PROBLEMS AFTER CARDIAC ABLATION Part 2 of 2

Posted 2/09/13 by Loquitir

I have just found this thread having been advised that I am to undergo my 6th ablation in 8 years. I was diagnosed with Atrial Fibrillation, Atrial Flutter and Mitral Valve Prolapse at the age of 25 with a six year history of irregular heart rhythms. Typically at the point of diagnoses my resting heart rate was around 160 bpm. I went to join a gym but was refused following a fitness assessment and was told to see a doctor because my heart rate on minimal exercise exceeded 240 bpm with 20 seconds. I wasn't terribly surprised be caused I'd had a fast heart rate since about the age of 15. In contrast the rate slowed in bed to about 20. I started to have unexplained blackouts or fainting episodes about the age of 24. The upshot was that I had an arrhythmia. Initially Ablation procedures were just about to start in the UK so I opted to wait 2 years to have an ablation which took about 10 hours. This removed the Atrial Flutter and reduced the extremities of the AF. My resting heart rate dropped to around 120 but I was still experiencing AF and 'pausing'. The second ablation was extremely protracted and took 12 hours. I was in sinus rhythm for one month then reverting back to AF with intermittent syncoal episodes. The third ablation took 8 hours but had dramatic results delivering paroxysmal AF from chronic AF. The rate remained problematic. The 4th ablation was planned because the physician was unable to ablate the foci in all 5 branches of the pulmonary vein at once. The 4th ablation took 5 hours in part due to the advances in technology. The 5th ablation dealt with a reconnection of the previous ablated tissues but on he whole the AF had dramatically controlled with medication. At that point I had used flecanide which had no effect, disopyramide which was helpful but caused problems with my urinary tract, arrythmol which was not very helpful, amioderone which in the long term caused me problems with my skin etc and more recently multaq which I can tolerate but isn't as effective. I am very susceptible to arrhythmia from common foods and medications which are known to cause arrhythmia. I have never smoked or drank alcohol, and I have always ate and lived healthy. There has been some suggestion in my case that the recurrence of AF stems from mitochondrial disease of the foci.

I am about to have the 6th ablation as for some unknown reason the AF has deteriorated back to chronic AF in spite of the previous intervention. I have been pleased to live with the results from the last ablation. Prior to the use of ablation, there was only the use of a pacemaker device and all that this entails.

Has anyone ever had investigations in to arrhythmia related mitochondrial disease ? Does the long term prognosis end up with a pacemaker device? Any thoughts would be helpful.

I've suffered most of my life with arrythmias, and found this forum searching the web for other people going through what I have. It's comforting to me, in a way, to see that I'm not the only one putting up with post ablation complications.
I'm 45 and started having SVTs since I was 13. I could control them with deep breathing and bearing down, so I never had much reason to be too concerned with them. They always occured only under physical stress from activity and exercise. They made the sports I played annoying at times, but nothing more. When I was about 31, one night, I attempted to get rid of a bout of tachycardia with my usual methods, but instead of reverting to normal rythym, I experienced a worse, erratic heartbeat. I saw a doctor 2 days later (1st time I ever went to a doctor in my adult life) when the rythym didn't return to normal. He did EKG and told me I had A-Fib. Made no attempt to cardiovert me or refer me to ER or cardiologist... just sent me home with a prescription for lanoxin. I suffered for 5 straight days without end to my A-fib until it finally resolved on its own.

A few months later, another tachycardia event went much worse when I tried to end it with my breathing excercise. Ambulence ride to the ER, I had the EMT tell me I was having Ventricular Tachycardia and I needed immediate treatment or I could die! That was sobering to hear. They shot me with Lidocaine and I reverted right away. Cardiologist saw me and diagnosed me with WPW Syndrome. Immediately suggested catheter ablation and told me It was a simple procedure that would have me back to normal with no more problems for the rest of my life.

That was 16 years and 4 ablations ago and my life has been hell ever since. The first ablation failed before it even began. They ordered catheter sheaths that were too short for me (I'm 6' 4") and during the procedure, they nearly dislocated my shoulders in the OR trying to arch my back so the catheter could get all the way into my heart. I awoke after 8 hour procedure in excruciating pain in my shoulders and chest and spent 2 hours screaming for pain killers. The next day, EP came to my room to tell me ablation failed, EKG showed my pathway returned. They tried to reassure me that beta-blockers would control my SVTs. They didn't. I was miserable. Tachycardias all the time, and PACs constantly - something I never had before ablation. My job suffered and I suffered mentally. I soldiered on as long as I could, waiting for an improvement that never came.

It took me a year and a half to finally agree to a second ablation. I was told by many in the area that my EP was the best around and I did my best to trust her to get it right the 2nd time around. The day of the procedure, Anesthesiologist was a no show. They started the procedure with me under local anesthetic only. There is nothing more creepy and frightening than feeling them stabbing your groin and chest with huge needles to start the catheters in you. It was also VERY unsettling being wide awake through the mapping procedure where you feel your heart rythym constantly changing into every conceivable pattern possible. And the burning when they did the ablating. It was a living nightmare! The anesthesiologist showed up finally and got me put under for the rest of the procedure. I was awoken in the middle of it and told that I needed a pacemaker because they couldn't get my heart back to normal rythym and needed my permission right then and there. I told them to get it back to normal or kill me trying and slipped back into unconciousness.

In recovery, I felt horrible. They managed to return my heart to normal, so the pacemaker wasn't needed (turned out that the anesthesiologist had me shot up with too much drugs that prevented my heart from returning to a normal sinus rythym).
The next day EP came in and again, told me ablation failed. I felt like I had just died. I can't describe what that felt like hearing that bad news. I went home on beta blockers and spent the next 2 weeks bedridden with unbelievably relentless PACs and other arrythmias. It took all the courage I had in me to suffer for 6 months of slow recovery to where my heart could tolerate normal activity again. I tried to work, but lost job after job because I couldn't keep up the pace with my arrythmias, extreme fatigue and weakness.

1 year later I ended up in ER again with BAD SVT... heart rate was 320 and I was convinced that I was dying. They tried everything to cardiovert me - one drug after another. Nothing worked. They hit me with doses so high that I stopped breathing and passed out twice and almost died because they couldn't get me to breath again. They finally put me under and nailed me 9 times with electric cardioversion to get me back to a normal rythym. When they released me I fainted on the floor twice and was rehooked up to all their gizmos for observation. My heart was a wreck needless to say :(

I seeked second opinions from other cardiologists - EP specialists - and they looked at my "normal" EKGs and told me that they were anything but "normal" and refused to accept me. I had to stick with my old cardiologist.

I developed many other problems - severe heartburn, fatigue, migraines, chest pain. I was sent to other specialists to find other sources of health issues that may be irritating my heart. Everything from acid reflux to sleep apnea was blamed for my heart rythym problems. I was soon on dozens of medications for a myriad of problems. I did not improve any. I tried all kinds of diets, excercises, prayer, anything that could help me. I still had problems and they were getting worse.

Ablation number 3 came and went with the same results - failure. My EP immediately rescheduled me for a 4th ablation 2 days later. At that point my life was over and I couldn't have cared less if they wanted to ablate me every day for the rest of my life until they fried my heart extra-crispy. The 4th ablation FINALLY, FINALLY produced success. My extra pathway stayed gone and I have been free of any SVTs to this day. I wish I could say that this story has a happy ending but it doesn't.

Like everyone else on this forum, I developed so many side effects from the heavy duty ablation work. It took me 6 months for heart beat to settle down to close to normal. I couldn't sleep at night due to PACs and chest pain. I had to sleep sitting up. I would be in tears many nights because all I wanted to do was lie down flat and sleep. I lost all ability to enjoy any physical activity and my weight ballooned to twice my normal weight.

Today, I have deteriorated, healthwise, to the point where I have to face the reality of not working anymore and going on disability. I have fiercly struggled to keep working and my employer had made a great many concessions for me healthwise, but I just can't do it any more. I have an 8 year old son I have to support and be a father to, but most days I am fatigued to the point where I can't even play with him outside. I have stomach problems that make it intolerable to eat, and when I do my heart gets irritated and starts off with the PACs and fluttering. I feel trapped in my apartment - It is very hard to even get out grocery shopping. A day of work drains me so bad that I walk in the door in the evening and die in the couch where I sleep. I havn't slept in a bed for years - every time I lie flat it takes about an hour, but my heart starts acting up so bad I have to sit up. I am losing my health insurance next month so I'm left out in the cold for any continuing care, as noone will insure me for any amount that I can afford so I'm faced with an end to follow-up care with my cardiologist.

All of these concerns have been voiced to my Cardiologist over and over. Every test they give me... ekgs, echos, stress tests, bloodwork, everything says that I'm perfectly normal. My doctors are convinced that stress and depression is the cause of my problems when it is the other way around. They tell me I just have to live with it and adjust my life accordingly because they feel a 5th ablation won't accomplish much of anything. Not that they would ever convince me of doing another one...

I'm sorry to ramble on, but felt I had to add my experience to this post. While I did get rid of my SVTs, the net results are far worse. I wish I had been given an option of controlling my SVTs with medication before the 1st ablation. I wish the doctors are more forthcoming about ablation side effects and success rates... I was told 95%, it obviously didn't include me. The most difficult thing to deal with is that feeling of dread and anxiety everytime I feel palpitations and wondering if I'm finally going to die now. It's easy for the doctor to tell you that PACs and skipped beats are harmless and wont affect your life span... especially when they don't have to endure them personally. It's the feeling of losing control of my life due to all the side effects that is really hard to accept. Good luck to those of you who are contemplating doing an ablation. I wish you the best!

I had my ablation done April 30, 2013 and felt like I was making a faily smooth recovery.  Heart rate was 60 - 65 when not active. Then, three weeks to the day, I felt like I was fluttering.  Four days later I'm at the doctor's office and he is confirming that I am back in A-fib.  How disapointed and deflated I am. He has scheduled a Cardioversion (basically a out patient shock treatment) in ten days.  Cardiversion initally was explained to me as the first option but, rarely is long lasting.  I am confussed as to why the doctor wants to revert to the less effective procedure.  I am assuming the common thread to the participants of this forum, is to avoid a pacemaker.  I was so hoping that the ablation would be the final step of getting on with "normal stuff."  I guess it should not be any type of consideration but, the Explanation of Benefits I received showing the cost of the ablation procedure floored me.  With that type of reimbursement being paid for the procedure, you should be fixed.  I am just mad because I so much wanted it to work. 

Hello,

I had my ablation done three weeks ago for AVNRT in New York. I am feeling really tired and have paplations at night for the past two weeks. I am wondering what is gonig on? Can someone please help me? My ablation seems to cause more problems. I am 34 years old and had SVT for two years.

Thank you.

I had an ablation a year ago and reading some of the comments that have been made is quite disturbing.

Firstly following an ablation, ie the day after, there is no way an EP can make a statement such as the procedure failed. It can take up to three months for the internal scars to heal and for normal rhythm to resume.

Secondly Atrial flutter or fibrillation can and normally worsens for the first two to three weeks following an ablation, this is all part of the healing process.

My advise is to sit tight for three months and let things settle. If AF is caught early on then ablation is quite successful.

If you have had it for years then sometimes 2 or 3 attempts are needed.

Everyone is different, therefore you cannot make assumptions based on your own personal experiences.

I am running again now, sleeping well, I get the odd ventricular ectopic, but I am free of medication and feeling so much better.

If I had to go through another ablation I would.

This procedure does not work over night.

Take care and good luck.

To all concerned

I am just going to relate to you my experience.. I was in a-fib from October until March, (because of also having Sick Sinus Syndrome I had a pace maker put in), tried to convert with meds , it didn't work. Had a cardioversion done in March. was good to go until august at which time, I went back in to a-fib. The second time it was so much more debilitating than the first time. My local cardiologist sent me to an Electrophysiologist to consult about an ablation. I had the cardiac ablation on September 4 2012. I was immediately in rhythm and had occasional flutters. The doctor said that was normal. In September 2013 I was taking Prednisone for a problem I was having getting rid of insect bites on the back of my neck when I went into a-fib again. I stopped the Prednisone and within 1 week I was a-fib free once again. I feel good and I have decent energy considering everything.
This just shows that no two people are the same when it comes to this situation. Please trust in your doctor when you have issues like this.. if you don't or can't trust your doctor, find one that you do trust.. makes a big difference!!!!
Sandi

I am 8 days post op ( Ablation for A-fib) Was a healthy active 57 yr old Male with a 50 -55 resting heart rate before this. Had a few a- fib episodes a few years ago that required Cardio verting. A couple months ago I has a string of light headed a-fibs that resolved on their own. I also have a bicuspid aortic valve that is compromised to 1 cm but has good flow as I aced the stress test. My Cardiologist recommended the ablation and stated they have this procedure down now and have made major strides with the science. My question is this : a few days ago my heart rate got stuck at 145 for 5 hrs after a little excursion and resolved itself by morning. My resting HR right this minute is 70 and when I get up to go outside and to get the paper it jumps to 120( before I could run a 9 min mile without going over 150bpm). I am very concerned after reading these many (too many) stories of failures. I tell you if I would have found this site beforehand I would have NEVER allowed it to be done. The best to you all and may all the Love in the world come your way!! Mark

Atypical, I was very discouraged at 3 weeks as well. 5 a-fib episodes and 1 cardio version in this short period .. Fortunately the last week and a half ( I am 5 weeks post op) I have been feeling much better.( weening myself off Multaq, this stuff makes me feel terrible) A little skip here and there and I'm careful not to exert to much to quick. I too ran 4 times a week prior to this and its very depressing not to be able to exercise without inflaming the heart. I am feeling better each day and hope this decision to have the ablation was the right one ( I have my doubts) Mark [email protected]

2 1/2 months post op. Feeling pretty good and able to do about 70% of the exercise before the procedure. A couple skipped beats here and there but zero A-fib. My resting HR was very high ( 78-90) afterward but has calmed down recently ( 62-70). Prior to the surgery my resting HR was 52-60.
My loving thoughts are with you all and wish you the very best in your recoveries.

Hello, I am a 74 year old man who had an ablation done in September of last year. In 2009 I had my first SVT episode. I know that now after all these years thinking it was A-fib. I was working outdoors in my yard in Phoenix when the temp was over 100. Not hydrating properly and mental stress as well. I drove myself to the hospital with a pulse rate of 240. They did several ekg's at that time. I was treated with some intravenous drug and prescribed Sotolol (betapace). I was told I had A-fib I and was released with a referral to a cardiologist.

Let me say that I am not an easy man to treat. I had my right lung removed at age 29 because of a misdiagnosis. From that experience I developed a very skeptical view of Doctors. My experiences with Doctors over the last 45 years has changed my view from skepticism to Cynicism. When I went to the Cardiologist (EP guy) referred by the Hospital, he did an ekg which was normal sinus rhythm. The Sotolol was working. He started to talk about an ablation. Whoa! I'm feeling fine at that time. I asked if he had a copy of the hospital's ekg's done while I was in tachycardia. He did not. I told him I would make another appointment so that he could review my abnormal ekg's then talk about treatment. I was assured that for my next visit he would have the abnormal ekg's. He did not and I walked out. I Didn't see another Cardiologist for several years.

The Sotolol worked well for me. I did have some side effects but I attributed them to old age. Lower energy, less stamina, but overall I seemed fine. I did however, have an episode in 2012 when I didn't take my meds for a couple of days. I then visited a Cardiologist (a plumber) who did all the tests. Echocardiogram, stress test, etc. My heart was perfectly healthy but for the electrical problem. He recommended I see an EP (an electrician). I declined.

about a year ago I had an attack of diverticulitis which was very very painful. I was hospitalised for several days and on a morphine drip. The treatment for this condition is clear liquids and antibiotics. I was released after 4 or 5 days. I felt terrible. At home I curled up in my bed feeling to weak to move. The next day I had the worst attack of tachycardia ever. I was taken to a different hospital by ambulance to be treated. The emergency room doctor looked at my medication list and told me that I should not be taking the antibiotic prescribed for me with Sotolol as it has a major interaction. I had been taking the both drugs for 6 days. After that I had almost daily attacks of tachycardia and when I wasn't in tachy my heart felt like it was flopping around in my chest like a fish out of water. I am convinced the drug combo screwed up my heart.

My cardiologist did a 30 day holter monitor which had an alarm whenever I had a cardiac episode. It recorded each episode and stored four episodes in memory. I had to dial in to a central monitoring system and download the data after the memory was full. I sometimes download a dozen times a day. I got to know the names of each of the techs. The result - SVT's not A-fib.

All this time I'm feeling tired and depressed and no appetite. My cardio guy attributed this to the Sotolol, the beta blocker. He explained that although Sotolol was an Antiarrhythmic, it was also a proarrhythmic. He said the more you take the worse your heart is when you don't take it. Although I had been taking Sotolol for many years without much effects, he convinced me to change to Flecinide. He wanted me in the hospital while I weaned off Sotolol prior to starting Flecinide. While in the hospital an Electrophysiologist stopped by on a recommendation from my Cardiologist. His opinion, I need a pacemaker to make sure my low heartrate didn't turn into no heartrate. He said a fast heartbeat wouldn't kill me but a slow one would.

Now this guy is supposed to be the best in the area. Has done thousands of ablations. I told him I wanted to try the flecnide and see if my heartrate got back to the fifties. I couldn't stand the flecinide. Started on metoprolol. Seemed to work OK but still tired and depressed and still no appitite. I decided I'd get the pacemaker and see if a faster heartbeat would give me more energy. Got it and it didn't. I can't tell the difference. Meanwhile I'm not an invalid. I'm not back to working out every day, but I go to the mall and do a couple miles. I can handle most of the house maintenance. My wife said I shouldn't complain for a 73 year old guy with one lung.

OK, I follow up with the EP guy who put in my pacemaker. He wants to do an ablation. He says that SVT's are easy to ablate. Most every one he's done has gotten off meds. Sounds like it would be worthwhile. My big question was "is there any chance at all that I will feel worse after this procedure?" "Absolutely none" he says. He lied!

That was last September. Since then I haven't got the energy to walk around the block. He told me it takes three months to heal so hang in there. I've tried everything I could think of. I changed the beta blocker (metoprolol) with a calcium channel blocker (don't ask me the name) Gave that a couple months trial. Changed back to Sotolol a month ago. No better. I had to interrupt this post to mail a letter before the mail gets here. The walk to and from the mailbox set me off. Pulse about 130 or so, can't get much air, shallow breathing. I really don't want to live like this.

After reading all I could, I have decided to have my sinoatrial node ablated. Cut the wire that's shorting out my electrics and run on a battery - the pacemaker.

Wish I had some help for some of the posters here, but I don't.

Thanks, Gearhead

hi there. this is a very old thread. some members may be mia. will post later. keep well. the forum is slow at the moment. welcome.

yes I hope so too. welcome to the forum. you may like to start a thread, this is an old one and all of these members I have not seen around. let us know how things are going if that is alright. take care.