Looking for people with experience with SVT

Posted , 9 users are following.

My girlfriend was diagnosed with SVT a year ago. We live a moderately active life, and episodes began to affect her day to day (shortness of breath, palpitations, etc). She had an ablation performed last December. The surgery was anything but routine. We were told she would be under for a couple hours, and back on her feet the same day. We (myself and her parents) waited in the waiting room for 7 hours, before being told the surgery was a success, they had kept her overnight for observation. I'm not too clear on the details of the actual surgery, but I do know she remembers a lot of it, and she felt pain throughout. Suffice it to say, it was a difficult experience for her to go through, but she made it out. 

Fast forward to two weeks ago, she started having episodes again. Life has been a bit stressful lately, so we attributed it to anxiety, but once the episodes became a bit more frequent, she made an appointment with her cardiologist. We found out yesterday that her SVT has returned. Whatever they did to close up whatever pathway in her heart (I'm not a doctor) has opened up again and her cardiologist has recommended another surgery.

After doing some research it seems that SVT coming back is more common than we thought, but she's still terrified to have another surgery done, especially if it's going to be back in a year. 

I guess what I'm looking for is anecdotal experience of a repeat surgery having long term success, as well as any other support that can help my girlfriend during this really tough time for her. I'll support her through whatever decision she makes (whether to have the surgery or not) but I know SVT can weaken a heart over time and want her to live the longest life possible because I love her.

Whatever support or advice or resource you can offer would be greatly appreciated. 

Thank you!

 

0 likes, 17 replies

Report / Delete

17 Replies

  • Posted

    You are a lovely man, I was touched when you said you loved her.  I am 70 years old and have had ectopic heartbeats since I was 28, I have had untreated svt for 11 years despite trips to A & E where it went back on its own, February I had an attack of 197 beats a minute, this time put back with adenisone, I was put on bisoprolol 1.25 , I do not want an ablation  because I have heard so many failures on this site.   As you can see I have lived to 70 with this condition, not easy at times. Sorry I cannot comment about ablation.

    Report / Delete Reply
  • Posted

    Having a second ablation is better than medication for life, I know the ablation experience can be traumatic but I assure you it's a thousand times better especially for SVT.

    They didn't tell you what kind of SVT she have?

    Tell her she is young and healthy to go for it, she was strong enough for having the first one, second one should be piece of cake.

    Report / Delete Reply
  • Posted

    Hi!

       I have had SVT for many years. Had my first ablation 11 years ago and it was not a success. Went on medications and then had my second ablation last month. I was told that it was a success, but six months later it returned. The doctor told me I grew new pathways. The doctor who did my second ablation (who saw the records since they are in the same practice) says the first doctor did not succeed with my ablation (and then handed me a bunch of nonsense).

      I was also awake during my procedure, though it only lasted 90 minutes. My doctor says that "a sleeping patient is a sleeping heart" and indicated that he would have far more success if I were not heavily sedated. It was a very unpleasant experience, considering that I was pretty much asleep for the first one. It was very traumatic.

       Ablation surgery has a very high success rate. There is absolutely no way of determining from the first ablation if the second will be a success. I understand your girlfriend's trepidation. I am in no rush to have another one, if this second ablation was not successful. Has she ever tried heart medication? It's something to consider. I also

    would not recommend that the ablation be repeated by the same doctor. 

    Report / Delete Reply
  • Posted

    I also wanted to add, not to be disrespectful to the other poster, but this needs to be your girlfriend's decision and her decision only. I know that you love her and want the best for her, but she had a tough experience and I hope that you will just offer information and not pressure her to have another ablation if, for now, she doesn't want to.

    Keep in mind too that when a person gets great results, they don't usually post on boards anymore. So it may seem as though the failure rate is super high... but it's not. 

    Report / Delete Reply
  • Posted

    I was told by my cardiologist that SVT does not weaken the heart. I was totally under general anesthetic so ask the doctor to put her under completely. Mine took 4 hours and I spent the night. It took me about 3 months to totally recover . During that time, I was tired all the time, and had some shortness of breath. I eventually did recover and the procedure is 95% effective. If she does have the procedure again ask the doctor to put her to sleep during the procedure. 
    Report / Delete Reply
  • Posted

    I'm pleased to see you receiving lots of replies.  The decision, of course, will be your girlfriend's with lots of input from you.  I encourage you two to do as much reading as you can.

    After 50 years of SVT, I decided, two years ago, to have an ablation.  My physician found two problem areas and thought he'd repaired both.  I had a great month, and then my SVT returned.  That was and is one of my life's most significant disappointments.  For the next two years, my SVT became more and more frequent.  My 2nd ablation was two months ago.  I resumed normal life  a week later.  That includes lots of exercise.  I'm doing well, but still in a "wait-and-see" mode.

    We just went through a very serious hurricane challenge, and my wife and I had responsibility for 7 other people's safety.  Stressful, and I had some anxiety challenges, but we made it.

    A bonus for me, so far, post ablation #2 has been many fewer ectopics.  During our hurricane, I had a bunch, but I suspect that's not unusual.  I wish the two of you well.  Take care. 

    Report / Delete Reply
  • Posted

    i know how you feel, mixed advice,, we need some true answers

    I have been diagnosed with svt... Doctors are recommending an ablation.... They have not given me any details of which side the fault is on....  But like with most people suffering from this condition the anxiety that comes with diagnosis is extremely high... I have been to several cardiologists who all gave me different answers...I also except that they have different degrees of knowledge...  My concerns are that one cardiologist says an svt episode of 247 BPM is too high and dangerous for your heart to stand..  (mine lasted about 45-60 minutes).. Where as another says I can go on life living normally and to ignore episodes and not to worry... Easily said then done, but their we go....  If the latter is true why are people with svts being rushed to hospital and their heart restarted with the drug adenosine... surely the ambulance team would turn up diagnose svt and tell the patient its not life threatening and to ride it out.  Also why are the hospitals offering people with SVT  operations with potential complications for a non-life threatening condition... I have been quoted so many times the success rate of ablations at the hospital  .. But what they do not say is or they do not know,  when you have your operation and walk out of the hospital complications can occur several weeks or months after the ablation.. This data would not be recorded.. E.g if I have a heart attack/stroke/blood clot  2 months after the ablation this would be recorded as cause of death as a heart attack/stroke/blood clot  and not a complication from surgery.

    I was considering the ablation at first as SVTs do effect your daily life not just because of the uncomfortableness of them but mainly the fear of damage to the heart or the possibility of dying,  but now I'm not sure. Cardiologists state that SVTs are benign and non life threatening, if this is the case why offer people operations that could possibly have such serious outcomes.... say 1 in 400 suffer a stroke etc etc.. to me thats still quite high..  Many sufferers on the internet post their own stories of successes and not so successful operations begs to differ the true statistics...Too many seem to get reoccurrence of SVT after an ablation and even worse go from SVT to AF.   

    Statements online say ‘ in most cases SVTs are not life threatening’… I want to emphasise on the words ‘most cases’ as this does not mean all cases.  This little grey area is the reason why sufferers are anxious  and possibly the reason why we end up in A & E or emergency departments with our SVT episodes.   If we didn't have this ‘what if its life threatening’ hanging over our heads i am sure most sufferers anxieties having another

    SVT would also dissipate which would improve their lives dramatically, more so than having  an ablation procedure.…

    What I would really like answer to is

     If I had an SVT of e.g 300BPM and stayed at home without intervention for hours/days and   no matter how uncomfortable or symptomatic,  would it kill me or damage my heart?And that all the symptoms from an SVT e.g tight chested, breathlessness, etc would disappear. 

    If the answer is yes… then the statements that it is not life threatening is false but would encourage me to have an ablation.

    If the answer is no, then I possibly wouldn't put my health at risk with an operation thats not complication free.  Also the anxiety of having another SVT would mostly disappear due to the confirmation that it will cause no harm whatsovever to my heart which would be the reason for having the ablation in the first place.. If I chose to have an ablation knowing that the SVTs are not life threatening or damaging my heart, and just for the reason that its effecting my life due to anxiety and worry, surely then just the confirmation of the above

    would resolve this issue then their would be no need for an ablation.  Of course in some peoples cases they would have the ablation as they have SVTs too frequently.

    Even if a persons SVT was around the 160 BPM this doesn't mean that their next wont be much higher.  And if the cardiologist says that this rate is not life threatening and not to worry about it and go home, maybe the next time this person is sitting at home with an SVT of 250 BPM or more, they would stay at home as the cardiologist advised and this potentially could be dangerous.  So we have to look at the worst case scenario for all sufferers and get the information out their as to relieve peoples worries and stress

    Report / Delete Reply
  • Posted

    I had several episodes of SVT with my heart rate being 175 or more. My cardiologist told me that if it stayed that way longer than an hour, then go to the ER. 

    Live been told by the cardiologist that I don't have a bad heart, it's just my electrical system is messed up. 

    I've been told I'm not at risk for death or heart attack. The episodes just make you feel like crap and it would wipe me out for several days with just being exhausted! It's like you are running a marathon without the exercise. One that I had, I felt like I was going to pass out, nauseated. It does make you feel like you are going to die. 

    I did have an ablation last October. My cardiologist says that Ablations for  SVT are 95% effective, he said if you have atrial fibrillation and the ablation for that is 80% effective. 

    I'm glad I had it. I was slightly short of breath and tired for 3-4 months. When I had the ablation the doctor also found 4 other abnormal rhythms. Atrial fibrillation, atrial tachycardia, atrial flutter and asymptomstic tachycardia. They can't all be fixed, unfortunately. 

    Ill be on medication from now on. 

    I asked the cardiologist how high is too high for the heart and he said above 175. You don't want the heart to be high a long time, because it does wipe your body out but V-Tach is the rhythm that is deadly!!! Within a very short time with that, you would have to be resuscitated. With V-Tach , there is usually something else going on with your heart other than the electrical system. 

    I was in ER last year 5 times with SVT and none of those times was it diagnosed. I think it's hard to get a diagnosis sometimes for that. One time I was told dehydration, but I wasn't. One time my stomach bloated really bad with a high heart rate. I was also told that some people have increasing episodes and some people don't. You know the saying?. "Doctors are practicing medicine?" Well??????

    i now go to 2 cardiologists, one did the ablation and the other checks me out in other areas.

    this is a different subject, but I would recommend people to get a fit bit charge 2- it shows your heart rate and it is extremely accurate. I checked it against my pulse and it's very accurate. Very convenient to be a watch and keep a check on my heart rate. 

     

    Report / Delete Reply
    • Posted

      hi linda ,,, i have an app on my iPhone that measures my heart rate... i had a high heart rate  2 nights ago that made me feel sick,  I am sure it was only about 130BPM but was in bed and it was going on for an hour.. so went downstairs and felt  my heart rate come down a bit.. i checked on my iPhone and it was 100 BPM.. I asked my husband to check is just to see how accurate it was and his was 60 BPM.  i did this check about 10 time for myself and my husband.  So yes these fit bits etc and iPhone apps are quite accurate...As I've said before we need some definitive answers to whether SVTs are dangerous.  You mention V Tach... at which point can an SVT go into Vtac and do they check whether your heart can go into this when doing their MRI scan etc.  I have been told by my cardiologist my heart is ok... but i don't know why but I'm pessimistic to what they say... I don't believe that too much reading into the internet is bad because it reveals the truth about real life peoples experiences, such as yours... saying that SVTs are not life threatening, BUT they could go into V-tach which could kill you does'nt put your mind at rest...I would love to go on holiday but my life is on hold... We like to go to remote places and this is of great concern as if I need a hospital near by then we can't go anywhere.

      I hope all goes ok with your life and please keep updating if you can... take care

      nikki

      Report / Delete Reply
  • Posted

    Mine was ignored for years until February at 197 beats a minute and could only be put back with adenosine, they stopped and started my heart 3 times and it did not go back.   If they knew how distressing these attacks are they would take it seriously. I,m now on bisoprolol which I take twice a day if I needed.    
    Report / Delete Reply
    • Posted

      When I saw the heart specialist in March he said he would send me to see a electrophysiologist at Papworth, I am reluctant to have an ablation because I,be lived with this for so long and after reading about the failed attempts it put me off.  5 weeks ago I broke my ankle, after the operation my heart went into overdrive for quite a while, I can vaguely remember them telling me to take deep breaths and a heart doctor coming to me in recovery, I was taken to the ward on a heart machine and oxygen, at changeover I heard the sister tell the next shift I,d had a bad attack of svt.  I think it has set me back because the ectopics and strong heartbeat seem worse, I,m immobile at the moment until they take the cast off then I will visit my doctor.
      Report / Delete Reply
    • Posted

      Hi ann , sorry to hear of your circumstances .. I am also  under papworth ...!i have come to the conclusion that  I will not risk the ablation ... I will try and change my lifestyle ,,, but I'm not sure what the triggers are .. if any !!!!  Although I worry about raising my heart rate for more excercise as this also seems to induce an Svt ... what do we do ??? 

      Report / Delete Reply
    • Posted

      Many things set mine off, my stomach too full, going to no2 on the toilet, anxiety , alcohol, I worked that out many years ago so do not drink now,  tired on a long journey abroad, rushing around which I used to do all the time.  It affects your life so much and other people do not understand unless they experience it themselves.  I,ve lived 42 years with this and I always felt there was something wrong with me but it was never taken seriously, nobody in the medical profession explained this to me.  I get ectopics a lot, it makes me feel very tired, I,m in bed by 10pm and up at 6.30,  I think I,m a lark anyway!
      Report / Delete Reply
  • Posted

    I just had my second ablation six weeks ago. My first one was a failure, eleven years back, and I've been on medication all of those years in between. In my opinion it is seemingly IMPOSSIBLE to know and stay away from, all of the things that can trigger SVT. Sure, there are the "easy" picks: caffeine, and alcohol. Then there are emotional triggers like anxiety and feelings of dread that can bring on SVT. Should we not exercise because it COULD bring on arrythmia? That doesn't seem heart-healthy. Even bending over can trigger SVT, and for months before this ablation I would try not to bend over. I just can't live that way indefinitely.

       I do totally understand the fear involved with ablation, the chance of failure even though the percentages are in our favor. If I get my arrhythmia back, in time, I can't swear that I will go through a third ablation. But what is most bothersome to me is that feeling of being a walking time bomb, never knowing when I would "go off" and need to go to the hospital.

       

    Report / Delete Reply
    • Posted

      Completely agree gr8fulwoman.  Mine were triggered by bending.  But I'm going to make an effort in cutting down on alcohol, caffeine etc etc. and to start exercising more but slowly slowly..

      If I was having a lots of SVTs every week then yes i would consider the ablation as that would seriously effect my life..

      But if a cardiologist could confirm that their is no need for us to go to hospital because as I have been told by mine that it is not life threatening and not damaging to the heart then that would get rid of a 

       LOT of the anxiety and worries of the fear of having another SVT attack... This is the question we need the answer to, because I have received mixed messages from different cardiologists.  Do we need to go to hospital????? I don't know...    At the moment a holiday is out of the question because i don't know these answers.  How do we find out the answers ,,, any ideas

      Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up