need something done for a-fib

[irish46]

In October 2009 I had oh for avr and maze procedure for a-fib. Maze did not work and I am going in and out of a-fib enough that is affecting my life in a negative way. Sob, excessive perspiration, fatigue,etc.. It is almost as though I went thru it all for nil. I am on 850mg. of rhythmol daily, which does not seem to be helping. Now cardio electrophysicist wants to put pace maker in and a month later do node ablation. Has anyone had this or heard of it. Also I went into surgery with pulse of 60s-70s and now it is in 90s. I have been in cardiac rehab for three months and pulse has not gotten better. The cardio electophysicist I saw said he had put a note in my chart not to do anything for a-fib when surgeon did avr. He said that now that they went ahead and did it, it made his job harder and more dangerous for me. When his nurse called me to tell me they wanted to schedule the procedures I said I wanted to put on hold and get second opinion. Now I need to do research to find someone. I would appreciate anyone who can tell me of good experience with dr and facility. I have heard good things about Houston, TX, Mayo in MN and Cleveland Clinic.
Thank You for any light you can shed on this Irish46

 

[catwoman]

Irish:
Sorry you're going through all of this. A-fib is not fun, and from what I've read, the maze doesn't work for everyone. My husband had a-fib with his MV repair 3 years ago. The surgeon tried amiodarone in the hospital and sent him home on warfarin. He took it for 7 months, then was taken off.
Where did you have your AVR? Where are you located in Missouri? Barnes Jewish -- I think that's the name -- is very highly rated and is in St. Louis; therefore, there should be some very good cardios in that area. We should have some members here who have been to cardios in St. Louis. I may also be able to get some names from a relative who works in the health industry there and PM them to you.
Houston has several very good heart hospitals (Methodist and St. Luke's/Texas Heart Institute), and of course there are the Mayo and Cleveland clinics.
From what I've read in posts, the Maze doesn't always work. Perhaps your doctor can get some consults via e-mail from someone at one of these institutions.
Good luck. Keep us posted.

 

[jax]

Irish:

A pacemaker will not help A-Fib. Atleast it doesn't in my case. I had a pacemaker placed 5 days after my valve replacement due to complete heart block. It may help if there is a difibrillator attached to it, however a plain old pacemaker doesn't help. I don't get alot of episodes but then i am on metoprolol for it and although it does help a bit. It hasn't completely taken it away. I hear you on the side effects of a-fib, it definitely isn't fun. Thankfully mine doesn't normally kick in until I am resting but there have been time that it has happened while i am at work and it has made me feel so awful. Best of luck to you.

 

[Nancy]

Joe had a pacemaker and also had chronic afib, so as Jackie said, they don't work well for afib. He was on all kinds of heart medications, but they could do nothing for his afib, so he just lived with it. Sometimes it corrected itself, but then went back again. I hope there is something that can be done for yours.

 

[irish46]

Catwoman,
Thanks for reply. I think I am just having a hard time accepting the fact that I am going to have to have more done. I have been in denial, which, while I knew something would have to be done, it really had not hit home until dr said it was time. I had myself so pumped-up when they did my valve and Maze, I just knew I would come out, grit my teeth, do what I needed to do and be all better!!! Things just did not work that way, and am having a bit of a problem getting myself geared up for another procedure. Irish

 

[irish46]

Nancy and Jackie Thank you for responding,
The reason for the pacemaker is that a month after getting it the dr wants to do ablation of av node. This will stop hopefully, some of communication between atrium and ventrical. If too much or all of communication stops, so does heart and I would then be totally dependent on pacemaker for life. This really has me spooked. Wish I could just go "hey do what you have to do. I'll be fine." Might be able to do that later, right now having occasional meltdowns!!!
Irish

 

[Lionheart]

Irish46,
Not much to tell you except I completely agree on the benefit of a second opinion from a high volume center with a doctor that deals specifically with A-fib type issues. You got through OHS once and you can get through this too. Hang in there and fight the good fight to get better.
Best,
John

 

[jax]

Irish:

now i understand why they want to put the pacemaker in. The procedure really isn't terrible. I was awake thorugh the whole thing with just medication to numb the area and to make me comfortable. i did notice when they were sewing it in that i had a lot of pressure but there was no pain. If you got through open heart surgery than having a pacemaker put in is a breeze. i just wish it would help the a-fib as well.

 

[ALCapshaw2]

I'm a bit surprised your Doc's haven't tried more medicinal approaches.
Several of our members have had Good Control of A-Fib with SOTALOL (generic form of BetaPace).
Then there is the SledgeHammer of Anti-Arrhythmics Amiodarone (and it's new less toxic alternative Multaq?)

I confess I don't know much about ablation or the Maze Procedure or Pacemakers, not having had any of them.

One of our Primary Guidelines is to find a Doctor with Lots of Experience with / in / doing the procedure YOU will need.

I think that is always Good Advice.

'AL Capshaw'

 

[neil]

hi irish..........as al said havnt there tried medidal approaches? i know amiodarone gets a bad press but it sure worked for me and many others i have talked to, maybe you have had it? keep us informed

 

[Mileena46]

I am on 100mg of Amiodarone a day and my heart is beating normally! yay! I know it has bad side effects, but I am willing to put up with those to stay out of A-Fib. You might want to ask your doctor about this or some other med he hasn't tried for your A-Fib.

Mileena

 

[debster913]

Just my two cents...I just started Multaq for A-Fib, and I feel fine on it. My cardio is trying it out on 12 of his patients to get a sense of how it works on both younger and older patients. You might want to discuss this with your cardio. By the way, my electrophysiologist, who I ALWAYS see before starting a new drug, also gave me the all-clear to start Multaq.