Hi all, I'm due to go for my 3 rd ablation next Wednesday, but having second thoughts about it.
My two previous ablations did not work and just caused gastric problems which lasted 9 months, after having an endoscopy and visiting another cardiologist I was lnformed I had gut inflammation, has anyone else had a similar experience to me, I have the most terrible fear of being sick and don't think I could face that again. My cardiologist has strongly advised me to have this done , your input would be appreciated ,
Thanks all
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bev2015
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You will get over being sick but if your heart continues to fibrillate it could deteriorate to your disadvantage. My view is if the EP says do it then go.
Thanks Bob, I know I will get over being sick its just I can't be sick like I was last time, it went on for 9 months I lost too much weght and still had the eptopics anyway just wish it was a straight forward ablation x
Its a difficult one Bev. Tough call when you have had a bad stomach experience such as this. I cant imagine your EP would be suggesting a 3rd one if he thought you would be further compromised stomach wise. He clearly thinks another ablation is of greater need for your future heart health.
Stomach issues are awful I know and I really sympathise with you on this. Have you asked how long your stomach issue might last and if there is anything to be done to help with that and minimise the issue for you.
If a 3rd ablation can give you long term heart health then it is well worth considering.
Can you get support from your GP or your EP's team regarding your stomach concerns, surely there is someone in the team able to help allay your concerns in that respect. Dont suffer in silence let them know if you haven't done so already.
Thank you Dee, the last time I was told it was my imagination and was referred to mental health team, it took 9 months to prove I wasn't going mad, I am so afraid this time round,
No my stomach issues are due to hiatus hernia which sets my AF off and i suffer terribly at those times. Sorry you were not believed its a bit much referring you to a mental health team. I assume they were trying to support your concerns about your stomach rather than thinking the issue was all in the mind, surely not!
I really do understand your concerns please ask for support with your medical team you deserve the very best all round care. Sometimes the medical profession compartmentalise us rather than treat the whole person.
I do hope you can make a decision which is best for your overall health. Big hugs.
Thanks for your reply Dee, the doctors originally said I was suffering from anxiety, I could not get them to understand that I was only anxious that they wouldn't listen, I have just spoken to my go and he has advised that I go as taking magnesium ( as some have suggested on this site is not an option for me) seriously thinking of cancelling op as have no faith it will work going on the past two attempts xx
In view of how things have gone in the past, are they not going to watch you just that bit more carefully this time? Your consultant must feel that the outcome is likely to be better if you go ahead or he would not so keen for you to have the procedure.
Well I have told my surgeon of my concern and he said he couldn't guarantee that it wouldn't happen again.
Mine unfortunately is not in an easy place and so takes a long time to do, and also once ablated comes back again, my surgery last time took 5 hrs, I have no idea what they will do differently this time.
I am under a different surgeon and a different hospital this time round
Mmm. But if you don't give it a go, what else could move you forward? You know what they say about third time lucky ...
I note you've used the word concern. I hate the words anxiety and anxious. Concerned I think is far better and a patient with concerns is in a far stronger position than one who's merely anxious.
I do hope you will find the way through the next few days and come to a decision that you are comfortable with. Oh for a crystal ball so that you could know how it would go and which way would be the better. Probably not going ahead might seem easier in the short term, but would lack the long term benefits.
Thank you for you kind words.I wish I could be sure of success, maybe a crystal ball would help lol, I have read so many stories and quite often ablation doesn't seem to work, wish they could do a different procedue, I will give it some thought . thanks again
I was told I need an ablation and there is a 2 percent chance of having a stroke so now I am affraid to have it done. Have any heard of someone having a stroke after ablation
No I haven't heard of anyone having a stroke or worse after an ablation. I have heard of a lot of successes and partial successes and the occasional one that hasn't gone so well. I agree it is scary but on the other hand the success rate is very high and in spite of the risks I would not hesitate to have another if it could improve my state of health. Procedures and operations are never risk free and nor is crossing the road.
It is important to understand that they tell you these things to protect them in law from being sued in the very unlikely event that anything did go wrong. There is a risk in anything we do even if we stayed in bed all day and did nothing. There is a risk in NOT having an ablation but have they told you that? Probably not because doing nothing doesn't make them risk a law suit.
Trust me when I say I am a devout coward but still had three ablations the last of which sorted me out and worth every second of being in NSR.
I had paroxysmal AF which laid me pretty low when it hit and was becoming more and more frequent and persistent as it always does. Had my first PVI in 2006 which made things if anything worse and my second in 2007. That worked for 9 months but I am so good at mending things that the pathways found another route so I had my third in 2008 which has been successful to date. No arrhythmia drugs only warfarin which I chose to be on for life. To use a phrase my boys use "I was bricking it" every time and since I live in Devon and had treatment in London. each time I got on the train I wondered if I would ever see my home again but I would do it at the drop of a hat if I needed to again and my wonderful EP was prepared to try.
No I never had any stomach problems other than wind and some acid refux for which I took lanzoprasole.
Oh Bob, sounds like you've had a rough time of it too, I really hope all will be good for you now and you will not need to go again, you don't sound like the kind of person to
' brick' anything , Thank you for taking the time to talk to me and give me your views, I will give it a lot of thought over the weekend take care, I will talk to you soon x
Bev, just to be pedantic it isn't surgery and it isn't done in an operating theatre by a surgeon. It is a procedure done in a catheter laboratory by an electrophysiologist and no surgery is involved. Personally I would rather have ablation than go to the dentist.
I do understand that, but my concern is not the procedure its the after affects of the ablation itself . I have had two cholesteatas removed from my head , that was major surgery and I would rather have that dome than an ablation as after the black eyes and bruising went down there were no side effects
Can't offer any advice,other than go with what you think is best for you. Sending positive thoughts. Good luck
Good luck with this, I think like those of us waiting for our 2nd 3rd or whatever you will be fine, it is a shame about the sickness, however the thought of something worse if it is left is also not a great thing.
My stomach has been affected by my ablation. Not as bad as yours but lots of bloating and heartburn. I am 18 months post ablation and this has now settled down - in the main. It is also looking like I may need to have a second one as had a couple of very short AF episodes recently.
Like you I am hesitating. I have been reading on here about lifestyle changes and how some people seem to be controlling it in this way. (See grandma's posts and other recent research) . I would love to control it in this way but not sure I have the self-control!! Perhaps you have??
Thanks for your reply Marie, its the gastric problem that's putting. Me off, i have called the hospital where I am having the procedure done and am waiting for an arrhythmia nurse to call me to answer dome ofy concerns x
Good luck with what ever you chose but here is my two pennies worth. My view is go for it for all the usual reasons but in addition because you are under a new EP in a different hospital.
I am fortunate that I have an excellent consultant EP who was very open when I asked him to be last November. I didn't know anywhere near as much about AF, etc as I do now. My cardioversion had failed to keep me in NSR and I was back in Persistent AF. I asked him to be fully open about the options. He told me drugs were NOT an option except Bisoprolol to keep rate down. He said that catheter ablation was the only realistic option I asked how many times. He said that in my case he thought that there was no chance that it would work first time and only 60% to 80% chance the second time so three ablations were quite likely.
On 10 Mar I stopped Simvastatin because of problems with liver function (quite a bit out of range). I had my first ablation on 30 Mar but went back into persistent AF less than 72 hours later. Now my SpO2 levels are up, my health has improved and feel improved, less cramps, etc even though I am back in persistent AF.
Some aspects are due to one or possibly both of ablation and stopping simvastatin. However one thing that I am putting 100% down to the ablation is the improvement in my stomach. For a few years and long before starting the simvastatin I suffered form stomach pain and diarrhoea and if I got away with it three times a week I thought that I was lucky!!! Also I tended to be very loose. However now if I get it once a week that is tops and it is much more "normal". Therefore the AF was affecting mu stomach and digestion. I don't know if this linked to the vagal nerve but my gut feeling (pardoning the pun) is that the AF was affecting the vagal nerve though I have not heard of this.
Thanks for your reply Peter, its funny how you should mention the fact you have digestive problems, I have IBS and can go from one extreme to the other, never thought ablation could help with other symptoms. I also suffer with vestibular imbalance a debilitating condition brought on by having had two cholesteatomas in my right ear, I have so many symptoms its hard to know what's causing what, here's just a few
Dizzy, tired,breathless if having to go up and down stairs, palpertations which make me feel quite sick and waking throughout the night, did you experience similar feelings x
Until the last few (maybe 6 months) I had never realised how complex the body is and how parts are inter-related that you would never have dreamed of. Various conditions which would appear to be totally separate interact and cross affect.
One of my various problems was virtually no movement left foot / ankle. Whilst there was some problems to do with muscles and walking gait even extensive physio was not solving the problem. In the end (after quite a few months and many visits and consultations) the realistic assessment is that the combination of my AF and the simvastatin were causing my SpO2 levels to be far too low which then caused problems with lower back muscles (though not apparent) and also problems with other muscles and cramps. The low SpO2 level was causing my tiredness, lethargy and breathlessness. Typically SpO2 level was 89% to 95%.
The interesting thing is that I stopped the simvastatin on 10 Mar and had the ablation on 30 Mar and although I have gone back into persistent AF my overall condition has improved and I am no where near as lethargic or heavy headed!!! SpO2 level now 96% or greater.
The dizziness that I get sometimes after kneeling down or bending down could be AF related but equally vascular related as I had varicose veins removed in right leg 25 years ago and two valves in left leg are shot.
Oh wow, so i'm really not on my own when I say I have other symptoms , maybe this is all connected, I'm so afraid of this 3rd procefue , purely down to my fear of being sick , I have suffered fr this phobia for years, if there was no chance of any gastric problem I'd be there I'm a flash to get this done as I feel do washed out x
Well I could have added a few more but decided not to!!!!
The joke of it all is that when I went for an eye operation last September I had both the nurse on the ward and then the anaesthetist quiz me a number of times was I on any medicines. They both independently said most people who are 60 are on something and I protested no!!! They sure tempted fate!! Some of my other ailments have been pushed into the background for now. It was during that operation that they picked up I was in persistent AF and the general aesthetic exacerbated it. My consultant thought they should have picked that up before the op!!! The one good thing is that they eye op was a 100% success and it is great not seeing double without glasses or having to have glasses with prisms.
You can get them on Amazon and other websites. It is a measure of the oxygen level in your blood. I think most have a pulseometer included but if anyone is in AF they (like most devices) they will give an inaccurate reading.
Hi bev2015....I had the same problem and its taken me 9 months to get it under control too....so I feel your pain and desire not to go down the EP thing again.....There are good medications out there to help you get over the gut thing my gastroenterologist put me on Nexium 40 in the morning and a drug called NIZAC 300 mg in the evening, as I am allergic to the antibiotic to help with the gut problem....it has a name.... gastroparesis in my case....when you have the EP done the vagal nerve is affected in some of us who are unlucky enough to have the sensitivity....I can talk about it sanely now but up until a few months ago I have been terribly ill and it caused me to get depression and anxiety as well. The folk on here have so supported me and encouraged me through my problems.....go have the EP done again if your doctor has advised you...... the AF is much worse than the gut problem....your heart is so important . I can only tell you my experience .....but encourage you to seek some help with the gut problem before your next procedure and have it under control with the help of meds and diet ....look up gastroparesis diet on the web too....... there is one by a DR Jackson it has been a life saver for me. I am pleased to say I have a hiccup with the AF now and then and have a pill in the pocket....flecanide .....just in case......but do still have to deal with my diet and will probably have to for life but the meds are making it easier.....
Good luck and keep writing on here as we are all in this together .....
Jo, I'm so pleased you wrote on here, I could cry for you as I know how bad it is, i need this ablation or something else to fix this problem as I'm so washed out and symptomatic with this, wish I was note confident to go for it, I have made a note of the meds you listed, did they really stop the problem as I was retching constantly for 9 months I was told by everyone it was in my head and that I was anxious , I put myself into the hands of the mental health team as I really thought I was going mad, this was without doubt the worst he of my life .someonths layer I had am endoscope and saw a cardiologist who informed me that ablation can cause inflammation of the gut. This was the very first time someone actually believed me
Hi Bev you are not going mad.....I thought I was too....I also was put under the Mental Health team after being in a dreadful state one morning ....mind you I had other misdiagnosed things to deal with that also was affecting me as well....but I won't go into that here as it has nothing to do with what you are dealing with....one morning I ate my breaky and virtually collapsed into a very distressing anxiety attack. The doctor took one look at me and rang MHT straight away....the team there said it was not all in my head and I definitely had medical problems that needed to be taken seriously.
Just keep trying until someone helps you with this and gastroparesis can be extremely debilitating.....if I get upset or anxious about anything the first thing is my stomach reacts badly and I get dreadful pain along with nausea...and then that affects my heart and my head feels bad too....its a 2 fold sword one affects the other ....I am learning to control it but its a hard thing day to day.....
You need a new cardiologist. Did your Dr. put you on a an antacid after the ablation? Did he tell you why the first two were unsuccessful? Only 10% should need a second.
As soon as I saw your figure of 10% I knew you were way, way too low and I don't know where you obtained your 10% figure from. It also depends on type of AF and where causes are. I have extracted the information from the AFA Ablation for AF booklet:
Although reported figures vary, overall AF ablation is generally quoted to be successful in 80-95% of people with paroxysmal AF and approximately 70-80% in those with persistent AF. However, to achieve this level of success it may be necessary to undergo two or more procedures. For persistent AF, the shorter the time you have been in AF for, the better the results. Many centres feel that persistent AF for more than three to five years has such a low chance of success that they will recommend against the procedure.
Current figures report that approximately 30-40% of people will require more than one AF ablation procedure, and this figure rises to 50% for those with persistent AF. The need for a second or third procedure is normally due to the recurrence of symptomatic AF or the development of left atrial flutter. This occurs in a small proportion of patients in which the fibrillation is abolished but the ablation lesions promote more organised rhythm disturbance.
No I wasn't given antacod until 4 months later, first ablation took 2. 5 hrs, second ablation took 5 hrs and still not successful, I have been told its in the upper chambers but in a difficult place to reach x
Possibly you are talking about atrial flutter as I know that a10% figure is about right for ablation for flutter. Atrial fibrilation, though still successful is not quite as good as that. X
Hi Bev, I know this is an old post, I haven't read all the 40+ replies yet, but just wanted to say I can totally understand your concerns as I am 5 weeks past first ablation and am still off work with terrible gastric problems since the op. I have never been so bad. One gp thinks it is connected whilst another one I saw just laughed and didn't think so and couldn't believe Iwas still off. I hope all went well for you and you are in good health.
I should have mentioned I had a TOE at the same time as my op under a general anaesthetic, transophegeal camera to check for clots. Did you have this too?
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