AV ablation

I have ectopic atrial tachycardia. Originally they thought it was a problem with the SA node so there was talk of doing an SA node ablation with pm implant. Now they know its not the SA node and I will be going for a consult to do anther EP study with probable ablation. I have already been told by my cardiologist that in my case an ablation in the atria will probably be extremely hard and risky if it is even possible. From the research I have done, in the event that they can't ablate the abnormal area in the atrium, then perhaps an AV ablation with pm implant would also work to control my debillitating symptoms. The one thing I need to ask is if that is what ends up happening, whats happens if the pm fails and you have no AV node? Do you have time to get to the hospital or are you basically dead and hope that cpr works long enough? My condition is not being controlled my medication and my symptoms are extreme. Thanks in advance for the advice.

8 Comments

Meds

by Jules1983 - 2010-05-02 01:05:03

I was taking Metoprolol since July. Started off taking 12.5mg once per day but ended up eventually taking 37.5mg 3x/day. I would still have episodes with my hr going over 200. The problem with the meds is that blood pressure is already borderline low so it can't really tolerate a reasonable dose of beta blocker. As a result, the also added Florinef to try and increase my blood pressure just to allow them to continue with the higher dose of betablocker. When they realized that Metoprolol was not working they switched me to Nadolol. I started taking 80mg 2x/day but again, my bp could not handle it so now I take 40mg 2x/day. It still is doing nothing to control my symptoms. My cardiologist said there are not a lot of medication options for me because of my low blood pressure. I am told by my cardiologist that an ablation is my only choice outside of being medicated for the rest of my life. I am only 26 so I don't think the meds is a realistic long term option especially since they aren't working.

Only betablockers?

by golden_snitch - 2010-05-02 02:05:02

Hey,

so, betablockers are all that you've tried? Ectopic atrial tachycardias (EATs) usually do not respond to betablockers very well, class 1C anti-arrhythmic agents are the better choice. Flecainide would be an example or Propafenone. I have been on both and tolerated those very well.

I'm 28, and I have had and have all kinds of supraventricular tachycardias and arrhythmias. I underwent six ablations. I understand that you don't want to take meds for the rest of your life - neither did I. Now I am, once again, because I have had some complications after which my EP said he's never going to do an ablation again; I'm on Propafenone at the moment.
But sometimes meds are good to buy you time. So, if your EP says that your EATs will be difficult to ablate, buying time is important. Maybe in two years ablation techniques will be so advanced that even very difficult EATs can be mapped and ablated successfully.

An AV-node ablation is something that can't be reversed, it's a decision for your whole life. And the thing is, being paced permanently in the ventricles can lead to heart failure and atrial fibrillation. Now, at the age of 26 you have so many years ahead of, so many years you will be paced in the ventricles, that you are at a higher risk of getting those complications.

So, if I were you, I would give the meds another try, even if it's just for buying time. I know many patients who tolerate Flecainide very well and for whom it's working well.

Best wishes
Inga

More options than you realize

by Angelie - 2010-05-02 03:05:09

I'm 34, been having problems most of my life, but symptoms didn't get debilitating until I was around your age.

I have tried every drug known to man, and like you had low blood pressure. Although it was frustrating and an extremely long process, I do not regret trying every medicine that I could try.

Have you tried Tikosyn? Sotolol? Flecainide? Are you doing everything in your power to control possible triggers. Stress? Caffeine? Decongestants? I know it's hard being young with these problems. I know it's hard to take "old people" medicine while you're young, but it is worth a shot.

Ablations are VERY expensive. I haven't had one that was less than 50 THOUSAND bucks. Just one of those catheters that they use for your ablation can run you about 12 grand, and they always use more than one. I guess when you weight the pros of trying to get back to "normal" the cost is not that high, but sometimes you go through ablations and it doesn't work. Sometimes ablations work for about 6 months and then your heart re-programs itself and old symptoms return. Sometimes ablations work wonderfully forever, or for years until your heart decides to pick another arrhythmia (which was my case).

I've had 6 ablations within the last 7 years, and 4 pacemaker surgeries within a year and a half. There are risks in having ablations. I lived with a paralyzed right diaphragm for over a year and still have residule effects from that ablation where my phrenic nerve was hit by a cryo-ablation catheter.

I've had Atrial Tachycardia, Inappropriate Tachycardia, Atrial fibrillation, Atrial Flutter, Ventricular Tachycardia, Brady-Tachy Syndrome, Bradycardia, and now my sinus node is so shot that my AV node kicks in for my sinus node if it wasn't for my pacemaker kicking in. My underlying rhythm now is Junctional for the time being. LOL.

My EP tried like hell to avoid ablating my AV node. My AV conduction is wonderful- it's just the sinus node that was all messed up. Now that my sinus node has officially thrown in the towel, and my EP repositioned my atrial lead I for the most part don't have any more problems. While I was in constant flutter my atria was beating at about 300bpm while my ventricles were beating at about 150. My EP went in and successfully ablated that flutter, but he told me that if he couldn't get the flutter in that procedure that he would finally just do the last resort which was ablate the AV node. I'd still be in flutter, but I wouldn't feel it because the pacer would be controlling my heart rhythm from then on out. I was tired and feeling so awful that I was hoping that my AV node would be ablated and then I would never have anymore problems again. Turns out he got the flutter, and didn't ablate my AV node. I was so disappointed that I cried and so upset with my doctor that I couldn't even talk to him or look him in the eye. In retrospect, I couldn't thank him more for saving perfectly normal tissue(my AV node). I am SO GLAD that I still have some of my heart's normal function. After my flutter ablation, my sinus node just simply quit working. I don't know if it just got tired from going so fast all the time, or if I had been through so many ablations that it just got burned out. Anyways, it was a mixed blessing. I no longer have anymore fast rhythms, but I'm 100% atrial paced. My pacemaker kicks in and starts my heart rhythm and my OWN heart finishes what the pacemaker started. We are young........keep your heart doing as much as it can for as long as it naturally can. Sometimes, there are no other options, but I believe you still have a few to choose from. Don't destroy healthy heart tissue unless you absolutely have to. It seems to me that alll of your problems are stemming from your atria meaning that you most likely have wonderful conduction and your AV node is working just fine.
I know taking meds everyday is no cakewalk, but neither is having a tiny computer determine your body's heartrate. It does take some adjusting. I'm still not quite used to it, and it's been over a year.

If I were to ablate any node it would be my sinus node first. Ask your doctor about it. Ask your EP about your AV node health. If your AV node is fine and all of your problems are coming from an unruly sinus node than deal with the problem node- NOT the one that's behaving.

Think about it. I hated my doctors for dancing around and threatening me and dangling AV node ablation over my head. I was feeling so miserable, quite honestly I didn't care much what they did just as long as it meant feeling better. There are never any guarantees at feeling better, and a doctor can never guarantee "fixing" you. Now I thank my doctors for being so cautious, and I'm going to try to keep half of my OWN heart working for as long as I possibly can.

Although a God send technology and really not that big of a deal to adapt to pacer life, pacemakers do however have their own set of complications as well.

I know your frustration, but really do think about everything before you allow your EP to play Space Invaders in your heart. One heart you have, and that's it. Once you ablate your AV node there's no turning back EVER. Not if around the corner there's a new treatment that comes out, new technology, or next year a new medicine....nothing. What's done has been done. Help your heart work by artificial means if it needs it, but allow it to work naturally if it can.

Feel free to message me if you have any questions. I've been down a mighty long road for a "youngster".

Welcome,
Angelie

ectopic atrial tachycardias

by golden_snitch - 2010-05-02 04:05:57

Hi Jules,

first of all I want to tell you that I have had two ectopic atrial tachycardias, and they were both ablated successfully. Yes, the whole procedure took a long time, almost 10 hours, because these tachycardias were hard to map but once my EP had them, he was able to proceed and ablate them. The whole ablation equipment, especially the mapping techniques are so advanced today that I haven't heard of many patients whose arrhythmia could not be ablated. So, if you have a good, very experienced EP there is still a chance that your tachycardia can be ablated. May I ask which meds you have tried so far?

If you should, however, end up with having to make a decision about an AV-node ablation, there is not much to worry about. First of all, pacemakers hardly ever fail completely. Also, if you don't have an AV-node, there is in most cases still a ventricular rhythm beating at around 20-40bpm. You might pass out but you will not just drop dead; at least the likelyhood is very, very low.

Hope this helps a bit.
Best wishes
Inga

Thanks

by Jules1983 - 2010-05-02 09:05:12

Thankyou all for your input. I do understand the permanancy of the av ablation. I am not satisfied with the way treatment is going and am really investigating all options. I like to know what I am talking about and even make suggestions when I go for appointments with the cardiologist or EP. As for the financial downside of multiple ablations....living in Canada, I really don't have to worry about that thankfully but instead have to deal with the ridiculously long wait times. I find that because I am young, the recommmeded treatment path seems to be different than perhaps an older person with the exact same condition and it comes across as being scared off by my age. As for the antiarrhythmics vs betablockers. Is one more standard over the other in treatment of ectopic atrial tachycardia? If antiarrhythmics work better, then why would they not be suggested or offered?

add

by golden_snitch - 2010-05-03 03:05:29

Betablockers often don't work in the treatment of EATs, there is a good info on what works at:
http://emedicine.medscape.com/article/151456-treatment

We are young, too!

by golden_snitch - 2010-05-03 03:05:42

Hi Jules,

I have no idea why your cardio or EP hasn't suggested for example Flecainide. I mean, it can like most other anti-arrhythmic drugs, have some serious side-effects, especially a pro-arrhythmic effect but only in patients who have already suffered a heart attack; those who have a damaged heart muscle. I got Flecainide for my ectopic atrial tachycardias before I underwent ablation, and it worked well.

Angelie and I were young, too, when we started to have all those arrhythmias, and we are still young compared to the "average" heart patient. I was 17 when I was diagnosed with permanent sinus node re-entry tachycardia, had my first ablation shortly before my 18th birthday; other arrhythmias followed. I'm 28 now, have a pacer and am on Propafenone.

As Angelie said I would make sure I had tried all meds that are on the market before deciding to have the AV-node ablated.
And regarding the sinus node: mine was ablated because it was just way too fast and didn't respond to meds, and I know a couple of other patients who had permanent sinus tachycardia and underwent ablation, too. None of us got out of it without needing a pacer and for none of us it was the cure, we all developed more arrhythmia afterwards. My sinus node keeps growing back, even after having been ablated four times with more than 120 radiofrequency "burns", and I know some other patients who have that problem, too.

With ectopic atrial tachycardia there really should not be any talking about ablating nodes that part of our conduction system. I don't know any EP - and I know many - who would ablate an AV-node and put in a pacer in a 26 years-old without having tried different meds, and without having tried to ablate the ectopic atrial tachycardia. So, for now I would say: Don't even think about ablating the AV-node, you have so many other options.

Best wishes
Inga

Thanks

by Jules1983 - 2010-05-04 02:05:53

Thanks for all of the advice. I feel better prepared when I go for the next consult with the EP which is not until August. I can't believe that is the first available opening. I am going to inquire about switching to an anti-arrhythmic instead of the ineffective betablocker. We'll see what they say then.

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