Does this situation mean the ablation hasn't worked?

[nikonBlue]

hi all,

I had an ablation a year past March and for the past 5 daysI've had the 'bag of worms' feeling which has been totally relentless, 24/7.

Is this indicative that the ablation hasn't been successful? Yesterday I was sitting doing craft stuff with my 8 year old great- grand daughter and on 3 occasions within about 40 minutes I honestly thought I was going to pass out and I'm now a wee bit anxious as to what's going on.

This constant fluttering feeling, and my heart at times thumping as if it's trying to escape, isn't a nice feeling at all and the thought of this continuing is not filling me with positivity!

I turned 70 in June and I'm coming up to 9 years post diagnosis for breast cancer so I really don't want anymore upheaval with my AF situation.

Any advice would be welcome folks....

stay well all,

Blue

[jeanjeannie50]

Hi nikonBlue

I think you need to bring this to the attention of your GP or EP if you are still having the bag of worms feeling. Another option would be to dial the 111 NHS number to ask for advice, they may send paramedics out to do an ECG and find out exactly what your heart is doing. Another thing they could do is give you an appointment at A&E.

Don't suffer in silence please. I've had that bag of worms feeling but not for as long as you have, so certainly know how worrying it is.

Let us know how you get on please.

Jean

[CDreamer]

No it’s not a nice feeling but unlike cancer, it is unlikely to be immediately life threatening. You ask a question we cannot answer as you need to get an ECG when you are feeling like that to determine what is causing those sensations.

Do you have a smart watch or Kardia which would have the facility to take your own? If you are that symptomatic then you need to go back to your doctor but the more information you can provide, the more likely you are to get answers. How long did the incident last? What was your HR & BP? Is the only time you have had this happen?

Many people find that ablation is temporary relief and go for multiple ablations. It’s not that the ablation hasn’t worked - it obviously did for a while - more that you may have healed and/or developed further rogue pathways.

AF is a long term, often chronic condition and unfortunately some cancer treatments are known to trigger AF and other arrhythmias. Better to get medical advice sooner rather than later before arrhythmias establish themselves.

[nikonBlue in reply to CDreamer]

Hmm,

I realise now about the rogue pathways presenting. I have felt fine for all these months with little or no 'worms' annoying the living daylights out of me, but all of a sudden I'm back getting the dreaded fluttering etc and it's not leaving me alone!

Ah well, it is what it is eh?

stay well

Blue

[DawnTX]

it takes several months to start to heal after an ablation or anything we have done. It could just be that or unfortunately, it could be that it missed the mark. I don’t call it fail, but my EP told me you could be just a millimeter off ended is not going to work. If it works, it doesn’t fail, but just know you could have another spot pop up right beside it. I think of it like a string of Christmas lights where one bulb goes out you fix it but then another one and another one goes out. That is the problem with a fib because there is no cure. These are just Band-Aids temporary giving us a break. Some people , have it last a very long time before they get a different one? I had one last six months the second one a year before I developed another area. you will have to give yourself a chance to heal. You may not be feeling pain from the fib or flutter but that doesn’t mean you’re not still healing. Even with a pacemaker you get the feeling of flutter or a fib at times the differences it can no longer damage your heart. A fib is a horrible little monster and at least for now you are going to have times often on the rest of your life. It just is what it is. Again remember we are all different so there is no answer that fits everyone. I would let my doctor know. It might mean a change in medication or strength many other things so if you haven’t reached out to him, you should. When they do hit the mark just right, it is wonderful to go without a fib for a while. All of the things they do for us and to us are just giving us relief.

if you meditate or anything, I would suggest you do so because the calmer you are the better you will feel. My common advice these days is get out of your head about it when you speak to your doctor. That means just don’t keep dwelling on it. Obviously if you have pain, etc., you call your doctor or whatever it is that you’ve been advised to do I can’t tell you no one can without you being checked if it is something or not. Best of luck.

[momist]

I had a couple of AF attacks 16 months after my ablation, but nothing since then for a period of ten months now - is that a failure? I don't count it as such. I don't believe that there is a 'cure', but I'm very much better now (AF wise - other problems discounted).

[Singwell]

I had 19 months free of detectable AF post ablation, then a short one off, followed a couple of months later by a flurry of episodes. Check your other systems is my advice - also any changes in your lifestyle or situation. In my case it was stress due to overwork plus financial concerns and my TSH had doubled (I'm treated for hypothyroidism). I saw my EP privately in March and he did tell me - with older patients it's natural for fibrosis to occur where the scar tissue is formed for the ablation. Apparently this is one reason why things can start up again.

In my case, reducing the stress and treating the thyroid have improved things. Although I don't think it's gone away completely- I get short odd moments every so often. But not enough to bother me.

I'd get an ECG done If I were you. Something has changed. Can you go back to your cardiology department?

[nikonBlue in reply to Singwell]

I saw my GP yesterday and although she is referring me to the cardiologist she isn't particularly worried. She is more hoping to get to the bottom of the awful breathlessness I've had since the ablation last March. I get really sharp pain but I've been told it's NOT to do with my heart so what do I do I ask myself? They are the experts. I just hate feeling the way I do recently. I'm not one for unduly worrying but it's so exhausting trying to rise above the 'bag of worms' and the breathlessness. I'm trying very hard to use some weight as well, I'm not huge but I know I could do with using some and am hoping that helps.

Oh the things we have to do eh?

Take care all,

Blue

[CDreamer in reply to nikonBlue]

Have you had an X-ray? Severe breathlessness at rest is something that should be concerning your GP. Mild breathlessness on exercise, especially on things like walking up inclines is not uncommon.

Would you know what your VO2 is? Again a smart watch will give you this figure. Athletes use this to measure how effectively your body is using oxygen. When I was experiencing breathlessness following ablation and because of autoimmune condition causing muscle weakness I was referred to firstly physiotherapy and then pulmonologist. The physio was by far the most productive as by using exercises to strengthen diaphragm.

May I suggest looking at breathing exercises, it’s something I have to do on a daily basis to reduce breathlessness and strengthen core. If that has no affect then push your GP for further investigations.

[nikonBlue in reply to CDreamer]

Thankyou for this and yes I will try breathing exercises although I've used this for the AF episodes for years now and it did work. I didn't have any of this breathlessness until after the ablation. I'm due to have a CT Angiogram which terrifies me again....me and needles just do not gel!! So hopefully this will alleviate any concerns. I've no idea about V02 is but will ask Mrs Google!!

Many thanks again

Stay well

Blue

[Singwell]

The only thing I can suggest re the sharp pain is - heartburn can do that to you, also a hiatus hernia. Sometimes is is nerve pain. When I was still.under the arrhythmia nurse she talked me.through the different sources of pain - muscular, nerve and Cardiac. It helped me to manage. The breathlessness sounds worrying though. Do you think you have water retention?. Have you been screened for pneumonia? Both the pain and the breathlessness might be linked to something like.that.But hey - I'm not the medic. Keep prodding your medics until you get an answer. We have to self advocate.

[nikonBlue in reply to Singwell]

hi, heartburn isn't something I get and I take medication to prevent another medication causing it....if that makes sense.I also take Bendroflumethiazide but have notice recently my ankles are swollen at the end of the day and I never had that before either.Pneumonia? I had that twice in a year a few years ago in fact just after I was diagnosed with the AF. Hmm! Make you wonder eh?

I will get this next CT Angiogram done soon I expect and see what transpires, hopefully nothing bad but I'm a bit fed up with trying so hard to be well yet this breathlessness stopping me from doing stuff. I'm not good at doing nothing....I like to keep busy and I won't stop just because of my age. (70 in June)

Thanks very much and stay well

Blue