Ablation even though I haven't had an episode for 10 months?
I'm new here and I just want to thank you all for such genuine caring answers to all questions, it's really helping me to know I'm not alone.
I was first diagnosed with SVT 5 years ago when I ended up in A&E (ER) and had my first adenosin shot. I've had SVT since, around twice a year and have managed to stop it mself with vagal manovres (sp?) but a year ago I had 2 long episodes in one month which needed adenosin. I'm due to have an ablation within 8 weeks, I have been on the NHS waiting list for 10 months but tbh, I feel fine and haven't had an episode for 10 months. I was given Verapamil as a pill-in-the-pocket and have had to use it twice. It worked very well both times and stopped the SVT.
I'm wondering whether I do really need an ablation. Verapamil works so should i stick to that?I'm also worried about the cardiologist not being able to replicate my SVT as I don't get them very often.I'm also worried about dying...I have 3 small children and I'm very scared.
How old are you? SVTs generally start to become more noticable in our 30s and mature in our 40s. If you have a run of the mill svt that is. This means you will continue to have episodes and will likely get them more often as you age. Well I shouldn't say you will but most do. Having them as rarely as you do may pose a problem for the EP, you are right in that respect but you do have a very long waiting list so you have to weigh the prospect of waiting to a point where you are more active but then having to wait a long time while you are active. What did the EP say about your situation and you having rarer occurances? I know in the States, even being as active as once a week the doctors told me it was totally my call whether or not to do the ablation so it really is your call. But the ablation is really a super easy procedure with only a 1% complication rate so extremely low risk that said, you do run the risk of getting in there and nothing being accomplished by it so that is a risk for you but you really shouldn't worry about dying. No one can guarentee that it won't happen but the chances are extremely slim that it would and if you went ahead and did it and it was successful then you could rest easy the rest of your life not worrying about when the next episode will happen. If you are interested in reading about what happens in an ablation click my name and go to my profile and find my journal entry. It really is a piece of cake procedure. The anxiety about doing it was way worse than anything that happened during the ablation. Try to clear you mind and go by what your gut is telling you. It really is your best guide. Take care and keep us posted on what you decide.
First, don't be scared. Be cautious. I'll tell you when I considered an EP study with probable ablation. My episodes had increased from 3 to 5 per year as a child of six, to 3 to 5 times per month as a sixty year old adult. That's 54 years of SVT. I a, proponent of the procedure, and it literally gave me my life back. But if I was experiencing one or two episodes per year, ablation wouldn't be my radar. It has been observed by many here on the forum that many electrophysiologists are too anxious to do the procedure. At a cost of $76,000 US dollars, I'd want to make sure that when they go in, they're going to be to find it and take care of it. So when my episodes had steadily increased to more than several per month and considering my age and the increased dangers associated with it, my cardiologist strongly suggested that I consult with an electrophysiologist. I did and he felt confident that he would be able to at least find, and then hopefully fix it. I think these are the things you must consider. There is of course the risk factor of the procedure, which is minimal,for the average, healthy person. Another thing to consider is the fact that you could could come out in worse shape than when you went in. I don't know what your out of pocket expenses are, but if it is considerable, you want to make sure they you don't have to do in again.
I started on an anti-arrythmic med after having two Afib episodes 4 months apart. I didn't want to spend any more time in the hospital -- they always seem to make me worse before they make me better. To me, this was the lesser of two evils. I haven't had an episode for 10 months. In fact, my EP is considering taking me off the Norpace and Warfarin after one year without an episode. For me the ablation will be something to try as a last resort. Everyone has to decide this for themselves, but without an episode for a year and a pocket pill that works, I would probably wait on the ablation. It sounds like you are doing pretty well now.
I would recommend going in for the procedure. The complication rates, in experienced and well-equipped centres are dismal. Your chances of complete cure are very high, probably in the high 90's%.
Do you know any triggers for your SVT? Like spicy food, beer, adrenaline, ect. Try to trigger an event before the ablation yourself. See what works for you. I've read a story of one woman who was going in for a PVC ablation, and her biggest trigger was Coca Cola and chocolate cake. It gave her a guaranteed bigemeny. Well, her EP had her chug down gallons and gallons of coke and force fed her a delicious cake before she got on the EP table. As a result, her heart went haywire with ventricular ectopy, which was successfully mapped and ablated. Urine catheter came in handy during that 6 hour procedure!
Thank you all for your comments, it really helps in understanding all of this!I'll try to answer some of your points...
I'm 41 years old and fit and healthy (apart from SVT!) so part of me thinks that I'm better off having an ablation done now rather than in 20 years time. But maybe I'm just being silly thinking like that, I don't know.
Here in the UK we have a National Health Service so this ablation is not costing me a penny so there are no financial considerations to take into account.
I've been SVT free for the past 10 months and I think my change of lifestyle has had a lot to do with this. I have no caffeine whatsoever and although I love chocolate and sweet things, I try to restrict these as I have found that my heart starts racing within 15 min of having any and I worry that this might set off an episode.
It really is a difficult decision and one that I will have to discuss with my cardioloist when I see him before the procedure...it should be done in about 8 weeks so I'll see him 2 weeks before that.
I worry about having an episode when I'm on a plane, I worry about going on holiday, I worry about having to have adenosin again, which is so horrible and I worry about the prospect of adenosine not working...in other words, I'm just worrying myself sick! I'm not the happy person i've always been and I hate that but I can't help it. I know SVT is not life threatening and there are many people worse off than me but for the last year, ever since I had to have 2 shots of adenosin in a month my life has changed. I hope I'm not coming across as melodramatic, but unless you've had this you really have no idea about these feelings, so it's hard to talk to friends and family about it. So glad I've found you all here!
Michelle, I'll be reading your journal, thanks...
Another thing...could it be possible that I'm 'cured' and won't be having any more episodes? Has anyone heard of this happening?
If you have an accessory pathway svt then it won't go away. Afib has been known to disappear but the reentry arrythmias don't go away because the pathways that lend to the problem are a structural part of your heart you were born with. That said, if you are in your 40s and not experiencing many episodes then you may never be bothered by weekly episodes as happens with some people. But you will likely have another episode in your life at some point. If you are certain you don't have afib, they can tell based on your ekg and if you were in the hospital with the fast beat they would have been able to diagnose it right away. So if you weren't told it was afib then the chances of adenosine not working are rare. It is extremely rare of someone with run of the mill svt to need a cardioversion. I do have to say I lucked out a bit. I never wound up in the ER so have not had the experience of the adenosine. I had a few episodes I probably let go too long but they did eventually convert on their own. That said, if you are super concerned and worried about having a future episode then try the ablation. Talk to the doctor and see what he thinks but if he is confident he may be able to find your troubled area give it a shot. If it turns out he can't find the problem area then the worst is you will have had a couple of couple of catheters put in your arteries and since you don't have to pay a crazy high cost to have it done it may be worth giving it a try to see if you can be rid of your svt for good. I'd say since you will talk to the doctor before hand let go of worrying about it until you have had a chance to speak with them. I am sure he will be able to ease your mind about any concerns you are having. This is a decision you have to make but it really is a safe procedure and they take every precaution to insure you survive if anything goes wrong but the chances of anything going wrong are very slim. Well good luck, neither decision is good or bad, just pick the one that feels the most right to you. Take care.
Thank you so much for that...I will defiitely ask him if he's confient about finding my troubled area. Just ut of interest, did you have to pay for your ablation?
I've had 3 episodes that had to be terminated with adenosine and a anyone who's had that can tell you, it really is no fun at all. The 2nd time I needed 3 shots as they were giving me low doses and it wasn't working. I wish they'd just given me a big shot in the first place.
I definitely don't have afib and all the episodes I've had which have been recorded show just SVT. I didn't know about adenosine not working with afib but always working with regular SVT...
I read your journal and i'm glad it's all worked out for you...but I couldn't follow about the pvcs...what is that?
Yes, we have to pay for everything in the States and costs have gotten a bit out of hand. A cardiac ablation is probably about as expensive as it gets though. The total for my ablation came to $50,000 though I have heard others went as high as $75,000 but maybe mine was cheaper because I was in and out so fast. Anyways I have a yearly out of pocket expense limit for my insurance so I only had to pay $4000 for the whole years worth of doctors visits and the ablation. Kind of steep so though you can get an ablation here fast you really have to consider the costs of doing it before hand.
PVCs are premature ventricular contractions. Essentially there are some irritated spots in my ventricles that are firing off extra beats that throws the normal beat cycle off a bit. When one fires off the atria pauses to catch up. It is during this pause that I would sometimes fall into tachycardia. I had an extra pathway into my avnode but the signal going in was slower than the normal pathway but when there was a pvc pause it gave that slow signal a chance to reach the center of the avnode and then it proceeded to come out the fast pathway creating a loop where the signal kept going into the slow pathway and out the fast one. Because the circuit was a short one the rate would be fast. This is the most common form of svt and may likely be what you have though they won't know until they get in. I didn't know I had the pvcs until after I had the svt ablated then it became apparent what I was feeling wasn't related to the svt. The pvcs feel like a fizzle to me. I don't feel the extra beat but rather the pause after the beat. Kind of like a very short vibration spurt or something like that. If you have them or pacs which are extra beats arising from the atria you will continue to have those after the ablation but there are those here who have svt and don't have the ectopics so I wouldn't worry too much about them at this point. But if you are feeling any weird flutters or skipping feelings you may have them as well. I kind of wish I was informed about them before hand so I wasn't taken by surprise but they have calmed down enough now that they aren't making me feel sick.
Well, it is good to know you don't have afib, that is the more troubling svt because it carries the risk of stroke and is harder to fix and more likely to come back. For the other svts there is a much higher success rate of around 98% so really good odds that it gets fixed for good.
I had no idea about pvcs....thanks for the explanation. I don't think I have any of those, but tbh I'm not sure. Whenever I've gone into SVT, just before i have felt like a few very fast beats followed by a slight pause and then a big thump going into tachycardia. I don't think I'm expressing myself well... Sorry! But thanks for making me aware of that and I will ask my cardiologist about that.Do the pvcs happen very frequently to you now? Do you feel unwell with them?
Wow...$50 000! Even $4000 is expensive to have to pay out! Over here our tax contributions cover our health services so I won't have to pay for anything and the Heart Institute I go to is amazing, I've heard lots of good things about it. The problem in the UK is with waiting lists. I've been on it since last May and in a way I wish I could have had it done straight after all my troubles 10 months ago. The cooling period has been too long! But in a way it's reassuring to think that I'm not top priority and that I can wait. I'm sure there are a lot of more poorly people than me who need procedures done.
I 'm learning so much fromthis site! I'm very grateful, thanks again
You could have pvcs or pacs if you are feeling some sort of a pause or thump before the tachycardia but it will be more apparent once the ablation is done. I can't say whether I have more or less. It seems like more, like the tachycardia would keep them at bay but I wasn't sure what I was feeling and I was having a lot of sinus tachycardia that may have masked some of the pvcs. I had a holter in 2008 that registered only 7 pacs and 7 pvcs the day I was wearing it. It seems most days I have more than that but I can't say for certain that what I was experiencing the day of the holter was typical for me. The doctor seems to think I will stop feeling them after a while so it may be I was having more most days but just didn't feel them. The reason I stated I wish I had known about them was they went crazy bad on me about 5 weeks after the ablation. For about a week I was having probably around 15,000 a day and they were making me very sick. It was hard to function but they have since calmed down quite a bit. I have days were I don't feel so many but most of the time I probably feel about 50 to maybe 100 on a bad day. So they are tolerable. You do have to accept them and just get use to them because there isn't much they do for them. I would say if pvcs or pacs are what is triggering your svt and you have your svt rarely then you may not have many of them at all and shouldn't have anything to worry about. I was having weekly episodes, I had 7 the week before the ablation so things were already crazy for me. Maybe it is a good idea you try the ablation before things get worse. If it isn't costing you anything then it might be worth a shot because it isn't going to go away. The doctor won't even attempt to ablate anything unless they can spur on an episode so no worries about complications in that respect. Well, I am not trying to talk you into it but something to think about. Take care.
Thanks Michelle....7 in a week, wow, poor you!
What do you do when you feel the pvcs or pacs? Do you just continue what you're **** or do you stop for a bit? Glad you're doing better.
Also good to know that if they can't bring on an episode they won't ablate, I hadn't thought of that.
I pretty much try to ignore the pacs and pvcs but it is hard to not notice them. And I am trying to work on my stress and anxiety which seem to fuel the fires so to speak for them. Luckily for me once the adrenaline from the stress has passed the ectopics will calm down considerably. Mentally I still think every time I get one I am waiting for my svt to kick in and it doesn't but my mind is a bit preoccupied still focusing on them. I do think eventually it will get bored and move on. Maybe that is why my doctor said I would stop noticing them after a while. Maybe it isn't so much that I won't feel them but I will stop caring and not think about them and hence not notice that they are happening consciously. I guess time will tell. I am only 6 months past my ablation and it is only after the ablation that I became aware of what they were so I am sure I will adjust mentally. I had a stress echo and a holter in 2008 that came back normal. I had an svt the day before of all the rotten luck but not the day I had the holter so I didn't even question the normal results but just this past summer I requested a copy of the holter and it showed a handful of pacs and pvcs. From what I understand doctors aren't very forth coming about them because they know we will just worry and obsess about them so they think ignorance is bliss and they are probably right but when I did become conscious of them the last couple of years and I asked what I was feeling to a number of doctors I do think someone should have said something but they didn't so I was a bit taken by surprise by them but I am adjusting so its all good. And I am lucky in the fact that some have them crazy bad all day long. Mine are manageable. Anyways it is possible a few of them showed up on your monitor results but you weren't informed. Unless you have so many in a row or close together they are making you sick they really aren't of any consequence to your heart's health so I can appreciate the philosophy doctors hold about them. Ok talk to you later.
"....I wore a heart monitor for a week about 2 years ago and it didn't rgister anything particular. Would it have registered any pvcs or pacs if I'd had any?"
Most "long term" monitors are programmed to auto record, sudden changes of heart rate, such as found in VT and SVT. I usually won't record PAC's or PVC's unless a number of them occur in a row. Let me clarify the recorder's operation:
Lets say you wear a monitor continuously for 96 hours. That entire amount of time is not preserved on the recorder. The recorder is constantly recording your heart rate, but has a limited memory. Let's say 30 minutes. Although it's always recording, data that is 30 minutes old is recorded over. IOW, think of it as a 30 minute looping recorder. New data is going on the loop as old data is being recorded over. When an event is triggered, the recorder commits a slice of that 30 minutes to one of usually three memory slots. In doing so, it includes some time before the trigger as well as an amount of time after the trigger. In this way, the analyst can not only see the event, but also see the initiation of the event. The way a typical recorder is set up, unless you manually trigger an event ie. press the record button when you felt a PVC, the monitor will never record it automatically. Hope that explains it.
Thanks tom you've expained that very well. I wore a device for a whole week thinking it was recording absolutely everything, but now it all makes sense.
Michelle..I know what you mean about stress. Since I was really poorly 10 months ago I've really made a big effort to chill and not get worked up about things. Sometimes it's inevitable but, for example, my mornings are usually quite stressful trying to get 3 kids ready for school. Wheras before I would be rushing about and getting worked up about missing socks etc now I take it all in my stride and tbh I think it helps me not to get the adrenaline going. Maybe trying to ignore your pvcs might help in making you forget them...just a thought:)
BTW how soon after an ablation did you get back to normal life? We've been planning a holiday for some time and thinking of going about 2-3 weeks after me ablation. It would involve a plane journey..am I being a bit keen to travel so soon?
You should be fine. I had mine done on a Thursday, and went back to work the following Tuesday, driving 50 miles each way. On Thursday, 8 days out from the procedure, I drove 250 miles to be with the family for US Thanksgiving Day. On Friday, I did some light rink skating with my son who also skates. They were easy laps and very leisurely. Withing 3 week I was back to full strength and except for a tender thigh from the hematoma that drained out into my leg. By that point, I had also been discharged by the EP who told me to go celebrate with a double espresso in the coffee shop across the street. That's about as jovial as my EP got.... So 2-3 weeks should be sufficient unless you a plan skiing or mountain climbing vacation (or holiday as you say there)!
My doctor had me hold off any strenous exercising for 5 days then I was cleared to go back to my normal life. I felt short of breath for maybe a day or two but bounced back physically very quickly though I couldn't go full out on the eliptical for probably 3 months but see no reason you can't go and enjoy your holiday. You will be amazed at how something that seems like a big deal is really not that taxing on you. Well I should say odds are for most it is a super easy procedure. You may feel a few pings and pangs here and there but you really should feel pretty good within a couple of days of the ablation.
I know exactly what you mean about the adenosine (*****). I have had PSVT for about 3 years along with PVCs/PACs etc. I only have about two episodes a year but I was only able to convert myself once. I have had the Adenosine half a dozen times and I hate it too. I would like to get an ablation but being here in the US with no health insurance, it is cost prohibative for me... its been about 6 months since my last episode. I never heard of it just "going away" but it sure would be nice if it did! :)
I don't think I could ever have a double espresso Tom! I wouldn't be brave enough.Coffee shops are the enemy;)
Elli, I totally agree with your thoughts on adenosine and I'm so sorry to hear that you can't get an ablation beause you have no insurance, I'm not too sure how medical insurance works, but good to hear you've been ok for 6 months.
Michelle...I love what you said about' how something that seems a big deal is really not that taxing on you'. I do hope and pray that you are right. this past year has been a tough one.
Although I've been episode free for 10 months, I sometimes feel like there's a black cloud looming over me. I'm scared of making plans and doing new things in case I get an episode. Reading the positive comments here makes me more confident and ready to face this big challenge, probably the biggest I've ever had.
I am also considering an ablation - will be 47 this year and have been experiencing issues since I was 12. I have been on medication full-time for the past 4 years. Before that, I was on medication only when pregnant because my heart rate would hit 220 and wouldn't convert. During each pregnancy (3), I ended up in the ER being hit with adenesine - YUCK!!!! I have never had success with valsalva, carotid massage, or any other thing that was supposed to convert. Generally just lie down on my left side, breathe deep and wait it out unless it goes for more than 15 minutes (my cardiologist's timeframe). Even on the medication, I do have times every day when I feel like my heart is trying to act up. My sister went to a cardiologist specializing in EP studies (her situation is different from mine) and he told her SVT can be dangerous, so I am also going to see him in a month or so to see what he says. A little nervous, as my mom had an ablation for another heart issue (we all have something!!) and she is pacemaker dependent. Anyone know the likelihood of being pacemaker dependent from an ablation? Maybe different depending on the reason for the ablation????
SVTs aren't actually that dangerous in an otherwise healthy heart. That said, over time if the episodes are persistent or one lasts too long it can wear the heart out. A healthy heart will generally recover from a long episode but over time if the svt is not controlled as one ages they do run the risk of developing congestive heart failure so if you are having frequent episodes that disrupt your life an ablation may be able to cure you of your svt. Depending on the type of svt you have success rates are upwards of 90 - 98% with maybe a 2% complication rate so very good odds in your favor. Afib is a little trickier as well as wpw but in general the EP takes every precaution to ensure that no blocks are created when they do the ablation. The biggest risk is for those with avnrt. If the good pathway accidentally gets ablated it could render the avnode obsolete and then a pacemaker is then needed but again they have made advances in doing ablations and are much better at keeping this from happening. If the accessory pathway causing the problem is too close to the good pathway the EP simply won't ablate and then you have the option of getting a pacemaker but the chances of that are rare. Do you know what your mother was ablated for? In any event, it sounds like your svt is bothersome enough that you are on meds. If you want to get off of them consider trying an ablation. Obviously it has to be your choice but again the EP will do everything in his power to keep you safe. Take care and keep us posted on how you are doing.
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