Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 Hello I've been in AF for about 6 years now and was told this week that since I've been in AF so long that a catheter ablation probably won't cure the AF. My question is, is the Maze procedure successful on a person that's been in AF so long? If so, who do I contact to get the Maze done? I live in S. California and have Blue Shield PPO Insurance. Also, my AF has become so bad over the last few weeks that I can hardly function. Are there other AF sufferers that aren't able to work? If so, how do I convince my doctor that I feel too weak to be on my feet 9 hours a day doing physically hard work? I'm on disability right now for a bleeding ulcer, a mild heart attack, and an angioplasty but the doctor seems to think that I can return to work in a week. I'd be devastated if I return to work and lose my job because of being weak and losing my disability also. Thanks in advance for your help. --------------------------------- Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2006 Report Share Posted May 11, 2006 , it sounds like you need to get some help soon. I know know much about any of these surgeons in Cal. but here is a list of 4 that I have listed on my web site. I also have some of the listed surgeons's personal page that tells a little about them. You are welcome to view all this in the LINKS on AFibcures web site. http://health.groups.yahoo.com/group/A-fibcures/ Best wishes Jack Dr. Burdon and Dr. Fann of Stanford Palo Alto Veteran's Hospital ______________________________________________________________________ Dr. Chang (only does the Maze with valve repair) San Francisco, CA UCSF ______________________________________________________________________ Dr. Gaudiani 2900 Whipple Ave. Ste 210 Redwood City, CA 94062 ______________________________________________________________________ Dr. Alden H. Harken Institution: University of California, East Bay E-mail: harkena@... Mail: 1411 East 31st Street Oakland, CA 94602 United States Phone: 1 510 437-4091 Fax: 1 510 437-5127 > > Hello > > I've been in AF for about 6 years now and was told this week that since I've been in AF so long that a catheter ablation probably won't cure the AF. My question is, is the Maze procedure successful on a person that's been in AF so long? If so, who do I contact to get the Maze done? I live in S. California and have Blue Shield PPO Insurance. > Also, my AF has become so bad over the last few weeks that I can hardly function. Are there other AF sufferers that aren't able to work? If so, how do I convince my doctor that I feel too weak to be on my feet 9 hours a day doing physically hard work? I'm on disability right now for a bleeding ulcer, a mild heart attack, and an angioplasty but the doctor seems to think that I can return to work in a week. I'd be devastated if I return to work and lose my job because of being weak and losing my disability also. Thanks in advance for your help. > > > > > --------------------------------- > Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 - I believe some of the big heart centers, such as Cleveland, are now doing ablations on permanent patients with very good results. You may not see a " cure " but you may see a significant improvement of the burden of your afib. You might want to call out there and get their opinion on both ablation and maze and see which they think would suit you best. Do you have good rate control while in afib? I had lousy rate control, and wouldn't have been able to get off the couch, had I not been able to control it. While in afib it was an effort to just take a shower, let alone actually work. I also get very headachy while in afib, and my mental capacity goes out the door! I had an ablation almost 11 weeks ago, and so far I'm doing quite well. I was somewhere between paroxsysmal and persistent afib, though, but quickly heading down the road to permanent! Stef Baird patbaird2@...> wrote: Hello I've been in AF for about 6 years now and was told this week that since I've been in AF so long that a catheter ablation probably won't cure the AF. My question is, is the Maze procedure successful on a person that's been in AF so long? If so, who do I contact to get the Maze done? I live in S. California and have Blue Shield PPO Insurance. Also, my AF has become so bad over the last few weeks that I can hardly function. Are there other AF sufferers that aren't able to work? If so, how do I convince my doctor that I feel too weak to be on my feet 9 hours a day doing physically hard work? I'm on disability right now for a bleeding ulcer, a mild heart attack, and an angioplasty but the doctor seems to think that I can return to work in a week. I'd be devastated if I return to work and lose my job because of being weak and losing my disability also. Thanks in advance for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Hi Stef What meds did you take to control your rate, I also have lousy rate control, I am on a small dose of atenolol but it is not controlling the rate, it is not as bad as previously but I get break throughs several times a day. My afib is not 85% of the time, that just leaves 15% normal sinus rhythm, my GP is now contacting the hospital and to see if my appointment with the EP can be sooner. I have to agree with you about mental capacity going out of the Door. I have my accounting exams coming up in June and have 2 3hour papers to sit, I am finding the revision difficult but must get on with it as I really want this qualification. I do not want to have an AV node ablation but would consider a PVIA or maze, I am not sure whether they would consider me for the PVIA with so much afib, I think that maybe I should have been referred to the EP before now. ine Re: Maze versus Catheter Ablation - I believe some of the big heart centers, such as Cleveland, are now doing ablations on permanent patients with very good results. You may not see a " cure " but you may see a significant improvement of the burden of your afib. You might want to call out there and get their opinion on both ablation and maze and see which they think would suit you best. Do you have good rate control while in afib? I had lousy rate control, and wouldn't have been able to get off the couch, had I not been able to control it. While in afib it was an effort to just take a shower, let alone actually work. I also get very headachy while in afib, and my mental capacity goes out the door! I had an ablation almost 11 weeks ago, and so far I'm doing quite well. I was somewhere between paroxsysmal and persistent afib, though, but quickly heading down the road to permanent! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2006 Report Share Posted May 12, 2006 Hi ine - are you on rhythm control drugs as well as the atenelol? If not, it sure sounds like you need to be and that's the first thing I'd ask for when you see your doctor. I take 100 mg atenelol still, which keeps me slow while in NSR. None of the drugs I've been on or given do much at all to slow me down when I'm in afib. Cardizem will work IV, but the dose has to be high, and as soon as it's lowered my rate goes back up! And I never ever convert with it either, so when I get an ER doc who insists on trying drugs (vs cardioversion) first, it's always a giant waste of time! The only drug that ever worked to slow my rate down consistently DURING a lengthy afib event is digoxin. It's not supposed to be a rate control drug, but it's the only one that has ever worked for me. I don't know why it's overlooked so often in favor of things that don't work! Stef ine pj.gilmartin@...> wrote: Hi Stef What meds did you take to control your rate, I also have lousy rate control, I am on a small dose of atenolol but it is not controlling the rate, it is not as bad as previously but I get break throughs several times a day. My afib is not 85% of the time, that just leaves 15% normal sinus rhythm, my GP is now contacting the hospital and to see if my appointment with the EP can be sooner. I have to agree with you about mental capacity going out of the Door. I have my accounting exams coming up in June and have 2 3hour papers to sit, I am finding the revision difficult but must get on with it as I really want this qualification. I do not want to have an AV node ablation but would consider a PVIA or maze, I am not sure whether they would consider me for the PVIA with so much afib, I think that maybe I should have been referred to the EP before now. ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 Hi Stef All the drugs I have been on over the last 4 years have all made me feel worse including Atenolol. I have been on sotalol amirodone, flecainide, propranolol and I am now back on Atenolol but only a small dose. I saw my GP yesterday and he was going to contact the hospital, he said to give him a ring if I don't hear anything in a week. I have never been on digoxin and it has never even been mentioned to me. I am really lucky in a way as the doctors have already agreed that cardioversions in my case are a waste of time. I am a bit apprehensive at trying new drugs because of my experience with sotalol, up till then I have been symptom free, with days of taking sotalol I pass out, it really made me feel worse, the doctor halved the dose and that did not help, I have a 24 hr holter monitor and admitted to hospital straight away with heart pauses and bradycardia. What really annoys me is when the cardiologist says " try this drug, small dose to start with, you may need to increase it and come back and see me in 3 months " . 3 months is a long time especially if it is the wrong drug. ine RE: Maze versus Catheter Ablation Hi ine - are you on rhythm control drugs as well as the atenelol? If not, it sure sounds like you need to be and that's the first thing I'd ask for when you see your doctor. I take 100 mg atenelol still, which keeps me slow while in NSR. None of the drugs I've been on or given do much at all to slow me down when I'm in afib. Cardizem will work IV, but the dose has to be high, and as soon as it's lowered my rate goes back up! And I never ever convert with it either, so when I get an ER doc who insists on trying drugs (vs cardioversion) first, it's always a giant waste of time! The only drug that ever worked to slow my rate down consistently DURING a lengthy afib event is digoxin. It's not supposed to be a rate control drug, but it's the only one that has ever worked for me. I don't know why it's overlooked so often in favor of things that don't work! Stef ine pj.gilmartin@...> wrote: Hi Stef What meds did you take to control your rate, I also have lousy rate control, I am on a small dose of atenolol but it is not controlling the rate, it is not as bad as previously but I get break throughs several times a day. My afib is not 85% of the time, that just leaves 15% normal sinus rhythm, my GP is now contacting the hospital and to see if my appointment with the EP can be sooner. I have to agree with you about mental capacity going out of the Door. I have my accounting exams coming up in June and have 2 3hour papers to sit, I am finding the revision difficult but must get on with it as I really want this qualification. I do not want to have an AV node ablation but would consider a PVIA or maze, I am not sure whether they would consider me for the PVIA with so much afib, I think that maybe I should have been referred to the EP before now. ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 13, 2006 Report Share Posted May 13, 2006 ine, my wife has been on dig for years and has had no side effects. It does a good job for her. I agree that starting a new drug and " see me in 3 months is a long stretch " . If I recall that approach created some problems for you in the past. I have come to appreciate that squeeky wheels get the grease, and have better outcomes too. I hope that, and am confident that you will keep your doc appraise of any problems and questions. Best wishes, ine pj.gilmartin@...> wrote: Hi Stef All the drugs I have been on over the last 4 years have all made me feel worse including Atenolol. I have been on sotalol amirodone, flecainide, propranolol and I am now back on Atenolol but only a small dose. I saw my GP yesterday and he was going to contact the hospital, he said to give him a ring if I don't hear anything in a week. I have never been on digoxin and it has never even been mentioned to me. I am really lucky in a way as the doctors have already agreed that cardioversions in my case are a waste of time. I am a bit apprehensive at trying new drugs because of my experience with sotalol, up till then I have been symptom free, with days of taking sotalol I pass out, it really made me feel worse, the doctor halved the dose and that did not help, I have a 24 hr holter monitor and admitted to hospital straight away with heart pauses and bradycardia. What really annoys me is when the cardiologist says " try this drug, small dose to start with, you may need to increase it and come back and see me in 3 months " . 3 months is a long time especially if it is the wrong drug. ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2006 Report Share Posted May 18, 2006 Hi ine - I'm just going back through some old unread emails and wanted to respond to you.. .I took Sotolol and felt barely better than death warmed over.. it was really really horrible. I gave it a month and couldn't stand it a day longer (plus I was going to the beach and no one wants to feel bad at the beach!). I went from that to Cardizem, which never seemed to do a whole lot, but it also did not make me feel bad. My best drug was dofetilide, which worked like a charm with ZERO side effects.. no lethargy, no nausea, no depression... just nice NSR. I am now on Rhythmol (propafenone) which is ok as well... it gave me a bit of a hangover feeling the first several weeks I took it, but now that's gone, thankfully. I do have some lethargy, whether from the atenelol or rhythmol, I don't know. but YUKO on Sotolol.. I hated that. I also hear you about leaving and coming back in 3 months. If your doctor experienced what you are experiencing, he would not ask you to wait so long! Stef ine pj.gilmartin@...> wrote: Hi Stef All the drugs I have been on over the last 4 years have all made me feel worse including Atenolol. I have been on sotalol amirodone, flecainide, propranolol and I am now back on Atenolol but only a small dose. I saw my GP yesterday and he was going to contact the hospital, he said to give him a ring if I don't hear anything in a week. I have never been on digoxin and it has never even been mentioned to me. I am really lucky in a way as the doctors have already agreed that cardioversions in my case are a waste of time. I am a bit apprehensive at trying new drugs because of my experience with sotalol, up till then I have been symptom free, with days of taking sotalol I pass out, it really made me feel worse, the doctor halved the dose and that did not help, I have a 24 hr holter monitor and admitted to hospital straight away with heart pauses and bradycardia. What really annoys me is when the cardiologist says " try this drug, small dose to start with, you may need to increase it and come back and see me in 3 months " . 3 months is a long time especially if it is the wrong drug. ine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2006 Report Share Posted May 19, 2006 Hi Stef I sometime wonder if I had sotalol induced bradycardia, I was very naïve at the time having never heard of afib. I would not mind trying dofetilide however it is not licensed in the UK, so I will need to find a drugs trial or a doctor that can prescribe it, that is a question that I can put to the EP when I see him on July 5 I think if the doctors that are treating us had to spend one week with the symptoms of afib and the drug side effects they would think again how they treat their patients. ine RE: Maze versus Catheter Ablation My best drug was dofetilide, which worked like a charm with ZERO side effects.. no lethargy, no nausea, no depression... just nice NSR. but YUKO on Sotolol.. I hated that. I also hear you about leaving and coming back in 3 months. If your doctor experienced what you are experiencing, he would not ask you to wait so long! Stef Quote Link to comment Share on other sites More sharing options...
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