SVT-5 ablations-Atrial Tach.-Pacemaker-still problems

[mjbb]

Hi! I am 47 years old. Twenty-six years ago I started medication for my Lown-Ganong-Levine syndrome. After 20 years, the meds were not working. I had both the SA-node and the AV-node that was bad. They ablated. Six months later, they ablated again. Three years went by, and it was back. The doctor could not believe it! He did another EP study and ablation (Aug.'02). I began to have atrial fib. and tach. He did another ablation in Jan. ('03). It remained, so I started to try more medication (Sotalol, Flecainide, etc.). Sotalol made me sick and the Flec. didn't work! So he tried the 5th time to ablate, but ended up putting in a pacemaker. I feel good, yet everytime I do any exercise(mop, walk, etc.) and get my heart rate over 110, I go into atrial tach. or fib. They now have told me to either live with it, or go on another medication like Sotalol. Do you know if they have the atrial ICD out to try yet? Should I just live with it(what a pain, I can't do anything)! Or should I try the medication and rule that out???
Thank you,
mjbb

[CCF-M.D.-RCJ]

Mjbb,

Thanks for the post.

The atrial ICDs are available, at least for investigational purposes, but have not yet proven very effective.  In fact, the last study I read in the Journal of American College of Cardiology indicated that the atrial ICD patients actually spent MORE time in afib than the control group.

What other medicines might be effective for you is beyond my expertise.  You need to see a sub-sub-specialist (in Electrophysiology) at a large center to help guide further therapy.  New atrial fibrillation ablation techniques are available at some centers, such as the Cleveland Clinic or Univ of Michigan, and might be considered.

Hope that helps.

[mjbb]

P.S. I had an AV-node block along with the insertion of the pacemaker. Believe it or not, I have taught Aerobics for 15 years!! Now, what??
mjbb

[mjbb]

Thank you!!
After the third ablation for the SVT, the atrial fib. and tach. started. They tried making bridges using the ablation techniques (4th) by burning parts of my atria,and same with the 5th ablation, they tried another technique.  I guess they are stumped as to where to go with me now. Please keep me in mind if you hear of any new procedures, medications, or devices.
Thanks Again,
MJBB

[tlcjuliet]

Hi
Read your comments about sotolol making you ill.  When I was 23, they put me on sotolol for V.T.  The dosage was 180 mg twice a day.  It made me ill to start with, but I got use to it eventually.  Now 10 years later, I take 240mg twice a day, and it does help somewhat.  It no longer gives me asthma or makes me ill either.  Hope this helps

[mjbb]

Thanks Juliet,
I did not respond earlier because I was in the hospital for 4 days while they gave me my first doses of Tikosyn. This is a new anti-arrythmic drug with very few side effects. Since it is so new, I had to be hospitalized while they watched my eKg's and blood levels (for kidney disfunction, etc.). This, like Sotalol, can cause that sudden death arrythmia (Tors......)! Along with that, they gave me atenelol (which I had tried before and it did nothing). The combination seems to be working!!! I feel good and can move without my heart going into a-fib or a-tach. No side effects yet!!! Yeah!!!  If this didn't work, I was going to go back to Sotalol, especially after hearing what you had to say!
Thanks Again,
mjbb

[John Morales]

Hello, Well It looks like I found a place where maybe I can get some sympthy, advice, and help . I am a Veteran now of 6 EP ablation Studies in about 8 years including a tras-ceptal in february I think I spelled that right. My last ablation was about a two weeks ago and it appears that the ablations was a nightmare as he was close to the SN and the doctor fells that maybe some of the burns have caused some damage he said they did 60 burns all in the upper Q around the SN. As I now appear to have Sick Sinus Syndrome.

Here is a whats happened after the ablation my base HR was 108 this was on Tuesday morning it stayed that way until I was awoke on Thursday morning by the nurse becase my HR had suddenly dropped to 40 well I paniced (yes for me the world was comming to an end) my base rate stayed at 50 or so for another 5 days, After I went home I had 3 days of low HR in the 40 - 60 total. I got up on thursday and all of a sudded in was at 93 it has now been in the hi 80's to about 110 at rest,mostly sitting about 90  on top of that they had stopped my med which consisted of lopressor and flecinide, and Im getting alot of PAC skipps or pauses I should sayu that at the hospital the Dr. origonall wanted to put a pacemaker in I opted to wait as I was not happy with the outcome of the procedure.

So my Q is has anone had these types of probelms and how do you cope and what do you do, I wish I didnt feel every Beat and chaeck my rate every two seconds I dont sleep well as I fell all the pac and like many am afraid that my hear will just stop.

Well maybe Il like a few here frantic and lost.If anyone wiould like to contact me my email is ***@****

Thanks

John

[John Morales]

Hi I too have had now 6 EP ablatrion studies and am worse off now more than ever , would be interested in sepaking ot you, about your trials and experiences. PLease send an e-mail to me
John  ***@****


Hope you are well