I had my first appointment yesterday with my EP, an appointment I feel I’ve waited 30 years for and for the first time ever someone agreed!!! He said trying to get information from the various cardiologists I have seen over the years has been interesting, difficult and provided very limited information. He had discovered that I had a firm diagnosis with ecg reading, of PSVT and PAF over 15 years ago but was pretty much left too it after being started on flecainide. He had really worked hard trying to pull together as much information about me as possible. A completely different approach from anything I’ve experienced before.
A few weeks ago I begged to have a holter monitor for a week to try and capture more information before my appointment. They agreed after a lot of begging and crying! On the 4th day I went into AF and SVT!!!!! So for the first time ever the entire episode was caught from start to finish. Rare as hens teeth with this horrible condition as many of you know!
So with this and the various other bits he had managed to find he felt like he had enough information and evidence. He asked lots of questions, was keen and positive.
I had my list of questions and he encouraged me to go through them, he answered them all with honesty and humour. He gave me tissues when I broke down and he talked to my husband about the impact of “30 years of suffering”.
Then he explained that he felt he could really help, he suspects my trigger for AF is SVT as I never have AF without the precursor of SVT. He did a little diagram and explained it all in detail but I couldn’t really understand, that’s where having my husband there really helped! He believes that if he ablates the SVT it will potentially be the end of all this. He was giving odds of between 80 and 90% !!
He was so confident and matter of fact. He then said do you want me to book you in right now, let’s put and end to all this and give you your life back! I agreed!!!!! He called through to his secretary there and then and asked her to rearrange a few things and booked me in for the 25th March for a EP study with mapping available and ablation under sedation!
So after 30 years I agreed to an ablation with a man I spent 45 minutes with, I really didn’t think that my appointment would result in me being booked in for an ablation in 3 weeks. I thought I would need time to mull it all over but I think after so long I just want this to move forward. I’m not sure if I would have agreed had I not read so many stories on this forum, to have all this patient information is a goldmine!
Sorry this is the longest post, I find it so helpful writing everything down here, It’s like a lovely supportive interactive diary.
I hope you are all having a lovely morning and I have a sneaky feeling I’m going to be needing lots more support from you all over the coming weeks.
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Kellyjelly
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It just shows it really is the luck of the draw and possibly the County where you reside..l consider myself lucky as l was in Warrington with a relatively forward thinking Dr.and medical practice..
Your story has made me so sad to think you have not been taken seriously for 30 years and now thankfully you have been sent and EP who will care for you...
Take time out now and give yourself a well deserved pat on the back..
Thank you for your lovely reply. My family asked me how I’m feeling, I’m a bit of a scaredy cat and I think they all thought I would be quite devastated but I said I feel like a huge boulder has rolled off my back. I have been fighting my way through this for years repeatedly being told if I take a deep breath and manage my emotional state better I wouldn’t suffer. I can finally let go of that. Now I can concentrate on being treated for a valid heart condition and even though I’m a bit scared I feel positive.
I asked him about anticoagulants and he said that I don’t need them. I didn’t ask in relation to the ablation just in general. I have PAF, would I still need them??? He seemed pretty sure about it.
I agree with happyJo. Should I decide to go ahead with the ablation procedure my EP has also told me that I would have to be on antocoagulants 6 weeks before the procedure and 3 months after. He said it's not negotiable and he would not perform the procedure if I didn't follow his instructions.
Thank you for your helpful reply. My ablation is or SVT and a couple of members have had the same experience as me, not needing anticoagulants for this procedure. I am going to double check with the doctor on Monday although I feel quite reassured now that it’s normal protocol for this ablation.
Sounds like a great plan but I am very surprised about the anticoagulation as my understanding is that this is not optional for ablation. Where are you having this done and who is your EP Kelly? I see you are in UK
This has taken the wind out of my sails a bit and shaken my new found confidence. I actually brought up anticoagulants with regards my PAF and he said they are not necessary, I don’t understand why he wouldn’t have mentioned it then?
It might be an age thing as a consultant at Stoke UHNM said in his view all men over 70 should be on small dose of Warfarin. Don’t be concerned just ring the Cardiology Dept at the Hospital and ask for clarification they will advise you no problem.
I agree you should really clarify the anticoagulant issue asap.I am in the US and again- here there needs to be at least 4 weeks of anticoagulants before any ablation. Anticoagulants are not negotiable.
Here they do a TOE (TEE over here) once you are on the table and before the ablation starts. It would be a shame on several levels if you got this far only to find out on the table that you are not able to have the ablation.
Aside from the let down it is not the time to have to make any decisions about your treatment in case they suggest something else.
I'm also wondering why before suggesting the ablation on your first visit he did not offer you a less invasive procedure (a trial on meds) before moving straight to the ablation.
If it were me I would have felt better if I had been told to go home, talk with my husband, and think it over. Then see you again when you had time to process everything he told you.
Sometimes we make decisions based on our gut feeling and things turn out well. I often do that. But my gut feeling tells me this was too quick. He almost sounds too good to be true- a smooth approach, taking time to really listen to you-something you had not had before. And if I were in that situation I might be so happy to find someone I felt understood me I might also agree quickly to his suggestions.
If I were in your shoes I think I would ask him for a little more time to process his information-maybe do some research. I would not allow myself to be rushed. If he balks at this-another red flag.
I have had an ablation and a pacemaker in 2016 at age 72 and I am fine and stable. This might be the answer for you, most likely it is, but I would move a little slower. You can't change your mind or take another approach once you're on the table having the procedure. So take the time to be sure this is what you want to do.
What does your husband think? Is having surgery right away his decision or yours? Hard questions but take time to feel certain about your decision.
Again, the red flag is the cavalier attitude about skipping the anticoagulant phase. I'm a retired nurse and I wouldn't have had my ablation without prior anticoagulants. Also when tissue is being ablated there is bleeding taking place. Not a lot but where there is bleeding there is a chance for clots to form at the ablation sites. No anticoagulant-no stroke protection.
There is a saying seen frequently here (US) on tv. Concerning strokes:
"The first symptom of a stroke in 4 out of 5 people IS a stroke."
Sorry to go on and on. I just feel you are being asked to take an unnecessary risk.
Take care. irina
P.S. Let me pose a hypothetical question: Would you puchase a car this rapidly? Ar least you can return your car.
I’m not sure if you have read my previous posts and know how I came to be sitting in front of the EP on Friday. It’s a long gruelling story and I won’t go over it all again but if you have you will see that the decision I have made was really not an impulse buy made by me feeling so grateful to be listened to that I would sign my life away.
I have been medicated for AFib for 12 years with flecainide, it was very successful but in the last few years has been less so. I have had this condition for 30 years and have researched extensively different approaches to managing this condition. I have lost weight, changed my lifestyle and thought frequently about the possibility of ablation.
The EP really isn’t too good to be true, he is just the correct specialist for the job with a very positive attitude and my gratitude comes from the fact that it has taken me so long to get to that point. He really wasn’t cavalier about the anticoagulants, he just said I don’t need them.
My husband is a wonderful supportive man that has never made a decision on my behalf, what a strange thing to ask.
I really am grateful that you have taken the time to point out the real risks involved for me as I approach my ablation, it was a very sobering post to wake up to. It has definitely given me things to think about so thank you.
With regards the car analogy, in the uk we don’t buy or health so I don’t see medical decisions as a transaction. And as I sad before this decision wasn’t made flippantly in the 30 minute consultation, it has been 30 years in the making.
Then I apologize for such a negative reply. It wasn't my intention to upset you just to say be cautious.
It sounds like your feet are on the ground and I send my best wishes that all goes as well for you as mine did. And you have the same good long term results.
Really no need to apologise, i completely understand that you are sounding a word of caution and I really am grateful. It is helpful to have the decision challenged, it really made me think. My reply is more an affirmation to myself that I’m confident this is the right decision for me. My family are too worried and want me to feel better, they would find it hard to be as direct as you were so please believe that you have really helped me in the same way that all the positive posts regarding the procedure have.
You too. I have a hard time making my family understand anything medical. My sister and I are usually on the same page but I have a wonderful friend who is very supportive-taking me to the hospital, etc. But tho he is very assertive in other ways, he is a "Listen to the doctor. He knows best" kind of guy.
Not me. My Electrophysiologist is wonderful. When I see him at appts he always says Who's in charge today-you or me? and we laugh.🐱
A year ago I had a procedure where he put a small mesh device in the opening between my left atrium and the atrial appendage. This enabled me to stop taking anticoagulants altogether. I had to get off the coumadin slowly and on the day I had a TEE and was told everything was fine I took my last coumadin pill in his office with a glass of wine.
Wonderful positive outcome after being brushed aside for so long. Well done for pushing for the Holter monitor - that certainly helped his diagnosis and he sounds like a great physician.
What a successful outcome and what a relief for you to have someone who actually listened to and understood all you said. Best wishes for your ablation.
Good to hear you have been heard and wish you all the best for the 25th
I haven’t posted anything here for a long time, but regularly keep up with you all.
I was diagnosed with PAF in October‘17 and for about a year everything was kept well under control with Bisoprolol, Flecainide and Xarelto with very little side effects. My story was quite a long one before diagnosis, all ECG‘s normal even getting to the point when the doctor sent me to a psychologist !!
The last 2 months weren’t so good, meds not doing the trick anymore and in persistent AF. I saw my EP on February 20 and had my 1st ablation yesterday March 1st.
Admittedly this is in Switzerland with a private insurance and things tend to move on quickly. I had a GA so stayed overnight and hoping to leave hospital in a few hours time. I feel fine apart from a sore and blue groin and a sore throat.
Thank you for replying especially as you have just had your ablation!
To read that you have had a long road to diagnosis that ended up with seeing a psychologist makes me feel really sad. I really hope your recovery goes smoothly and you will feel better than ever!
Be really good to know how you get on over the next days and weeks if you feel up to sharing.
I would add that I would ring his Secretary and check 're anticoagulant,just for peace of mind . He sounds very competent though and should be able to put your mind at rest. I am a fretter so know how you might be feeling!😀😀
I’m a fretter too and this has made me feel worried 🥴 why wouldn’t he mention it? Especially when I specifically brought up anticoagulants for my afib???
I had ablation last Friday. When I got the date for this I also got a date for pre op. Everything is checked & explained to you including the meds. I honestly was so uptight about it but it was fine - would have it done again tomorrow (hopefully won't need to). Good luck and fingers crossed.
Thank you for your really helpful reply. Because I live quite far from the hospital and he booked me in there and then he asked me to have blood tests and MRSA swabs that day so that I wouldn’t need to attend for the pre op assessment.
How are you feeling so far? It’s so reassuring to hear stories from people on the other side of ablation. I hope your recovery is going really well.
Wasn't looking forward to it at all! It's a scary thought. I'd opted for GA - brilliant dreams but can't remember them!!!! It's true what all the 'people who post' have been saying, you really do recover quickly. Small bruise in right groin. Slight ache in chest but that's more or less it. Trying to pace myself and take it slowly - difficult as I prefer being busy!!!. Take care and I hope all goes well for you
I would be very surprised if your EP overlooked the question of anticoagulation before the ablation. Much more likely I would think is that this is not part of his protocol for SVT ablation and that he will do a TOE (trans oesophageal echocardiogram) at the start of the procedure to rule out intracardiac clot.
My husband is getting very upset with me because I specifically asked about anticoagulants yesterday and he said I don’t need them. However I asked before we got onto the subject of ablation so I now think I didn’t ask the right question at the right moment!??!?!
Don't spend the weekend now worrying yourself unnecessarily...I very much doupt an eminent Physician / EP with 100's of Ablations under his belt would be likely to inadvertently forget to anticoagulate a patient it would be more than his reputation or life was worth..He is not working alone there are other Drs and Nurses involved - procedures he will have to follow and boxes to tick ...As Oyster stated he will do a TOE l was given Heparin on the day...
Thank you so much. I think I have got to the bottom of it with the help of Kaz! I’m having an ablation for SVT, he thinks SVT is my trigger for AF so is going to ablate that and hopefully get rid of it all. Kaz had a couple of ablations for SVT and wasn’t anticoagulated, mystery solved and worry over.
He said it’s 1 on account of me being female. I have no other risk factors.
• in reply to
I agree with Hidden about not worrying. You can always check.
I didn't have any anticoagulation (either before or after) for my first ablation which was for SVT although in fact I had undiagnosed AF. This was in 2010 and things may have changed since then. I was 64 at the time and with hindsight am slightly surprised that there was at no time any suggestion of anticoagulation, nor for some years after.
I didn’t really grasp that my ablation is for SVT as he thinks that is my trigger for AF, thank god I took my husband with me who did totally grasp it! Kaz had a couple of SVT ablations without anticoagulants and now you too so I’m guessing that it’s standard. Problem solved and worry over. Thank you so much
If it’s an SVT ablation rather than an AF PVI ablation there may be different requirements. I had 2 SVT ablations and wasn’t on anticoagulants before or after. At that stage though I hadn’t been diagnosed with AF. When I had my AFlutter cardioversion I was put on anticoagulants for a month afterwards and by the time I had my AF and AFlutter ablation I was on anticoagulants full time.
I think you might have hit the nail on the head! My husband just told me that I am having an svt ablation! Even though I understood the concept of svt being the trigger for my afib I hadn’t quite grasped the fact that it’s just the svt he wants to ablate, therefore removing the trigger for the other arrhythmias and hopefully solving my problem!!!! I feel a bit daft now!
Don’t worry. When There’s so much going on it’s easy to get overwhelmed. Sending you best wishes for the procedure. Xx
That's great new I have paf since sept2018 on apixaban and bisoprolol working well but not have a follow up wondered if you have to wait a year would like to know how I am doing still very tired sometime feel as nothing is wrong then other times feel ill could that mean I am in paf not sure
With paroxysmal atrial fibrillation (paf) the episodes come and go. That would explain why sometimes you feel bad and other times you don’t. Do you have a cardiologist at the moment?
I have only seen the hospital when i got took in last Sept have me tablets and that was that being new to it would like to know how I am doing
Was September the first time you had ever experienced atrial fibrillation? How long did the episode last and how did it end? Have you seen anyone at all since being in hospital? Have you talked it over with your GP?
Sept was the first time stayed in for 3days gave me tablets had a monitor put on for 24hour two weeks later said I was not seem a doc to talk it over with
I think you need a bit more guidance with all this. Make an appointment to see your GP and ask for a referral to a cardiologist or better still an electrophysiologist. You really need to see a specialist even if it’s just to check your heart and make sure you are happy with your meds. Who told you the 24 hour monitor showed that you were fine. You could maybe call the ward that you were in for 3 days and ask them what to do next. Please don’t be like me and just leave it all to get in a mess. It is very scary and isolating to be given that news and a prescription and no idea if which way to turn. Unfortunately I think we expect to be followed up after such an event but these days it just seems a bit hit and miss. I’m afraid you have to keep asking until you get to the right person.
I had the 24 hr monitor first and nothing showed up so they had me wear the 30 day monitor and after 2 weeks my SVT showed up...
Thanks for your reply I had a letter saying results were good my heart was in synus rhythm no action to be taken reading people problem on here my are not that bad I do worry about every thing but will goand see doc
That’s good that no action is needed but it doesn’t mean you don’t need to be under the care of a specialist especially as you are medicated. PAF can change and progress so it’s good to be regularly checked from the very start, believe me.
I find that strange if you have PAF, very often it is symptomless and in perfect sinus rhythm.When I was diagnosed by chance by my GP after I consulted her the same day because I had terrible vomiting from an antibiotic prescribed for an infected cut on my leg earlier in the day, she did an ecg because my heart rate was high, and immediately sent me to a cardiologist, the only one available on a Friday afternoon at a heart hospital some distance away, and since I was not allowed to drive myself I had to organise a driver, and by the time I got to the specialist I was in normal sinus rhythm. He kept me in for the weekend and prescribed a beta blocker, with the instruction that as soon as I thought I could be in AF I must go to my GP for an ecg. I kept a check on my pulse and when it happened again, I had the ecg at my GP's and saw the specialist a few days later when he did a cardioversion as I was in AF. The point is I had only been on Warfarin for a week, I continued for another week and changed to Xeralto.I now see the cardiologist every six months for a full examination and review. I am in South Africa, but 6 monthly visits with echograms and stress tests seems to be the way here.
of course, I would b a little scared. Just say a prayer and put your trust in God and your EP. Turn off the worry/ anxiety button on the back of your head!!!🤣
I had my ablation at Texas Arrhythmia in Austin 6 months ago for afib, and was told to go on Eliquis for two weeks prior, but only had about 11 days due to the timing of the scheduled surgery. They said that was fine. It's good to double check so you know for sure whether it was an oversight or intended that you not take the anticoagulant.
I’m utterly amazed you haven’t been treated well in all these years, my brov is booked in for his ablation and it’s after a year of numerous holsters ct scans ecg echo you name it he’s had it, so a massive well done to you I sincerely hope all goes well, sweetheart, thinking of you
Oh thank you so much for such a lovely warm reply. I think that initially my age probably got in the way, I was only 17 when I had my first episode of SVT. 30 years ago a young girl presenting with an occasional racing heart and palpitations was very quickly labelled as anxious. The rot set in and that anxiety label got in the way of everything. It makes me so sad but it’s over now and I am looking forward 😊
I am so happy for you; that you feel you have been heard and that action has been so swift. I look forward to reading your continued positivity and recovery following your oblation.
Gosh I could feel your emotion, it came right out of the page..l.l.i can’t imagine the abandonment and fear this has caused you all these years......what a difference a day makes eh! Andthe right man in the right place......don’t spend a moment of your time worrying about the ablation you’ve had years if worry.......once you get to hospital you will feel nothing but releif go get it over with.......I’m 6 weeks apres ablation, all seems good.......I wish you the success you deserve Kelly,
It’s really strange because although I quite naturally feel a little scared about the procedure itself I feel like all the worry and stress I have felt surrounding my heart problems has gotten less since my appointment. I feel like I don’t have to fight anymore and I can just focus on getting better. I know it sounds odd but the ablation represents validation to me, proof if you like that it’s real.
Wow, 6 weeks post ablation, I hope it’s been an easy recovery for you It’s so great to hear positive stories. All the best and I hope you continue to feel better each day 😊
I cant imagine how you’ve felt....it’s such an emotional stress having this and coming to terms with it, let alone having no back up...I’m in France and was diagnosed in holiday in Spain all dealt with quickly.......the ablation I think , it’s worse the days befire thinking about it than having it!.....a kind of peace comes over you of non fretting once you enter the hospital!!!......not long for you now, try not to fret like I did!.....and everyone will tell you rest rest rest after!!
Thank you so much Sue. I am feeling totally resigned to it, I’m sure as the days go in I will get more nervous but for now I’m feeling hopeful and trying to see it as a day procedure that could really help me.
This might make you laugh but I’m a very reluctant flyer, so when I have to fly I use a little technique in my head that every time I think about the upcoming flight I immediately stop the thought and say out loud, ooh I can’t wait to get on the plane! It sounds silly but it really works for me. I’m using the exact same technique every time I think about the ablation!
I had the same over 30 years of putting up with SVT especially after eating a meal and odd time throughout the day I had my ablation June last year and now no more SVT also eating normally again I would have had it done just for eating better. Just like you I lived with it doctors over the years should have picked up on it, there are many more suffering like we did / do
You poor thing, I’m so glad that you are through the other side now and feeling so much better. It is s terribly difficult situation to be in when you don’t feel believed or taken seriously. Only 6 weeks ago a paramedic asked me when my heart was in atrial flutter beating at 240bpm if I suffered from panic attacks and anxiety. I said no, I only really feel anxious and acute anxiety during an episode , he clearly heard my reply but decided to write in my notes that I suffer from anxiety with possible panic attacks?!?! I have wondered so often why when you are asked about anxiety the answer you give is often not listened to.
That’s why places like this are so important, a safe and positive place to be able to share your experiences and draw from each other’s stories. I am so grateful to have found this forum.
I’m so sorry you had to wait so long to be heard, it’s pretty outrageous really but thank God for your EP.
Keep in touch after your ablation it would be great to hear how you get on.
I had my ablation on Thursday and am just enjoying BodD’s advice of don’t move a muscle for a week!
Thank you for your lovely reply. I definitely will keep updating here, I find it so helpful. I’ve never kept a diary, I’ve tried but it always felt a bit unnatural writing to myself. Writing things here feels like a very supportive interactive diary. I can get all my questions and fears out and then lovely people come along and offer advice and support.
Wow, you just had your ablation, how are you feeling??? How did you find it? I hope your recovery is going well and you continue to feel better every day. Keep resting 😊
Wow it’s took 30 years to be heard well done you for being persistent!! I’m so pleased the Info was finally caught!! You will be fine as you have all the support from this group I know I found it helpful this time last year I was heard and finally something done but my ablation was a slightly longer wait list I think it was from November when it was decided to be done and was done in the April last year it was hell waiting but seeing as ide waited some time what’s 5 months!!
Any questions just ask on here someone will be able to help you.
Thank you so much for your lovely reply. This forum has been my lifeline over the last few weeks, it really helps to hear other people’s experiences.
I’m still in shock that he booked me in there and then and it’s so quick but he said after 30 years of suffering he thinks I’ve waited long enough, Very kind of him.
I hope you found the procedure straight forward and your recovery has been good and it all worked for you.
Hi Kellyjelly, I had an ablation last Thursday. Same as you, the EP thought I had SVT possibly triggering AF. So wanted to ablate SVT and see if he could trigger AF as well and try to ablate that if he could. I came off Bisoprolol 3 days prior, didnt have to take anything else. Ablation was so much easier than I imagined, i was shaking so much it looked my legs had a mind of their own once I got onto the table, but straight away had sedation into my arm and I just felt so relaxed. Didnt feel insertion into groin or any pain. I felt like I could easily have dozed off,but the nosiness was keeping me mostly awake. I felt my heart run fast a few times and a warm feeling when he ablated i think, but never was I uncomfortable. Unfortunately he couldnt fully ablate the last part as too close to the AV node and said for my symtoms and age ( Im 47) he wouldnt risk a pacemaker. He couldnt trigger AF so doesnt think I actually have that. ( time will tell I guess )He took groin leads out, never felt it, but saw them on the table. I was wheeled back to cath lab a bit groggy still and they gave me tea with a straw and panckes. He is happy for me to take Bisoprolol as PIP - i asked after reading it on here Not on anti coagulants as would have to be in SVT for a month for it to be a stroke risk. Im at home watching box sets, groin a bit twingy the 2nd day, pretty exhausted feeing, heart at 100 if i make a quick sandwich,but I feel ok.
Sorry for long post, but I was so nervous at the thought of ablation and I read posts on here which really really helped. Its the fear of the unknown and I would do it again if needed. I have a follow up with EP in 3 months so will have lots of questions for him then
THANK YOU SO MUCH!!! Sorry for the capitals but I’m just so grateful that you took the time to write all that down for me.
Until I met the EP I had no idea that my bad rhythms could all be being triggered by SVT, it was a real huge lightbulb moment for me. To hear from someone that has had the same conversation with there EP is so helpful, honestly.
Your description of the ablation process are so reassuring. We are roughly the same age too.
Your post has made a really big impact on me and I really thank you for that.
Can I ask where you had it done?
I’m wishing you a really good and speedy recovery and lots of hope for the future without SVT!!!! 🙏🙏🙏
Hi Kellyjelly, im glad my reply helped, was afraid I was rambling a bit 🙊 I had it done in Belfast Royal Victoria. My EP was great and the nurses are worth their weight in gold. Although they dont give you any advice about how long to rest,stay off work etc. Thats why this forum is so helpful!
No not rambling at all. My EP was very blasé about recovery, he told my husband I would be fine after a few days. I told my husband that he needs to read the AFA factsheet regarding ablation and recovery. I’m glad I know what to realistically expect when it’s over, I imagine it would be a bit demoralising if you expected to feel great and you didn’t.
Hi Kelly, I was back at work a week after my SVT ablations. Whilst it’s not a walk in the park, it is a lot less invasive than the atrial fibrillation ablation. Hopefully this will fix you and you don’t need an AF ablation as well. I remember how insistent my EP was about how much more difficult the recovery would be from the AF Pulmonary Vein Isolation and Atrial Flutter ablation than the SVT ablations I had previously had. He was right.
Thank you so much again! Your replies are so helpful, that’s really interesting to know.
I’m finding it quite hard to grasp, if when he starts the ablation and deals with the svt He then finds (during the ablation) i have afib without the svt trigger will he ablate for the afib there and then it would I need a separate procedure for that? Sorry if this sounds daft, I can’t seem to get my head around it!
It’s great to see how much research you’re doing. I’m always the same. My husband calls me doctor now because I’ve done so much reading, listening to podcasts and asking questions that I could almost pass my medical exams - not really but as BobD always says “knowledge is power”.
I think after so many years of feeling ashamed and trying to hide it all the time I finally feel like I don’t need to. The only real research I’ve done is ask questions here, I’m really interested in patient experiences. It helps me feel less isolated and more hopeful.
Hi Amanda, so am I. It was northern General in Sheffield and his name is Dr Nick Kelland. I think that he was shocked and saddened that it has taken 30 years for me to see an EP considering I have had this problem for 30 years.
I will test the water for us and report back!!!! Where are you having yours done?
Oho, my old stamping ground. I worked at Northern Gen in the 80s. My husband is from Sheffield maybe we can meet for a coffee (decaf 😁) later this year as we come up from time to time ask his family still there.
I'm in Plymouth, under care of David Tomlinson at Derriford hosp.
Really, how interesting, it was the nicest cardio outpatients experience I’ve had so far. Every single person was kind and reassuring. It would be great to meet up, I have quite a lot of family in cornwall and a lot of friends in Devon so i visit quite often. I lived in the Southwest for many years. We will make a plan when I’m all fixed up after my ablation 😊
I also want to add having read all the responses that I'm sorry the NHS dismissed your symptoms all these years. I am a nurse and I teach year one and year two medical students, I hope we are getting it better now. But you are right when a clinician takes a history they can put their own interpretation on. Like the paramedic did. Not good enough.
There are ILR (implantable loop recorders) readily available nowadays to pick up arrhythmias cos it's sod's law the heart behaves when wearing a monitor.
For me the problem was dismissed when I was very young, that set the precedence for how the NHS dealt with me and also how I dealt with it myself. I am not a completely blameless bystander in all this. I never called an ambulance because I was too scared to bother anyone especially as each 24 hour monitor revealed nothing but a perfectly young healthy heart and I had been told I was suffering from panic attacks that would make my heart race and relaxation techniques would stop them if I just calmed down a bit.
As you can see it was really just years of conditioning by myself and the doctors. The problem is that I knew instinctively that they were wrong and so I became very defensive and felt really helpless and vulnerable but that only seemed to reinforce that I was creating the situation myself!
One of the hardest things is that some friends and family felt certain that I just wasn’t listening to the doctors or not accepting what they were saying because I was embarrassed or ashamed. Needless to say they have been very surprised by the recent turn of events, people don’t tend to have ablation for a panic attack 😂
Over the years I have met the most wonderful nurses and doctors, I am grateful for the NHS and really feel like my story is just s combination of things rather than the fault of anyone or anything.
So pleased for you, I know the feeling , waited 18 years, had my ablation in January and not had an svt since, been taken off all my meds too 🤗 good luck x
I’m so so happy for you! What a relief to have found an EP who is both diligent and skilled with such a wonderful bedside manner!! And an extra bonus that you do not have to wait very long for your procedure. It sounds like you are in very good hands; I cannot imagine living with it for 30 years; mine was only 4 years of ectopics and a year of svt. I had my mapping and ablation on February 15th and feel amazing. And now you will too!!
You’ll have some anxiety over the next few weeks which is entirely normal but just remember that you will likely NEVER have to live through the fear of another episode. They will make sure you are very comfortable and calm (it’s amazing what they can do with pharmaceuticals these days!) and imagine the feeling of a calm heart and mind that awaits you on the other side.
I’m so glad I saw this; it literally made my day! 🙂
And your reply has made my day ❤️ thank you so much.
Wow it’s really not long since you had the same procedure and you sound so positive and full of energy. I thought I would feel really worried as soon as I made the decision but surprisingly I don’t at the moment. I know that as it get closer I might be more nervous but so far so good.
The word diligent is exactly how I would describe Dr Kelland and it amazes me how with the right approach a patient can be made to feel in safe and capable hands, starting to wipe away in 30 minutes 30 years of struggle.
Just in exactly the same way a persons day can be made by the kind words of a complete stranger. Thank you x
I am 4 weeks post ablation and it is the best thing I ever did and I would do it again without hesitation. I suffered with Afib and Aflutter for only one year and that year
was the worst! I am so glad to being on the road to recovery and getting my life back! Wishing you a successful Ablation and speedy recovery. Just make sure to take the time to recover and not push yourself to soon! You will be so happy to get your life back!❤️
Thank you so much! I’m so happy that you feel so much better and that the Afib and AFL is behind you. It’s so great to hear that you feel so good so soon after the procedure.
You will feel so much better after ablation. Just remember that it will take months to heal and that you will still have episodes after, but they do get less frequent. Try your best to relax and rest as your heart has been through a lot, even though you can see any scares your heart needs time to heal. Listen to your body. It will tell you if you are doing to much.
It must be such a relief to have someone take your condition seriously after all these years of being messed around. It sounds from what you say that you were given the impression it was in your head! Unfortunately this is an all too frequent reaction from doctors towards women who have heart problems and it's about time it stopped . Good luck with your treatment and fingers crossed it is a resounding sucesss.
I have avoided mentioning the way I feel about the way women in particular struggle to get a diagnosis,especially concerning arrhythmias as I didn’t want to alienate anyone but I completely agree with you. I read an article a few years ago about the gender bias in length to diagnosis of Atrial Fibrillation and it was shocking and very sad. I do want to reiterate though that I’m sure there have been men that have also struggled with getting a diagnosis.
It is such a relief to be at this point finally, knowing that fight is over. I do hope though that it gets easier for women and they will be listened to.
Not just arrythmias. Many more women than men are sent home from A&E with a diagnosis of panic attack when they present with chest pain to later suffer( and often die of) a massive coronary. The bias against women by medical professionals is shameful. There is little cognisance of the difference in female physiology and how the hormonal system impacts widely the whole body. Up till recently new drugs were not even trialled on women and there is hardly any knowledge about whether women respond differently to men to drugs. I don't care tuppence if I have alienated anybody here by saying this!
I doubt you have alienated anyone on here as many of us are being dismissed as hysterical hypochondriacs 😡
I'm off shortly to do battle yet again with my Consultant who is not understanding how awful my symptoms are, he's a lovely man but just not offering any treatment, I'm not hopeful !
I do hope you manage to get treated. I know what it's like to not get treatment. I suffer from an iatrogenic condition -FADS ( Fluoroquinolone Associated Disability Syndrome). Though now recognised in the US it is hardly acknowledged in Europe despite the EMA recently putting out newer more restrictive guidelines for use of these antibiotics. There is no recognised treatment but it is hard to get the doctor ( mine is a lovely man too) to understand how limiting the pain from constant widespread tendonitis is. Or that my first 2 episodes of afib were provoked by these drugs! They don't get it that the adverse effects can last for years and get worse rather than better - due to mitochondrial damage.
Oh I really hope you get somewhere. It’s funny you use that term “do battle” I said to my brother the other day. It very much feels like Visiting the doctor is like going into battle with your health. Wishing you a good outcome today, take care
Thanks, I won the battle 😅 although to be fair he didn't put up much of a fight. I think because I wasn't going to accept the no treatment approach he knew I was serious and wanted something done, so Im having another echo, an exercise stress test and 2 week holter and depending on those results it will either be meds, a pacemaker or referral to an EP for ablation although he isn't a fan of that procedure. He's a lovely kind Cardio but sadly retiring shortly so I'll no doubt have more battles ahead with whoever takes over but he's leaving instructions and a plan of action, we will see !
I’m so glad that you feel like you took control and managed to get great results! Well done, it takes a lot of energy to keep asking for help, It really does.
Hopefully with the tests you get lots of evidence of what’s going on and that will make the path to treatment decipher easier.
Keep fighting the good fight, you will get there 😊
I feel one rung further up the ladder but still a way to go, just hope I don't fall off when the new Consultant takes over, must think positive and dream of all the things I will be able to do when ectopic free.
You won’t, you have got through today with a good outcome, getting referred for tests can take some convincing. As lovely as your cardiologist is a fresh pair of eyes on your case might be just the thing you need especially when you will have had all the tests done so recently. You can build a different type of relationship with the new doctor, it’s a fresh start.
I look forward to hearing all the things you will be doing when you feel better! Keep me posted 😊
Agree agree agree. I’m just a bit nervy around so many new people, didn’t want to add to my original post that I feel it’s a shocking disgrace that I know the way I’ve been handled over the years has been a direct result of being a woman. But it is quite obvious this is the case. The thing that has shocked my husband especially in recent years is the way that some female doctors, nurses etc approach your care with the same gender bias. The rot runs very deep.
I have two daughters both making their way in the world and I see changes are coming, they question more and expect more. However this is not a problem that will be eradicated easily, if ever.
Did you listen to woman’s hour last week, they were saying that when they crash test vehicles they only use male equivalent crash test dummies!!!! They introduced female equivalents but they only have to test them in the passenger seat?!?!?! Can you believe that. I could go in but maybe this is for another day/forum 🥴
Oh that's typical! Yes I've noticed the same with female doctors as well. I expect it's because the whole atmosphere in medicine is male oriented and the culture just seeps into them. Without internalising it they probably would not be able to progress with their careers.
Had my Ablation two years ago I went in at 9 and was home by 3. With very little discomfort as not put to sleep. But beware of feeling rough for weeks after the Ablation. You do not think it’s much but quite a shock to your heart. So sleep when your body wants to sleep and try not to fight it.
Thank you so much for such a helpful reply. I really am going to take onboard the advice about resting up after the ablation, I’m going to plan for it and try and enjoy the rest as much as I can given the circumstances.
I had an ablation and didn't have anticoagulants....I should also say that my ablation did not work..3 hrs in the cath lab and was mostly awake and my SVT didn't show up and I went into Afib and they had to quit. They wanted me to do it again and I told my Dr no, I will take the pills, Flecainide and the Metoprolol and have had no episodes for the past 3 years. I wish you luck on your ablation...
I’m sorry that the procedure didn’t work, that’s a lot to go through. I’m glad that you still have a positive outcome in terms of the medicine working and being afib free for 3 years. Long may it continue.
Mine was diagnosed as SVT...the only 2 times I have had Afib was brought on when I was in the hospital, once during the ablation and once after I had surgery and the wouldnt allow me my heart meds for 4 days...sure scared the heck of the those nurses, needless to say I changed Cardioligest after that.
Hi Kelly. I’m 30 and have had svt for around 10 years but can never catch the heart rate or rythem. My heart rate hits 210 for around 15 mins. Did it ever get that high with you. I’m living on my nerves with it at the moment. I don’t know if I’m coming or going. Dr mentioned the procedure that you had. Did it work. Xx
Hi there 😊Yes my rates were very high, over 250 bpm and my episodes could last hours. I would really recommend that you get a kardia either from your cardiologist ( some lend them out) or you can get them online, they are not cheap but worth every penny if you can catch the episode and send it to your cardiologist so they can see what’s going on.
My ablation has partially worked, my episodes of atrial fibrillation are pretty much gone but my svt is back with even faster rates and more frequent episodes than before, although I am not as symptomatic as I was before. I might have another ablation but at the moment I’m coping ok so my cardiologist just calls every 6 months to see how things are. This suits me as it keeps the door open in case I need another ablation in the future.
Not a perfect outcome for me but I would go through it all again, my quality of life is so much better than it was before.
I completely understand that you are living in a state of anxiety just waiting for the next one, it’s so important to catch an episode so that they can see what’s going on.
Your heart rate could be 250 for a few hours god that must be so scary. Mine thankfully last around 10-15 mins and after that I extremely tired amd my anxiety is through the roof for days after just waiting. Could I ask how often you had a svt attack mine can go 3 months with out anything then all of a sudden bang it’s there and I suffer panic attacks so I always feel like I’m going to die. And at the moment I’m going through one of them stages where I don’t think I’ll make it to Xmas. It’s horrible. Xx
I’m so sorry to hear that you are feeling so anxious and scared, it is an awful thing to have to deal with, it really is. I’ve had episodes of svt that have lasted over 12 hours and almost all of my episodes would last over 4-5 hours. Since my ablation the episodes are so much shorter. I used to have episodes almost every month before the ablation now I have them a couple of times a month with very fast rates but they don’t last as long as they used to and more importantly for me they don’t descend into Afib or Aflutter anymore. What has your doctor said? Have you been referred to a cardiologist or an electrophysiologist? Have you ever had a monitor fitted?
Unfortunately when you have this condition it can easily be ignored and passed off by the doctor as anxiety and panic attacks and therefore it can take a long time to get a diagnosis. This was the case for me and a lot of people on this site, particularly women. Providing evidence to the doctor is the easiest way to get things moving. I used a free online heart rate monitor to show his fast the rate was and also called an ambulance when I was in full svt so that they could get a tracing, now I have a Kardia that I use if I go into svt so that I can show my EP what’s happening.
Please don’t suffer this level of fear, there are things you can do to try and get some answers and possibly treatment. My EP told me that SVT is one of the easier arrhythmias to treat so there is hope that you can feel better than you do now. If you read my first posts here you will see the very long journey I have been on with all this also this site guided me though a very very difficult time in my life. Use it as much as you can, ask as many questions as you can and you will get the support I did.
I really hope that you are ok and I promise you one thing you definitely will make it to Xmas. Take good care and if there is anything I can help you with just ask.
Thank you so much for the reply, no Iv been referred to cardiologist amd waiting for a monitor but the problem is it’s only a week monitor they give and some times I can go 3 months with out one. It’s terrifying when it happens and I live alone so it makes matters a lot worse because I go ina state of panic. And then I start to read things online and thing saying that it can go into cardiac arrest amd I’m just terrified. Xx
I completely understand this was the problem I faced for so long, they could never catch it on any tracing, it’s so frustrating. I have had this condition since I was a teenager and I still go into a state of panic every single time it happens, it’s very hard not to, so just know that us a totally normal response to your heart beating at 250bpm. The best advice I can give you is to stop reading things online, there is so much evidence online that tells you that svt us actually quite a benign condition but our brains just seize on the worst things we stumble upon and scare us to death. You will find sound reliable advice here from people that have lived through the exact same condition as you, some like me for many many years without any damage to our hearts and no cardiac arrest. Please think about getting a kardia, maybe even second hand, it will help you to catch the svt the next time it happens.
It took me 30 years to get a proper diagnosis and be referred to an electrophysiologist that resulted in me having an ablation. I spent so many years of my life being told I was anxious, needed to calm down etc. So many years not being believed by doctors, family, friends etc that I hate to think if anyone feeling stuck with this awful condition not knowing which way to turn.
This site and the information you will find here will really help you to navigate things, good luck with everything and take good care
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Lani 
3rd Ablation
Cryo ablation
Zio patch monitor & FIRM ablation
