try, even though I'm not cured yet, wish I had made this decision earlier because my quality of life over the past 5-10 years has not been great. I've spent too many good years letting SVT stop me from living. If it's already affecting u this way then chances are it will only get worse. Good luck with whatever u decide!
hannah47501 amy19390
Posted
Hi Amy,
I am also 23 and had my ablation 2 weeks ago. For 3 years I let it control my life, I didn't drink alcohol, go out, do anything normal without having that fear in the back of my head that an episode might come on. I finally plucked up the courage because I thought I cannot live like this anymore.
2 weeks later I cannot even describe the feeling of how free I feel and that I can actually do things. I'm not scared I'm excited to live my life again. You have to do what you think is best but I reallllly advise you to have the surgery because you don't want to live the rest of your life worrying, anxious,m or being restricted to do anything.
You will be fine it really isn't as bad as what your imagination is telling you! X
Lolasmom hannah47501
Posted
So happy to hear you are doing well. Â Good for you
amy19390 hannah47501
Posted
I totally understand I just graduated college and a lot of times it definitely slowed me down and made me hesitant to do certain things with my friends. I also worry that my lifestyle during college may have brought out the svt symptoms /: Idk if thats possible but there was definitely a lot of drinking not so good eating the first two years etc. I actually lost a lot of weight in college due to not eating enough so over the last 6 months I've really been trying to treat my body better. I'm defintiely thinking about doing it just because of how much in controls everything I do and I'm so tired of being worried about being active and exercising. I appreciate your comment and I'll keep everyone posted if I decide to do it
lindsay49624 amy19390
Posted
Hi Amy, i also live with SVT - and the most useful thing for me was an instruction given to me by a paramedic during an episode - he told me to blow on a pen real hard - like when you try to blow up a balloon and it won't go! You know what I mean! It resets the Vegus nerve and stops the SVT. Changed my life! As soon as an episode starts, I do it, and it stops. I didn't want the medication or the surgery. I know the triggers that set me off - too much alcohol, stress (usually the day after) and too much caffeine. I have always been an avid herbal tea drinker so often not an issue - but I like a glass of wine! Hope that helps! He also said, if it didn't work; then plunging your head into ice water also does the trick! I've not tried that one! Lol
hope all improves for you x
dakotah03656 amy19390
Posted
Hey Amy,
I don't know if you decided to have the ablation or not, but I figured I would share my story with you to help in your decision. I was diagnosed with SVT when I was 18 and had my first ablation shortly after. The way my SVT presented I had to go through surgery awake and my first one lasted 6 hours. They burned several places and thought it was a success. Six months later we find out I still very much have something going on. I opted for a second surgery, because the medications & SVT were not allowing me to live the life I wanted. Second surgery, I was awake for this one as well. It lasted 10 hours and showed to be successful. I had no issues. I started working out like crazy, doing insanity with a group of friends. I felt fantastic. I got pregnant a few months after I turned 21. The SVT returned, I had to be hospitalized at one point. I have a fantastic electrophysiologist, he found a med combo that got my condition under control where I had a healthy pregnancy and baby. Although, I had to be closely monitored. The SVT stuck around after delivery & resulted in a third ablation at 23. This procedure was also done awake & lasted 10 hours. Surgery was a success, I have had another baby since then & no recurring SVT. My second pregnancy I was diagnosed with POTS, but it subsided after delivery. Going through all that was worth it in my opinion, because the quality of life is so much better. I am able to be physically active & keep up with two munchkins. If you have any questions I would be happy to answer them. I am most definitely not a professional or claim to know all, but I can give you some insider pointers regarding surgery and the like. Good luck & I hope all goes well for you!