Dear ccu,
Dr. Jackman is one of the best in the country so I'm not sure what I will have to add. Your doctor may want to talk to Dr. Natale here at the Cleveland Clinic. His number is 1-800-223-2273 extension 44293. Best wishes.
Wow, I can surely sympathize with your situation. I am 33 and my story is almost identical to yours. I also had 2 ablations lasting about 10 hrs. The first one, my rate went up within 2 weeks also, had another which left me in a junctional escape rhythm. Very long pauses 7 seconds, and a rate of 20 -30bpm. Spent a great deal of time in ICU. Was put on coumadin because during the ablation it was discovered I had an atrial septal defect. They wanted to wait as long as possible to put the pacer in because they worried I would have a stroke. They were only able to wait a couple days. I had the pacer in on coumadin. Developed severe hemotoma, but only a few TIAs, no major stroke.
Now, like you I have the very high rate episodes, accelerated junctional, atrial tach, a-fib with aberancy and atrial flutter. I have been on every conceivable anti-arrythmic. Currently I am on amiodarone which I have been taking for 6 months. It is controlling my rhythm better than the others. Unfortuneately I am developing some toxic effects (neurological and liver). Big decision which treatment is left. I too, have been told that my next step is to ablate the av node. I am on coumadin and will be for the rest of my life I have been told. Oh, the other funny thing is I also have some type of pacemaker syndrome. It truly is a big mess isn't it? Can you fathom how similar our stories are. Mine all started during pregnancy. What was your original arrythmia that was ablated? Please email. I would really like to know what you end up doing. Have you tried amiodarone? Have your doctors said anything about it?
My email is tim-***@****.