Hello all I'm not actually sure right now what I'm looking for!
I had an urgent cryo ablation in July2021. I was feeling awful almost like I was dying being in continuous fast AF for weeks was causing heart failure and my EP made me a priority as he was concerned.
Apparent in October 2021 it wasn't totally successful so put on waiting list for 2nd ablation. My AF is now paroxysmal but still episodes every couple of weeks. It was hoped getting heart rate down would help heart failure but EF still only 38%.
I have 2nd ablation booked for end of September and had pre op appt today.
I had wonderful care last time but such awful migraines after.
Not sure I can go through it aall again. Said to my partner I would rather be dead. Thats how bad I feel
So sick of it all. Sorry for moaning
..
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honey1958
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sorry to hear you are going through such a difficult time.
In July I had a cryoablation but went into tachycardia 24/7 almost straight afterwards so 2 months later I had an RF ablation to zap other areas. So far this has been a success but not counting my chickens just yet!
After the first I had several migraine auras and an almost continual tension headache for nearly a week. I had been warned about the aura but wasn’t expecting the headache and still wonder if that was down to the GA. When I had the second , I was expecting a repeat performance but I had nothing. This may be because they went through the original hole in the septum which hadn’t quite healed. Also I had sedation not GA second time round. Did you have a bad headache with your aura symptoms? I am wondering if it would be worth talking this through with the consultant as they may be able to vary the drugs they give you for the procedure or provide you with stronger painkillers. It sounds like you really need the ablation and need to find a way of getting through the after effects.
I really feel your pain and anxiety and hope you can get to some help and answers.
hello dedottie thankyou for your reply and kind thoughts.
You were fortunate to be able to get your 2nd ablation so quickly. Hope it continues to work. I was told last October waiting list was a year for non urgent and it has been.
Had migraines with aura since teenage years thankfully improved post menopause. Ones after ablation were without aura.
I had sedation last ablation and will be same for next. Would prefer GA but not an option due to waiting list. Mentioned headaches to nurse today she..just said sometimes it happens!
The aura is caused by the transeptal puncture as we explain in our fact sheet on recovery from ablation. You are highly unusual in having pain but no aura so this may have been a reaction to one of the drugs used. Most people have aura without pain lasting the normal 20 minutes or so at a time. I also recently had aura after an angiogram which I put down to the contrast used during the procedure, but of course again no pain.
Hello Bob I've always been the unusual one. Crippling migraines earlier in life which did not respond to usual treatment. Was assured would improve during pregnancy and guess what they were worse.
First baby breech. Assured wouldn't happen again. But it did. Sometimes feel like a freak
I seem to be the one who gets the several million to one events. Had a cardioversion which stopped my heart rather than re set it. ! Several broken ribs from CPR later I came back again luckily.
Bless you. You're here because you want to talk to people who truly understand what its like to have AF. We're certainly those people and will help you as much as we can.
As an ablation date approaches I think we all start doubting whether it's the right thing to do or not. We torture ourselves right up to the very day, but I must say that I've never heard of anyone backing out at the last minute. My daughter was furious when I told her I was having a third ablation and that it was in a few days time. I thought she must have had a premonition and I was going to die. Yes that was an awful thought to torture myself with - we often have that niggly 'what if' in our head! I had that ablation and felt well immediately afterwards.
So what I'm saying is your hesitation about having another ablation is totally normal and we all tend to feel that way. Nothing we can say or do will take that doubt away.
Good luck my friend and make sure you let us know how it all goes.
I hooe you are feeling a little better in yourself today. I think part of our AF life is to mourn our Pre AF life,in that we are trying to get used to our new ' normal'.
At times it gets to us,well me anyway ,that we have a condition that can be difficult to treat and can rear its head even after sucessful treatment. I dont believe.anyone with AF has not felt dow about being in the Crazy Heart Club. I find great comfort on this forum.
2nd ablation will be here soon,get it over with and the future will ,Im sure,be beyyer than the present. I wonder if it might be worth contacting your consultant directly through their Secretary if necessary,to raise your concerns?
Yes its the club no one wants to join. You're right I do mourn my old life as I'm sure others do. This condition is just so frustrating! I take comfort too from this forum hearing from others going through the same
I have just had my pre op and was given a questionnaire to complete about quality of life in which I did mention my fears and depression but I find it very hard to talk about
I will have to put my big girl pants on and look foward to a hopeful improvement when its over
same boat here having gone through four ablations (cryo plus three rf), five cardioversions … and still on beta-blockers and rate control drugs. Ask your doctor this question, “if I were your mother, what would you advise?” I asked my EP this and he promptly replied, “Do it, dad!” That was the best assurance and encouragement Id ever received.
Oh my goodness 4 ablations and still needing tablets thats terrible. Suppose no cure is ever guaranteed though.
What a brilliant question you asked! My head is sure I'm doing the right thing as was advised AF would only get worse. Just need to convince my anxiety now!
hello honey I’m sorry you felt so bad afterwards I will be honest with you I have had three procedures now in the last two years and my cryo- and RF the only problem I had was a sore throat the first time and that was from intubation only. It only lasted six months that was the cryo-the RF lasted about a year and a half. I felt like a new person each time. Now this last time in April I had been suffering since December but moving and getting with a new doctor and a new state delayed everything. I could barely walk I pretty much shuffled breathing even staying awake was miserable and I was living in a hotel at the time. I also had my service dog to take care of and get out during the day. I was excited to get my procedure unfortunately after only a week I felt like you do now. Or you did because again I could not walk I could not breathe and had crushing pain in my chest. What is crazy is that I was NSR. The point of me telling all of this is there are no set answers we are all so different for whatever reason when it comes to treatment and procedures. My doctor is the Pioneer of the procedure he did which was done through my wrist carotid and femoral arteries and what is called the vein of Marshall. My previous ablations held. To this day my doctor is still a bit befuddled but determined to make me better. A fib has no cure if it wasn’t in my heart I would say it was a real pain in the ass. I am frustrated and angry etc. I want my life back but one thing I’m not is afraid of another procedure. I had one good month since my big procedure the end of April. I was told from the start it could take a year to heal. If it turns out right it means I could be free from a fib for quite some time. My flutter is fixed unfortunately my permanent afib still here. This morning and all day I have been up in the 120s the lowest I’ve hit is 105. Don’t give up my attitude is hey I’m still here and maybe I would not be if not for the procedure. I’ve also found out that I had a heart attack they are not sure win so I am going to keep on plugging to try to get better. I have been terrified because I was due to have a cardioversion. Talk to the people on here they are phenomenal. Do you still have to talk to your doctor you still have to remember you are an individual but they got me out of being terrified about getting the cardioversion. Unlike the nurse working for my doctor they don’t laugh at you and tell you it’s nothing they tell you like it is but they also will tell you if it works how amazing you feel immediately. Hang in there and hold our hands we are all in the same boat 🙏🏻❤️
You have certainly been through it and sorry your AF is still there.
My first ablation was cryo but think I'm down for the burning one this time?
Did you have your cardioversion? If you're still waiting the procedure is nothing to worry about.
Mine sadly only lasted 3 days.
It's breaking the AF/anxiety cycle which is so hard. They seem to feed off each other. I have decided I will see my GP when I can to ask for help with anxiety and depression. I have taken fluoxetine for years but doesn't seem to help now. Doesnt help thatI have a terrible fear of hospitals!
You are right we have to keep plugging away as best we can and keep trying to get better.
Hi hon my RF The burning one lol lasted a year and a half and honestly from day one after it I felt good. Nothing went wrong with either of those. If you haven’t figured it out yet we are like a pipe that keeps getting leaks in different areas only with us it’s the electrical system of the heart. So it means your doctor did a good job he can’t fix what hasn’t broken yet. That is my take on it anyway two years in.
I am at war with my doctors medical assistant. I don’t know if he even knows about this. It has been a couple of weeks now. She is clueless about what we go through doesn’t seem to care and has no sense of urgency. She messed up me getting my cardioversion now my cousin is out of town so I really can’t plan on anything until he returns anyway. Houston is several hours away and I need him to take me for the procedure.
at this point I am looking at other doctors. My doctor is phenomenal but if he doesn’t bother keeping his finger on what’s going on with his patience then he is no good to me. I am going to talk to my GP who I trust maybe he can do a consult with my EP/cardiologists and get to the bottom of it or I am going to go elsewhere. The hard thing is the procedure he did on me is his procedure he is the pioneer and has been written up in JAMA etc. he is a phenomenal surgeon a P cutting edge but if I can’t reach him about a problem like I said we’re good is he. My doctors in Florida pretty much had open door to me and I am that good to deal with lol not tooting my own horn but I have never had anything like this happen with medical staff
I am already on antidepressant it’s probably what keeps me together I also have PTSD and anxiety. You are right about how it can get to you although I never have fear of the hospital for some reason. Both hospitals I’ve dealt with I can’t say enough good about and once you get there they sweep you up and take care of you. They have made me feel like a princess at both hospitals.
I am not going to be calling apologizing when I did nothing other than complain about an inept staff attendant. She must be related to someone protecting her that’s all I can think because you and I would not get to keep our job causing this much upset to a heart patient. It was simply scheduling me for a Covid test and blood work that’s it and I turned into a drama. I hate drama I hate a fib
yes plug away we don’t have a choice really except when it comes to medical care. I have not heard from anyone since sept 1. This is unbelievable. Oh I could call and say I’m sorry but I’m not sorry for being upset over the poor service and lack of taking care of things. What made it worse was about 8 o’clock the night before my cardioversion the hospital called me to confirm. She had not even canceled the doctor which meant he would have been there in the morning and I would not have been. I told her on Monday it would have to be rescheduled because of the turnaround time for the Covid test they insist on which Hass to go through the lab 3 to 5 days I found a way to get everything done but when I called to tell her someone else was on the other line and gave me a hard time so I lost it all I said was whatever like a two year old and hung up. I wrote her telling her I was not going back-and-forth I mentioned the person on the phone at Cetera I said nothing out of line bad at her but I did let my feelings of her not caring out I told her that is how I felt she just doesn’t care about the patience or urgency but I only have one heart so I have to care
I shoot from the hip LOL I have a friend who is a deputy sheriff he always laughs and will say no tell me what you really think lol because I will tell you exactly how it is. Thank you for your support keep in touch if you would like
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