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!