New here long term Tikosyn good idea or not

[vazjim]

I had two rf ablations in 2000. Neither were successful however condition improved to point in a few years was able to discontinue Diltiazem. Af has been more problematic for a few years so new ep started me on Tikosyn with the plan to repeat rf ablation in a few months. Now he has changed his mind and wants to just keep me on Tikosyn as he thinks that there wouldn't be anything left to ablate. I am not sure about long term use of Tikosyn and would like to possibly try another ablation. Any advise or similar experience?

[harmonykm]

Everyone has their own opinions about ablations in particular. My husband isn't a fan and will probably never have one since there are so many other options. His first cardiologist had him on diltiazem and almost killed him. Not good! I lost my job and my hubby started drawing on his VA benefits. The first thing they did was a blood draw and told him to cease taking the diltiazem at once. I can't remember what his VA doctor put him on for the next two years, but it really didn't help very much. Finally, in January we was referred to a cardio specialist at the VA in Tucson. He was monitored very closely for three days as they worked on making sure he had the right amount of tikosyn in his system. It has worked very well for him. He has also be wired with a pacemaker/ventricular defibrillator. It has a special box that can transmit data to the VA if there is a problem. He goes in and out of a-fib, but he is feeling better now that he has since he was diagnosed with this issue. His quality of life is much improved. He still has his ups and downs, but it is definitely much better.

Karen

[vazjim in reply to harmonykm]

Karen, Thanks for the reply. I am also seen by the VA in Tucson (for the last 25 yrs) but was sent to outside Doc by the choice program (ie VA was not able to do ablation in a time required by new rules) This Doc started me on Tikosyn with the plan of doing another ablation in a few months, but on return visit decided to just keep me on Tikosyn indefinitely instead. So I am concerned about taking Tikosyn long term. Would rather go another ablation abd jet off meds if possible. Could you tell me the name of the Doc your husband sees at the VA in Tucson? Again thanks for the reply. Take care Jim

[harmonykm in reply to vazjim]

I don't know if Dr. Thal is still there, but that is who my husband saw at the beginning of the new year. He is an excellent doctor and is very good at what he does. I think his title is Electrocaridio Physiologist. Something like that. It is a very highly specialized area of cardiology. According to what we found out, there isn't any way, in our particular case, that my husband will ever be able to get rid of meds.

[vazjim in reply to harmonykm]

Thanks again. Will see if Dr. Thal is still there. Take care. Jim

[BobD Volunteer]

Tikosyn is only available in USA not in Europe or Australia so since we are predominately a UK organisation we can't comment on its use. Like flecainide it needs to be started under controlled conditions in hospital as it can introduce potentially fatal ventricular arrhythmias I understand.

By the way I had three ablations before my AF was sorted.

[vazjim in reply to BobD]

Thanks for reply. Am aware of what you stated just wondering about long term Tikosyn use. I am in favor of another ablation , just seeking info. Thanks again

[harmonykm in reply to BobD]

Wow. Sometimes it take a long time. I know it's been a long bumpy road for my husband. You are correct. The conditions have to be very controlled. He was in the hospital for three days while that was sorted out. Tykosin works for him. It's the best he's felt in over five years. ~Karen

[vazjim in reply to harmonykm]

Thanks

[Hidden]

I have been on tikosyn and a low dose of diltiazem for about two years and it has been a godsend. My heart is almost always in sinus rhythm now and because of this a very leaky valve has essentially healed itself. I am not aware of any side effects, and my doc says I can stay on the drug indefinitely. I am 83, exercise a great deal and lead a very active life. I have had three ablations and none of them were completely successful.

[vazjim]

Thanks for the reply Trish19.I am only 68 and also very active but have a number of other health concerns along with the afib. Take care. Jim

[GolfMyrtleBeach in reply to vazjim]

I am also 68 and am scheduled for hospital July 5 for Tikosyn initiation. 3 other drug regimens have failed to keep me in NSR for any length of time. Rythmol, Betapace, etc have not worked and I have also had two ablations at Duke Heart Center - all to no avail and been told I have a very stubborn case.. I am curious if your Tikosyn experience has still been a positive one.