PROBLEMS AFTER CARDIAC ABLATION - Part 1 of 2

Hi, I don't know if my story will be of interest to you?

I have had 3 ablations and am waiting for a fourth. I was originally diagnosed with AVNRT. After the first ablation this returned after a couple of weeks so I was put back on Flecainide and on the waiting list for a second ablation.(I don't tolerate betablockers well). It was clear while I was having this second ablation done that it wasn't going to work so I carried on with Flecainide and waited for a third ablation. By this time I had what was described as 'multi-focal left atrial tachycardia' too.A few months after this second try while I was waiting for the third and still taking Flecainide I had an episode of coupled beats and atrial fibrillation and had to go to hospital overnight for Adenosine. This got my heartrate back to 'normal', ie no coupled beats and AF but still having the other problems. I never really got an explanation as to why this happened, and it never happened again.The third ablation showed that the AVNRT had gone, but found left septal tachycardia, so I am waiting for a fourth ablation!  

I'm so sorry that your ablations haven't worked well, it's so stressful and frustrating. Like you, I am limited in what I can do now - I'm not working at the moment - and being short of breath is very tiring. Are you seeing your doctors again? It's hard to have to keep pushing for treatment when you feel weak and I hope they are not trying to fob you off because your cath was all clear. Do they just expect you to put up with the skipped beats? Please do let us know how things are going for you.

Juliette

Hi,

What is AVNRT? I can't seem to figure out what the abbr. stands for. :) Sorry.

Hi Juliette,
Thanks for the reply. I am from the US Pittsburgh,Pennsylvania and had the procedure done at a large teaching hospital which is one of the best in the country. Fortunately there isn't really any delays in our private healthcare system. When my first ablation didn't work, I say the Ep on a Monday and was in the hospital that thursday having the procedure. I thought having two was frustrating, I hope you have luck with your fourth. One thing I wanted to mention - for the first 4 weeks after the 2nd ablation I had the tachycardia really bad and only had a few skipped beats here and there. When they put me back on the beta blockers, the tachy. subsided and I went straight into the skipped beats - maybe the tachy masks the skipped beats?? Also the stairs really get me, too - sometimes I have to stop half way up and rest. Cleaning and vaccuming can do it to. I am only 39 and I feel like I am 90. I see these commercials on television with seniors exercising, etc. and I think boy I wish I could do that! My quality of life has really plummeted and I am desperately seeking answers. Please keep in touch and thanks again for the reply.
Take care..............

Yes thank you Rhythmrn.

The more info I can learn the better. :)

Hi Paul B.,

Thanks for your reply. What arrythmia was your ablation for?? You said you have not been in sinus rhythm - what arrythmia are you having now?? As for the beta-blockers, that was part of my master plan! I had suffered with SVT since I was a teenager and been on beta-blockers for 25 years. I figured I could get off of the medication and never have to worry about the awful SVT again. Now I am back on beta-blockers, short of breath, having constant PACs and depressed and anxious. My decision to have the second ablation was a no brainer though since the first ablation pretty much put me into daily episodes of SVT! Keep in touch and take care..............

Hello :)  My name is Jen and my husband just had an ablation about 3 weeks ago that was unsuccessful because once they got in the heart to map where the extra electrical impulses were, they found out his is at a rare location, on the outside of the heart in an area that is hard to reach near a major artery.....doc said he has a rare form of WPW. So, as we are now scratching our heads wondering and worrying where to go from here, my husband is having waaay more frequent bouts of SVT and these ones he can no longer stop himself, instead we keep trucking up to the ER to get some adenosine. Anyway, I wanted to reply to your post because my husband definately seemed worse for the wear, and when I brought it up to our electrophysiologist at the followup, he rolled his eyes and summed it up to being psychological, which was very unsettling! Then , I found this chat forum where many people have said that their docs told them that it could be worse for a while while the muscle basically heals up from the trauma of the ablation procedure, which made me feel soooo much better and at the same time makes me question my doctor......he acted like there was no way. Anyway, I guess what I am trying to say is that I keep reading time and time again that after an ablation it is possible (even for people that underwent a SUCCESSFUL procedure) to feel worse for anywhere from a few weeks to a few months after the ablation procedure. Hope that helps, and if anyone happens to read this and has any advise as to where we should go from here or if anyone has heard of this odd pathway location condition, please let me know! We're totally lost! Thanks, Jen and Vic from Florida

Hello everyone,
New member here, and just gone through catheter ablation in Aug.
I've got to say it took me quite abit of time, even now, to feel like myself again.
Had 2 EKGs, chest x-ray, and Holter monitor done, because of shortness of breath, dizziness, dull left arm numbness and palpatations, 1 1/2 mos. ago...all were negative! Very frustrating and confusing because why am I getting these symptoms but my tests were ok?
Like many of you who went through ablation for afib, the info says you should be back to your old self in a week! I'm sure the caveat applies here...each individual may vary...but come on, normal life in a week?
I'll see my cardiologist for our 3 mo. follow-up, in 2 weeks.
Anyone who went through successful catheter ablation, please post...Thank you, c. 

Dear Gauteng:

Sounds like you need to switch to a new electro cardiologist. Search under your states medical licensing board to check your doctor's or new potential doctor's qualifications. Also check the US News and World Report top hospitals in the USA list for heart and heart surgery for 2010-2011 at: http://health.usnews.com/best-hospitals/rankings

I had my first ablation for a racing heart aka Atrioventricular Nodal Reentry Tachycardia (AVNRT), a form of Paroxysmal Supraventricular Tachycardia (PSVT), right after Christmas 2009 at age 45. The surgery was one of the easiest surgeries really that I've had yet, and was done under general anesthesia. They operated for 8 hours and I stayed one night in the hospital after being in the intensive care unit for 6 or so hours. I felt great and actually "normal" for the first time in years, almost immediately. Recovery time was a few days before I was up and around again, and a couple of weeks before I was lifting stuff. But it only lasted for a few months and then the SVT started to come back slowly but surely -- which sucked.

I am scheduled for a second cardiac ablation the first week of April 2011 at Scripps Memorial Hospital in La Jolla again (UCLA, MAYO Clinic, are also top notch). Unfortunately I can't tolerate a lot of medications, especially beta blockers. So I take Verapamil each night and if my symptoms are bad I take it again in the morning (but that wipes me out for the day). My electro cardiologist says that the little nerve endings can grow back in the ablated areas and cause the problem to reoccur, or it can be new areas. He won't know for sure what the cause is this time until I have the ablation done again. I've done all the tests, and worn the monitor round the clock too.

I also wear a watch that monitors my heart rate which helps me keep on eye on the problem ($45 at the pharmacy). The other day it was 176 bpm while I was sitting down. My racing heart is triggered by any kind of movement, including just rolling over in bed at night. Excedrin, caffeine from tea/coffee, even alcohol increases my heart rate. I feel like I'm running a marathon constantly, and often out of breath, dizzy, and have chest pain. Looking forward to my 2nd ablation and hoping it will take care of the problem once and for all, but understand the doctor can only take baby steps. If they burn too much of the affected area, it can permanently lower your heart rate and then you'd need a pacemaker -- which I'm way too young for. I do understand that I might need a 3rd ablation though. One step at a time though.

Anyhow,, wishing everyone the best with their heart issues. I feel for you, and understand your frustration and pain. I think it really helps to go to the best possible doctor and hospital that you can get through your insurance, and to do your homework before committing to a doctor/hospital. Your heart is just too important. Don't settle for mediocre health care.

My daughter had her first ablation procedure and is now having a very hard time sleeping. Is anyone else experiencing this? Any remedies?

Dear Mr. Rednecksoldier,

So sorry your having this problem with your heart's conducting system at such a young period in your life. I am NOT an expert in cardiac ablations but since I had an ablation on June 10th of this year, I too am having a rocky recovery and want you to know that in the large majority of cases (above 90th percentile) patients do recover arrhythmia-free or at least are relieved of the arrhythmias that they had...at least that's what the medical literature wants us to believe. One big problem for me is that I am a medical doctor (used to practice anesthesiology, so I'm not giving advice as a doc or a cardiologist, but I'm merely sharing with you what I have read as a patient and am relating my own experiences) and it's hard to be a doc when you're sick and vice versa.

I had four areas in my heart ablated...two by radio-frequency destruction and two by cold catheter ablation. I have had episodes of SVT (supra-ventricular tachycardia) since 1993 when I caught a "cold" virus from my then-3 year old son. It settled in my upper heart chambers and scarred my conducting system, I have been on Atenolol and more recently Metoprolol since '93 and can agree that it has put a damper on my lifestyle. Flecanide made me miserably nauseous so I had to stop it. My cardiologist felt for years that ablations were not perfected and told me to wait.

Yesterday was a real disappointment for me...my first post-ablation arrhythmia..heart rate went to 130. I waited an hour in hopes this was just going to go away by itself, and that it was just my heart being sensitive to to the absence of beta-blockers ( I was weaned "successfully" from them 2 weeks ago) but I woke up this morning short of breath and with a heart rate of 160..clearly more than a mere sensitivity...I still have a place that needs ablating. So I'm back on atenolol and I'm using a non-looping cardiac monitor for a month to catch these arrythmias and record them so that my EP guy can determine, by the shape (morphology) of the P-wave (of the EKG), exactly where in the atria this bugger is coming from.

I guess my message is: BE PATIENT! This is a challenging and relatively new area of medicine. With patience, you should ultimately get relief from your arrhythmias and be able to ditch the beta blockers. It's better to have the doc go gingerly the first time and go back a second time. If they get too aggressive and overheat the tissue, you can wind up with bad side effects. One thing I want to share with the whole forum is that when indicated, your EP guy can use cold ablation which kills the troublesome cells by freezing. In some areas, like the pulmonary veins, this is thought to reduce the chances of contractures and narrowing of the pulmonary vein's lumen (opening). Freezing is thought to preserve the stroma of the vascular and cardiac tissue (the support structure) which is supposed to reduce the scarring effect. The repair cells can use this as a scaffolding so the tissues retain their strength. The atrial wall is pretty darn thin, so lots of heat in one place can result in complications...that's why EPs are trained to go gingerly, even if it means a second procedure. To use language you might understand, going back a second time is like a field marshal or general executing a brilliant retreat, allowing his troops to resupply and his supply lines to shorten before a counter-attack....men of towering military intellect like Rommel in North Africa and von Manstein in Russia would be good military examples... Once your doc narrows down the offending locus of cells causing the trouble, he can nuke them once and for all with careful rules of engagement!

The naldolol may be limiting your exercise and heat tolerance which is expected. Remember, it takes about three months for complete healing in most cases. Primary healing occurs in the first month, and by the third month, the tissues re-heal...they break down a little and "remodel" which can play havoc and even result in an unexpected arrhythmia until complete healing has occurred. That's why I would not recommend having a second or third ablation right away after the first. Give the heart's endothelium (internal lining cells) a chance to re-grow and re-coat the inside of the heart and blood vessels and allow the heart to "declare itself". If after the healing is complete, you have breakthrough arrhythmia, then a re-ablation makes sense. This is what I have heard and read in the literature. But try not to let it get you down...there IS light at the other end of the tunnel.
One last word: Drugs like Metoprolol cross the blood-brain barrier. Atenolol apparently does not. I'm not sure about naldolol...but these beta blockers can affect the brain and make you somewhat depressed. I found also in my case that taking ibuprofen (Motrin or Advil) really reduced the inflammation and that I had fewer immediate post-ablation arrhythmias when I stayed on it around the clock. You may react differently. I agree that there are few details on the Internet that explain what to expect during healing. And everyone's body is different and heals differently...I hope that I've filled in some of the " knowledge gaps" by relating my own experiences as a patient. Being a doctor is hard...but being a patient is NO EASIER!

If I was taking a beta blocker and it caused my heart rate to drop into the 40's and even 30's while I was asleep, I would BACK OFF on the beta blocker. A persistent heart rate of 30-something is essentially not thought to be compatible with life. Physiologists teach that the heart's ventricles commonly have an inherent myogenic capability of producing a heart beat of 60 per minute without input from the atria, however, it's best NEVER to rely upon this physiological concept. Overdosing with a beta blocker can cause first-degree AV block, which in most cases, when not combined with bundle branch blockade or other disorders of rate, rhythm, or axis, is not thought to be life threatening when brought to the attention of a physician for treatment. Glucagon can be administered, but this can exacerbate your arrhythmias.

You cardiologist may recommend a separate anti-arrhythmic drug that will not contribute to worsening of the blockade. I believe that beta blockers are not thought to produce other degrees of AV blockade...second or third degree, for example. Disease of the AV node and other conditions (viral sequelae, etc) are thought to contribute here.

In short, a heart rate of 30 really cannot be allowed to go untreated....it may be time for a pacemaker...

Thanks for the replies--

What I meant was my rate dropped into the mid 30's before I was on the beta blocker and before abalation. As far as I know, now it is dropping into the high to mid 40's when I'm up and about. Yes, I'm concerned and will bring this up with the cardio doc as soon as I can get in again. I told him about it before and he just passed it off saying "plenty of people are walking around with a rate in the high 40's and are ok. Well, sure, if you are a runner and are in tip top shape, that kind of heart rate is normal, but not for a 73 yr old who has been forced into a somewhat sedentary life at the moment. Thanks for the validation.

Will follow up on this.

Again, thanks.

Michigoose