42 year old women with SVT awaiting ablation,
Please can anyone help me decide whether to go ahead with this op. I have had this condition for 30 years (diagnosed for 2). I have been taking beta-blockers which were of no help and just been switched to Flecanide - hope that works.
I have managed to cope with this over the years but am really frightened now as I dread having to end up with a pace maker or worse.
This condition has molded who I am and how I behave and although I enjoy life, work and my children I know that I live every day with this heavy cloud over me that claws at every thought and decision I make about simple everyday things - like not wanting to bend down and pick up my childrens clothes - I could go on but you all know the rest!
I want to be a normal Mum doing all the active things with my kids and not be rushing off to A&E anymore. Please can anyone share their experience of how the ablation was for them and how scarey it was? Has anyone had the op at Papworth?
I hope all of you out there are making progress in dealing with your condition and PLEASE - if you are young do all you can to be free of it otherwise it WILL dominate your life even if like me you don't want to admit it.
Thanks to you all for sharing your thoughts as I can now see that I am not alone.
I have suffered with what I now know to be SVT for over 30 years , to a greater or lesser extent . Sometimes I would have 2 or 3 episodes a day , and for no aparent reason , suffer no more for weeks or a month . There appeared to be no particular pattern , until the last couple of years (i'm now 54 ) when the increased frequency and longer periods of up to 30 minutes became a real problem . The medication prescribed by my GP did not control it and in April of this year dizzy and feint spells came with it . A spell in hospital and referal to a cardiologist who prescribed propaphenol finally gave some relief , until an ablation last week . Only a day in hospital , a little discomfort , and so far so good ! If your specialist advises ablation try not to be afraid of it . It isn't the most pleasant way of spending a day , but no worse than a dental appointment .
Good luck ,
Will.
Thank you Will
I really appreciate your reply and find it encouraging. I am going to see the cardiologist in October for a final discussion as to whether the ablation will be the right thing for me. Based on my own experiences and feelings about it I and the comments I have read on this site I feel confident that I would like to go ahead.
At which hospital did you go for the op?
Do you know whether the condition - if left untreated - is more problematic / dangerous as you get older?
Thnaks again
Jay
Hi Jay,
I was treated by Dr Todd and his team at Broad Green hospital in Liverpool . I cannot praise them enough . they were supportive and friendly as well as compassionate .
I was told that each case is different , but its a condition that seems to become more of a problem as we get older . I don't know if its actually dangerous in itself , but a heartrate of 200+ can't be a good thing and to be rid of the condition if possible was an easy decision for me .
I'm sure your doctor will look after you .
Please let us know how you get on .
I'll be thinking of you ,
Regards,
Will
Hi All
Thanks for your replies. I thought I'd let you know that I have the op planned for 3rd Dec. I am still really nervous but have taken great strength from this site and am going to go ahead.
I will post a message as to how I get on
Thanks to you all
Julietee
Hi I am having an ablation done at Leeds General on the 18th March, I can't beging to explain how frightened i am, I fear ending up with a pace makers or worse. Please could you tell me if you had the same fears and what should I expect with the ablation. Mine is a overnight stay too.
I hope all goes well for me and I don't have to take any more tablets. I live in fear most of the time of an svt attack.
Regards Helen
Hi, I would just like to say good luck to everyone who is going for an ablation. Unfortunately mine on the 31st jan was unsuccessfull but I have every intention of having it done again. I was really scared but the staff were fantastic and the professor spent so much time explaining the proceedure and answering any questions. It was a bit uncomfortable and although it lasted 4 and half hours it didnt feel like it. I was kept in overnight and home the next afternoon. I bruise very easily and had excessive bruising. I also developed a haemotoma and an inferction in my groin. Not very pleasant as you can imagine. 3 weeks later and almost cleared up. This doesnt happen often but I wish i had been aware that it could happen as I would have gone to my docs sooner. This isnt to put you off or scare you only to make you aware. I am now on flecanide but still episodes of svt. I am going to remain positive and not let it get me down and I know that it will work the next time except I wont have the after effects cause I will be a step ahead!! I hope this has helped you and that things work out for you.
:D Just had ablation last week after 50 years of suffering SVTs I had the opportunity 10 years ago and was so scared I decided just put up with the ever increasing numbers of episodes (6 last year of which 5 ended up with me visiting the local a& e)...you know the ones panicky sweaty palpatations light head fluttery feeling in your chest wondering whats happining to you wondering if they will ever stop thinking (wrongly as it happens) that your heart might just give up etc! My only question now is why did I wait? Id tried all the vagus nerve techniques to help stop them before but only ever manged once (worth talking to your doc about giving these a try but Ive never found them to be particularly successful)The whole procedure was painless the staff caring and supportive and all over in a couple of hours (less than the usual length of an episode for me)far less worrying and uncomfortable than a shot of adenosyne if youve ever had that to stop the SVT. I really cant quite beleive how toatally relaxed I was while having the procedure and although I as awake for the ep survey (the bit where they locate the faulty pathway but really nothing to worry about)my cardiologist sedated me for the ablation itself and i really wasnt aware of any sensation at all. Im told 95% success is the order of the day and so without any question would recommend anyone with straight forward AVNRT) to have an ablation if offered and dont even think about being scared as I was there really is no need..honest
Hi Julietee
I was just wondering how your ablation went?
Mine is scheduled for May 27th at Royal Brompton in London. I'm nervous but looking forward to eradicating this awful condition!!
Matt
I had my ablation yesterday and its been a very unpleasant experience with the sedation I have been very sick during the night with vomitting and diahoreia and my period has started 2weeks early due to all this, I then collapsed when trying to stand and have a drip put in my arm and continuous blood sugar and pressure tests done, by experience wasn't a good one so be aware that this experience can be awful for some people :cry:
My husband had this procedure last August and he too was very scared, but he was equally as scared waiting for an attack to happen. Although he had only had about 3 they were getting worse and more frightening each time. Medication made him feel awful so he felt he only had to gain. The waiting for the op was hard but the staff at Papworth are fantastic and really took care of him, before, during and after. I think during the operation he too was a bit scared as he was conscious, he felt some discomfort and they kept him topped up with pain relief. He needed some time after to recover as an operation causes emotional and physical stress, however 5 months on he's glad he had it done. He came off medication and has not had an attack since. He says he sometimes has the feeling that it going to but then it just goes away. It is certainly better than worrying all the time about when and if an svt attack will happen and how bad it will be.
How are ALL you guys doing?
I am super scared! Sometimes i think i'm going to... The pain at times are unbareable. Then sometime it's ok... I'm sick and tired of being tired and weak. I'm a very active male and have been for a long time.But now I can't even work out or spend a long evening with my family without getting sleepy. Again I'm tired! But I'm also scared to have the ablation surgery done. Can anyone please tell me if their doing ok after their surgery. I need to know what should i do? Help Me!
Hi , I had the ablation proceedure in november 2007 and haven't looked back . I was in Broad Green hospital in Liverpool for one day , the discomfort was minimal and there has been no hint of the problems caused by the condition since . As a guest has said there were times when I had the feelings it was about to return but it never did . I will be eternally greatful to Dr Todd and his team for getting rid of a life-long curse . If ablation is what your specialist has recommended for you then go for it . I was scared but needn't have been . The reality is nowhere near as bad as our imagination makes it and I was assured ( correctly ) that the cure is permanent . Hope this is some help to you and you have a similar outcome . All the best ,William.
Thanks Will! I will go for it! Im still scared. But I will keep u posted
Hi just to say I am waiting for the ablation to be done and yes I am scared, but having had an svt 18 months ago and nothing since until last Monday where I had to phone 999, but because I had been given tablets just in case from the cardiologist the svt wasnt picked up, I then had another one on the Tuesday and again tablets did the trick and wasnt picked up, but Saturday I had 1 where i took myself off to A&E where it was picked up, I was kept in and there I had 2 one after the other with a rate of 225, and it got to the stage where the nurse bought the crash trolley in and I vowed there and then that whatever it took to never have to go through that again that I would so yes I am going to have it done and yes I am scared but I am more scared of it happening again so good luck and pls let me know how you got on, and William thanks for sharing your experience
Hi dawn I've been an svt sufferer for about 6 or 7 years now. Have just come across the forum and hope your doing ok ?
Hi paul, doing ok thanks, been a bit anxious this week waiting for the next one to happen even though I am on meds to control it (fingers crossed) but you have had it for 6 or 7 years, how the hell have you coped with that, have they not put you forward for the ablation, there is a good piece on it on med help - Jannie411, she has done a blog about it from having svt to having the ablation and post op, puts your mind at ease a bit.
Hi Dawn . I know only too well of the feeling that hangs over you and I guess I've got used to it . When it happens you just want it to stop and when it stops not to come back. I had a reveal fitted by minor surgery about 2 and a half years ago to record automatically the episodes I was having . Put on bisoprolol after it revealed 48 episodes! Had an ablation which went fine . Not my most favourite choice of venue but a considered choice to end the curse as I call it ha ha ! Any way three months on no meds feeling like a new man and hey ho it was back with a vengeance . Instead of 2.5 mg a day of bisoprolol to control it I needed 10 . A year later I ve managed to cut down to 5 mg a day . Don t know what to do anymore I have an appointment to see the specialist coming up to discuss another ablation. I was told the success rate was 95 % pretty good odds I thought. The ablation is to stop the electrical pathways But I guess nature sometimes finds a way also . I wish I knew the answers Dawn..if it's any consolation I ve had hundreds of episodes and still here and cycled thirty miles on Wednesday . Take care . Paul
Hi Paul, go for it, I was talking to someone who had a friend who had to have it done twice, havent looked back since.