multiple Ablations/modifications

How many have had more ablations/modifacation after they had there pacemakers place in?

I am just curious, I had 2 sinus node modifications, 2 ablation near my SA node, then my pacemaker installed and 1month later an AV node Ablation, now docs wanna go back in and quote be more aggressive quote sence I already have a pacemaker.. My EF is like 40-45, I have mild distolic function, moderate global hypokinses, Mild Regurgitation in all of my valves, and being my heart is still at rest 114, per 24hr holter,They wanna go in again. how is it possible my heart rate is still high, even while sleeping the report stated it dropped down to 63 once and stayed in the 90-100 while sleep. Average was 123 for 24 hrs holter, 5 ablation and I am back to where i started at.

Do some think the more we let them burn at our hearts the more damage is actually done? I wonder my last echo was the worst of all. I went to my Appt yesterday, And I'm like telling them i feel like ( no offense) like I'm like a 60 yr old. I am 27 and when I be out with my 3yr old I be so exhuasted. I'm exhausted all the time, he said well your heart is at the olympics so that why, ha ha ha, I said oh really with a atraight face.

The EP docs of course was gitty about going in, he has full court to do anything you know.
I just feel by now I should be at 40 bpm right? So They said my heart isn't weak enough for a CRT, and that I don't have VT for a ICD, SO basically I either let them back in to reburn what they reburned the first 5 times, or cont to feel lousy and on the max meds, but oh when u do come for you pm replacement, by that time you should be ready for a CRt device, so let my heart get worst before you would wanna place that in but it's ok to have a 6th try at burning and lasering at my heart.

Ugh.. what is a girl to do?
Thanks for the EAR...
Charly

7 Comments

Multiple ablations

by golden_snitch - 2009-09-25 01:09:00

Hi Charly!

Have had two sinus node modifications, followed by complete sinus node ablation, six weeks later the pacer was put in. Needed three more ablations after that to cure av-nodal-reentrant tachycardia, two ectopic atrial tachycardias and atrial flutter. Got a break afterwards. Now I'm having arrhythmia (though not that much tachycardia) again, and am on Amiodarone.

I have had a very rare but really bad longterm complication from the sinus node ablations, and so did amanda (scadnama): superior vena cava syndrome which required open heart surgery. All the scar tissue from these ablations blocked the superior vena cava. So, be careful with letting them ablate near the sinus node again. Maybe you can ask them to do a CT with contrast dye first to check if your vein is still wide-open.

Also, one of my EPs once stated that he feels that whenever they go into my heart and ablate something, the heart kind of "fights back", and that the ablations trigger new arrhythmia to occur. Ever since I developed the superior vena cava syndrome and underwent surgery, ablations are a no-go for me. My EP wouldn't do any more, and I don't want them to. Today, after all what's happened, I believe that to keep ablating again and again doesn't really solve our problem.

Are you on any meds? Have you tried Ivabradine (direct sinus node inhibitor)?

Best wishes
Inga

Hmm Meds

by CharlyB - 2009-09-25 03:09:20

Well I've been on the Max for Sotalol, and Flecanide, I'm currently on 360 of Ditiazam, and the max for Metrolol, lisinopril and i'm also Midrine. I was just taken off sotalol, for not working.I've tried Atenolol, Lopressor as well.

I'm like wouldnt an ICD being it has the Anti-tachycardia pacing be better than this dual pacemaker since it's basically worthless since I'm NEVER brady . Cause I would prefer that since it can pace your heart back down to a normal hr,, and if it could'nt then thats when it'll shock you, instead of them jacking up my heart with burns and adding more damage to an already damage heart...

Anti-tachycardia pacing

by golden_snitch - 2009-09-25 04:09:49

Hey,

I don't think an ICD would work for you. It can stop or pace down a VT, but as long as you "only" have SVTs, nothing will happen. Anti-tachycardia pacing is referred to ventricular tachycardia, not atrial. At least that is my understanding. And a CRT wouldn't help with this kind of tachycardia either. So why have a new device put in? I would rather think you are feeling lousy because you are in tachycardia all the time, and not because you have an EF of 45% (mine is around that, too) or some mild regurgitation of all valves.

I have had permanent tachycardia with a resting rate of 120-140bpm, and it definitely made me feel lousy. They also say that my pericard looks like I have been through a pericarditis, my ventricular septum is not moving, I have a mild mitral and tricuspid valve regurgitation - BUT when they were finally able to slow the rhythm down, I felt soooo much better. The rest is no problem, it was the fast heart rate that made me feel so bad.

Have you tried Amiodarone? I never wanted to take it, and it's only meant to bridge the time until the Multaq is available for me (not approved in Germany, yet), but at least it works for now. No other meds, just this one 5x200mg per week. I know some patients for whom it did the trick or at least bought them some time. And since you are in the U.S. you could even get the Multaq and wouldn't have to try the Amiodarone with all its really bad, sometimes irreversible adverse effects. It's a multi-channel blocker so instead of taking different anti-arrhythmic meds you would just have to take this one - it's all in one. Probably worth a try before you let them go in and ablate again.

I can understand how very frustrated you are - been there, done that. Have you ever considered getting a second opinion or actually got one? And why did they implant this pacemaker when you say it's useless because you are never in bradycardia?

Hang in there!

Inga

Multiple Ablations

by scadnama - 2009-09-25 05:09:04

Hello there!

I know that Inga mentioned me in her previos comment, but I just wanted to chime in.

I have had 5 ablations. Two were sinus node modifications, one was a complete sinus node ablation, one for av node re-entry tachycardia, and one for ectopic atrial tachycardia. After my complete sinus node ablation, I too ended up with Superior Vena Cava Syndrome. I under went open heart surgery 6 weeks ago to repair it, and it has not been a fun ride.

What is your diagnosis? Do you have IST?

At this point, I am over 95% dependant on my pacemaker, and I feel much better than I did before. SVC Syndrome is a very rare complication, and does not happen to everyone who has multiple ablations, but I just wanted to share my experiance.

Hope you get some relief soon! Hang in there!

Take care,
Amanda

The final fix

by ElectricFrank - 2009-09-25 07:09:15

They ablate your whole heart and install an artificial one.

frank

Good one Charly

by ElectricFrank - 2009-09-26 08:09:56

I like that!

One thing to watch is doctors simply checking all the blanks on a diagnosis sheet. When I developed the AV Block it was obvious on my ECG that my ventricles weren't following my atrium, but all else was working fine. My atrial beat was in the 70-80 range and reacted to exercise. My ventricles just plodded along at 35-40.

Imagine my surprise when I picked up a copy of my hospital records and found:

Complete heart block
Partial heart block
Sick Sinus Syndrome
Variant Angina

It seems that the cardiologist had just checked everything he could. I challenged it at my next appt and he danced around. What finally did it was when I called his nurse for an appt to turn off rate response and change the upper limit for 120-150. Her response was "Oh you can't do that with your angina and SSS". I insisted on an appt and then wrote a letter challenging the Angina and SSS stated that I would schedule a meeting with the appropriate person in charge of medical records to straighten it out if it wasn't changed by the time of my appt with him. I also noted that if the incorrect diagnosis sheet was EVER supplied to any other medical facility, even in error, I would bring legal action.

I wrote a second letter stating that based upon my corrected diagnosis I wanted my pacemaker settings changed as requested or he was to contact me before the appt so I could find another cardio.

As near as I know the records have been changed and I have been living with new settings for nearly 5 yrs.

frank

In Reply to Frank, Igna, Amanda

by CharlyB - 2009-09-26 11:09:05

I have been diagnosed with SVT, AFib, IST and AT and Ist vs AT, ohh and previously CHF, due to an echo that showed 37% EF and elevated BNP. I have gotten nurmerous 2nd opinions and that could be why they are attempting me to be on my 6th ablation. I got admitted and placed On Iv lasix,and placed on lisinopril, and f/u with my doctor who wanted to repeat the echo which showed 40-45% ef and said nope you don't have CHF its just that we need to get rid of that fast hr for good so lets take out the SA node.So I am going for another second opinion and see what they say. I just moved to tampa, so I don;t really know any good doctors.

Frank: i said the same thing to the doctors, I said so you wanna keep ablating until I need a heart transplant. They just stared and I said Ok, I will call and make the appt and called another doctor in Tampa and on Oct 15th I will find out what he says. I will also ask about those meds you guys were talking about as well.

To believe that this all started from an allergic reaction to PCN and Cardiac arrest later I have these heart problems, I was told never to conceive again, because I had to stop my meds went into AFIB and had my daughter early at 27weeks 1pound 5ounces due the AFib.
So I really just wanted to hear if anyone has been in my shoes and what they did, because I have been doing this since 2000 and doesn't seem like its getting any better.
Charly

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