Advice for up-coming 4th ablation
Posted , 8 users are following.
Some background information, I am female, 53 years old reasonably healthy except for the SVT.
I had my first ablation in January 2016 after probably 15 years of symptoms. When I originally had these 'episodes', as I used to call them, they would last 4-8 hours with a rapid heartbeat with all the usual symptoms. I would only get them once a year so didn't really take much notice of them until they started becoming more and more frequent a couple a month by this stage.
I went through the hospital system and was put on Sotalol and eventually put on the list for an ablation. At this stage I was being treated for AF. I had my ablation for AF which appeared to be successful but I was then told that while they were treating the AF they saw that I had an SVT but because it was so close to the AV node they could not ablate as it would risk damaging the AV node leaving me pacemaker dependent.
After the ablation I was never symptom free and within the three months after the ablation i was taken in to A&E almost every other week with SVT that would last hours. I tried all the manoeuvres but unfortunately none of them worked. During this time I went on holiday and ended up in the local A&E department , making sure I had the translation for Adenosine ready to hand before going in.
On my return I had my second ablation they did warn me of the possibility of destroying the AV node but my Consultant was confident he would be able to ablate without this happening. Afterwards the doctors were very happy with the way it all went and told me they had managed to ablate most of the SVT except for a small part that was just too close to the node but that it should not cause me any problems.
After the ablation my medication was stopped and straight away again I started to have attacks Within the three months they were back as strong and as long as pre-ablation. I was given a week event monitor, I handed this back on the Thursday afternoon and Friday evening I had a call from the hospital as they were worried about the attacks they had seen and told me to go back on my medication immediately and that they would arrange with my consultant to put me back on the waiting list for another ablation.
So last November I had my third ablation where the remainder of the SVT that they had been unable to ablate previously was completed, along with a new AF ANVRT and AT. Afterwards I was told that they could not completely ablate the new one they found but about 95% of it so that should be enough to kill the pathway.
On returning home the symptoms recurred and have been increasing in frequency and length 2 1/2 hours last Saturday. Also for about the past 4 months they seem to be coming during the night. I wake up and then within seconds it starts.
The attacks leave me feeling absolutely wiped out especially as they now interrupt my sleep. I am able to use the manoeuvres to stop them which did not work before and usually takes 30-40 minutes except on the odd occasion but I feel now I am at the point where I can't cope with all this anymore. I work in a college and have been taken to A&E by ambulance, I am now exhausted most days as I am having attacks weekly with smaller ones of 2-3 minutes daily.
0 likes, 27 replies
julie62748 caroline09713
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caroline09713 julie62748
Posted
Hi Julie, Yes I am really fed up at the moment nothing seems to be working and frequent SVT and everything else that goes with it. The doctors actually mentioned after the first ablation that I would end up with permanent pacemaker but now coming up for number 4 I don't feel any further on and just want this sorted now. It is very hard finding any info on people who are living with a permanent pacemaker. I just wanted to find out from someone who is living with it rather than the doctors who just make it sound so gloomy.
Glad things are working out well for you though and long may it continue!!
julie62748 caroline09713
Posted
I do have a permanent pacemaker but it only operates when required. Killing the AV node seems to me a last resort after trying everything else including a pacemaker that only works when you need it.
caroline09713 julie62748
Posted
yes a last resort is what the Doctors are saying. The pacemaker you have now does it bring your heart rate down when you have a SVT attack? As that would seem a less drastic action.
julie62748 caroline09713
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Lolasmom julie62748
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caroline09713 julie62748
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Hope things improve for you too, very soon.
julie62748 caroline09713
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Hi Caroline how are you ? The advice I received from two different EP's was one does quite a severe ablation, a full circle around the affected area, the other does spot ablating. patches where the problems occur which they can see as they operate. The one who does the more severe ablating claims his patients do not have to go back for a second go.
julie62748 Lolasmom
Posted
Sorry slow to reply I can feel the adrenalin kick in at any time slightly related to mild pressure or rushing ( not that i am an anxious person). I have now gone back on someone's advice to regular Metropolol to keep the adrenalin (and heartbeat) more stable. 25 MG morning and night I do not have any side effects and it appears to be working.
Lolasmom julie62748
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caroline09713 julie62748
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Julie, I am good thank you, been busy with my Grandson all weekend and loving every moment!!
Had another 2 attacks Saturday night with 5 minutes between them but managed to stop them with the manoeuvres after about 45 minutes.
I am not 100% sure but from the information I can gather, I think my consultant just ablates the spot where it is triggering, so that might be another thing to ask when I have my appointment. I am going to have to write all these things down otherwise I'll forget to ask. Thank you, all these bits of information are very handy to know and be able to ask about.
diane21732 caroline09713
Posted
Caroline, I know what you're going through. My first and only ablation did not fix the problem. I opted not to have another. They have put me on Diltiazem, which is a calcium blocker. I started out a 240 mg in the morning, but had to add another 120 mg in the evening to finally do the trick.
The only time my SVT kicks in now is 1. when I have caffeine. Even some decafs (like Starbucks) and some decaf teas start it up, so I've gone to herbal tea or a weaker decaf. and 2. When I make certain movements. Bending over to pick something up will trigger it and sometimes reaching up high.
Pay attention to those two things. Since yours comes on at night, it may have something to do with the position you are lying in bed, since certain positions do trigger mine. You may need to sleep in a more upright position.
Although, from reading everyone's comments, there are several things that can affect it.
Good luck. I hope you find some relief.
Diane