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Fear of ablation and Wpw possible misdiagnosis
I saw a doctor because I my heart was racing 100-120 bpm in short frequent episodes 15-25times a day. It happened during ekg 5 minutes after a normal ekg and during ultrasound type test, and after seeing a cardiologist,I was referred to an electro cardiologist. He took one look at the ekgs..and declared I was Wpw syndrome after asking a few questions including how long had this been happening. I said my heart had raced my whole life but only once or twice a year till the past year. He wants to schedule ablation and has 40 years experience. I'm 67 and about to take a test for sleep apnea which I believe I have. I've waited two months for my appointment. I'm so drowsy for the past year I've even fallen asleep eating twice and during conversations. My blood and urine show no problems. I discontinued amlodipine 4 days ago because I saw it caused heart racing,and it's been much better. I was given metoprolol ER low dose last month and continue it. A chest X-ray report said early heart failure,but no one mentions that. I'm trying to eat just meat and fresh veg but I'm so very tired,I can hardly walk across the house.
I'm afraid he could be wrong and that the ablation will fail. Should I ask for that heart monitor for a day? I don't know where to turn. My children want me to get the ablation. I'm afraid of dying during it. Any advice. I'm praying.
I'm afraid he could be wrong and that the ablation will fail. Should I ask for that heart monitor for a day? I don't know where to turn. My children want me to get the ablation. I'm afraid of dying during it. Any advice. I'm praying.
Best Answer
You have a great way of understanding,Michele. Ok I will do as you say. I wrote tom about this too. What you said about the benefits outweighing the risks is what I'm trying to hold onto. I'll let you know what happens Monday. Thank you so much.
1 Comments
WPW is not the same thing as what the guy on YouTube is talking about. The secondary pathway he is talking about is into the avnode which is related to the type I had, avnrt but wpw is extra muscle fiber connecting the atria to the ventricles. So not the same thing. Not sure I agree with his theory and I am sure doctors would disagree as well but regardless if any extra pathway is causing an issue with rapid heart beat and it is causing too much wear and tear on the heart it is best to correct it for the long term health of the heart. Best of luck with the doctor and I am around if you have questions moving forward. Take care.
Thank you tom. I have been reading all day when I'm not sleeping. I will definitely read Jannie411. I have such mixed feelings.i just read where some person on a you tube video comment told the people who were watching the ablation process video that our hearts have the extra pathway in case the first one fails and that we are all idiots if we let someone destroy it. He said the racing is caused by a buildup of caffeine and junk food. I hope he's the the wrong one. I do believe consuming real food is a huge benefit to the body because before I let myself fall prey to sugar, I was losing weight,falling asleep less, walking better. I'm wondering if the CPAP will get me normal. Being a zombie is getting to me..depression, feeling useless , a burden. One thing is standing out from these comments...it wouldn't be detrimental to have the ablation...I'm so confused. I will tell you and the others how the dr answers the questions I've been given here to ask him. Bless you.
Hi again Michele,
I was happy to get your help and the tom's too. I called the electrocardiolodist's office to ask some questions,and the nurse called back to invite me back so the dr could assuage my fears. I wrote a bunch more to tom,and I'm writing you to ask if you could please let me know what questions I should ask when I see him again in your opinion. Michele, what you are doing here passing on your experience is so valuable to me and,I'm sure to others. You and tom are truly Angels. I had no one to turn to and so freaked out. I don't want to leave my family yet. Thank you so much..marcia
I was happy to get your help and the tom's too. I called the electrocardiolodist's office to ask some questions,and the nurse called back to invite me back so the dr could assuage my fears. I wrote a bunch more to tom,and I'm writing you to ask if you could please let me know what questions I should ask when I see him again in your opinion. Michele, what you are doing here passing on your experience is so valuable to me and,I'm sure to others. You and tom are truly Angels. I had no one to turn to and so freaked out. I don't want to leave my family yet. Thank you so much..marcia
1 Comments
From what you have described it sounds like it starts suddenly but that it is a gradual slow down. I am not sure this means you are having an svt episode. It is hard to say for sure. But if the nurse said that the cardiologist would not diagnose wpw simply by seeing the ekg then he feels fairly confident you have it. But maybe ask him to show you why he is confident explaining to him that your episodes don't have the sudden start and stop which is typical of svt. The thing is that you can have multiple issues at the same time and not really be aware. I had an svt my whole life but also get sinus tachycardia from dehydration. This feels more like a pounding and a gradual slow down. It is possible some of the episodes are not wpw but that doesn't mean that all are not. You have some sort of failure and though you mention your weight is an issue it is possible you have had periodic episodes of wpw that have contributed as well. I wish I could tell you with absolute certainty that you do have it but they really don't know for sure until they get in and trigger it. What I can say is that it is a safe procedure so you need not worry about dying. And if it turns out you do have an svt it may help your heart recover some from the weakened state it is in now. So the risks outweigh the rewards but having him explain his reasons may help ease your mind. And having him explain the safety of procedure could as well. Just ask whatever you need to ask that will put your mind at ease about doing it. You may be scared regardless. I was just terrified to do it but once it was said and done I found it to be a piece of cake. I can't promise that yours will be, mine was active and easy to provoke but in the grand scheme of things, after having had 2 abdominal surgeries for uterine fiborids I can with confidence say the ablation procedure was far less traumatic on my body. Each of us is different but I would suspect that your gall bladder surgery will wind up being worse than the ablation. And remember that you are doing this to preserve the health of your heart. So the risks outweigh the rewards. Please let us know how it goes with the doctor.
I forgot to tell you...the forty years is what I saw when I looked him up online..I guess it was his years as cardiologist. He didn't actually say to me he was doing them that long,. But I have a chance Monday to ask anything. Maybe I should ask to wear a 24 hour monitor like I read about. It must be very tricky to do ablation so if they stay in there six hours.
1 Comments
The questions in order of importance to you are
1. how many ablations is he doing each year and how many has he done in his career?
2. what is his success rate and major complication rate for the last few years?
3. is his lab equipped with 3D mapping system (Carto 3 or EnSite Velocity) and what ablation catheter does he use to maximise the chance for success with low complication risk?
4. what are the major complications and how does he handle them?
1. how many ablations is he doing each year and how many has he done in his career?
2. what is his success rate and major complication rate for the last few years?
3. is his lab equipped with 3D mapping system (Carto 3 or EnSite Velocity) and what ablation catheter does he use to maximise the chance for success with low complication risk?
4. what are the major complications and how does he handle them?
Thank you. I see what you're saying. Maybe I'm not explaining it right, but I don't think I recognize the exact beat of onset ..just feel and see the chest pounding...do the deep breathing,praying,etc..it subsides...then back again maybe 3-5 times,then normal. Another episode might happen in five minutes, or two hours or ten hours. If I'm asleep I don't notice. It doesn't seem to be associated with stress or excitement or even walking to the next room or to the car which is about the extent of my exercise.
I want to say they told me my ekg went to 200 but not sure.i can ask that. My mother had a successful pacemaker, and my dad was told he needed one but refused..guess my cowardice came from that side. Maybe I need that, or maybe they had Wpw??
My metoprolol says metoprolol succinate ER 24 hr 25 mg. I didn't time my beats until after I began it. Sometimes the beats are only 160 which feels super fast .my pulse now is 56. Sometimes it's hard to feel it because it's faint and feels thready ..that's how I can describe it..thin and not always regular..can jump or skip.
I'm getting a sleep evaluation March 28 and pretty sure I have apnea. I booked the appointment in January. My sister said that could cause the tiredness which is keeping me me from everything. I'm overweight. I need to be able to cook paleo type meals,not junk.
What should I ask when I see the dr to be sure this is truly what I have. I really appreciate your involvement with my questions. If I were your mother or sister, how would you feel about all this,tom. Your advice does mean a lot to me. I don't know anyone who's had this.
I can't thank you enough. I don't think I'll have to pay, but I'm not wild about unnecessary surgery either. I have an awful feeling that it won't solve my inability to function and/or I will need further procedure which could also be unsuccessful in restoring my vitality. It's been
P.S.
I had sepsis and pancreatitis with blocked common duct before getting my gall bladder removed four years ago. I don't know if that matters, but I've only gone downhill. ..slowly at first, then the last year just progressively useless.
I take armour thyroid 60mg and no one really cares about my thyroid. My mother had thyroid cancer..cured with radioisotope,and I have hair loss, tired and other signs of low thyroid,but my blood work came back normal for everything except vitamin d was 12! So I'm taking that. D3 5000 units by Pure Co. I stopped taking amlodipine 5 mg when I read it caused rapid heart beat about 6 days ago. My blood pressure was only borderline high when I started it along with benazapril which the cardiologist told me to discontinue and replaced it with the metoprolol.
I want to say they told me my ekg went to 200 but not sure.i can ask that. My mother had a successful pacemaker, and my dad was told he needed one but refused..guess my cowardice came from that side. Maybe I need that, or maybe they had Wpw??
My metoprolol says metoprolol succinate ER 24 hr 25 mg. I didn't time my beats until after I began it. Sometimes the beats are only 160 which feels super fast .my pulse now is 56. Sometimes it's hard to feel it because it's faint and feels thready ..that's how I can describe it..thin and not always regular..can jump or skip.
I'm getting a sleep evaluation March 28 and pretty sure I have apnea. I booked the appointment in January. My sister said that could cause the tiredness which is keeping me me from everything. I'm overweight. I need to be able to cook paleo type meals,not junk.
What should I ask when I see the dr to be sure this is truly what I have. I really appreciate your involvement with my questions. If I were your mother or sister, how would you feel about all this,tom. Your advice does mean a lot to me. I don't know anyone who's had this.
I can't thank you enough. I don't think I'll have to pay, but I'm not wild about unnecessary surgery either. I have an awful feeling that it won't solve my inability to function and/or I will need further procedure which could also be unsuccessful in restoring my vitality. It's been
P.S.
I had sepsis and pancreatitis with blocked common duct before getting my gall bladder removed four years ago. I don't know if that matters, but I've only gone downhill. ..slowly at first, then the last year just progressively useless.
I take armour thyroid 60mg and no one really cares about my thyroid. My mother had thyroid cancer..cured with radioisotope,and I have hair loss, tired and other signs of low thyroid,but my blood work came back normal for everything except vitamin d was 12! So I'm taking that. D3 5000 units by Pure Co. I stopped taking amlodipine 5 mg when I read it caused rapid heart beat about 6 days ago. My blood pressure was only borderline high when I started it along with benazapril which the cardiologist told me to discontinue and replaced it with the metoprolol.
1 Comments
25mg. of Metoprolol Succinate is very low, and usually has minimal effects on the average person. I've been on 75mg for 5 years, and had been as high as 200mg. Prior to my ablation. I was just asking because high doses can really slow you down and give you a heavy chest feeling is any exertion occurs.
I can offer some advice to you with regards to sleep apnea and you diet if you need any. I've used CPAP very successfully for 8 years. I no doubt saved from severe complications later in life, and got my wife back in bed with me as my snoring could only be described as ungodly. I'm now as quiet as a mouse when I sleep, and my awakenings have gone from 60 an hour to 3. Picture 60 disturbances in ypu sleep per hour. Between my lack of sleep and 200mg of metoprolol, I was indeed a zombie.
I also eat Paleo, and have done so since 2011 When my A1C crept up over 7.0. I now manage to keep it below 6.0 without meds by following a diet of eggs, meats, cheese, plenty of nuts, and selected vegetables. Keep us informed how you make out with everything. Also, check the journals of forum member "Jannie411" for a detailed description of the entire ablation process.
I can offer some advice to you with regards to sleep apnea and you diet if you need any. I've used CPAP very successfully for 8 years. I no doubt saved from severe complications later in life, and got my wife back in bed with me as my snoring could only be described as ungodly. I'm now as quiet as a mouse when I sleep, and my awakenings have gone from 60 an hour to 3. Picture 60 disturbances in ypu sleep per hour. Between my lack of sleep and 200mg of metoprolol, I was indeed a zombie.
I also eat Paleo, and have done so since 2011 When my A1C crept up over 7.0. I now manage to keep it below 6.0 without meds by following a diet of eggs, meats, cheese, plenty of nuts, and selected vegetables. Keep us informed how you make out with everything. Also, check the journals of forum member "Jannie411" for a detailed description of the entire ablation process.
Just so you're aware, the first cardiac ablation was performed in 1981, but didn't come a regular procedure until the 1990's. So at the most, your cardiologist or electrophysiologist may have 25 years with the procedure, and most likely less than that.
Just a couple of comments and questions.
How much Metoprolol are you taking daily?
As Michelle noted, you heart rate is very, very slow for WPW when compared to "normal" rates of 180-240 bpm during a episode of rapid heart rate. Wolff-parkinson-White Syndrome can be detected on an EKG, so it's possible to see the condition without actually experiencing an episode. People can go a lifetime with WPW without experiencing a rapid heartbeat episode.
As Michelle noted, the hallmark of WPW as well as other types of SVT is the sudden and abrupt onset and termination of an event. If you're not experiencing that, chances are that you are not having an event. But as mentioned above, you physician could still detect WPW. Keep in mind too that WPW is less common in females than males.
Something to consider is the cost of the procedure. If you're fortunate enough to have insurance that covers the cost with only a small outlay by you, the you can go ahead with the procedure knowing that if they find nothing, you won't be out a lot of money needlessly. The key to finding and eliminating it is to get it going in the lab. There's no "guessing" as to where the problem exists in your heart.
Michelle and I are two of a few regulars that have had the procedure. If you have questions, don't hesitate to ask.
Just a couple of comments and questions.
How much Metoprolol are you taking daily?
As Michelle noted, you heart rate is very, very slow for WPW when compared to "normal" rates of 180-240 bpm during a episode of rapid heart rate. Wolff-parkinson-White Syndrome can be detected on an EKG, so it's possible to see the condition without actually experiencing an episode. People can go a lifetime with WPW without experiencing a rapid heartbeat episode.
As Michelle noted, the hallmark of WPW as well as other types of SVT is the sudden and abrupt onset and termination of an event. If you're not experiencing that, chances are that you are not having an event. But as mentioned above, you physician could still detect WPW. Keep in mind too that WPW is less common in females than males.
Something to consider is the cost of the procedure. If you're fortunate enough to have insurance that covers the cost with only a small outlay by you, the you can go ahead with the procedure knowing that if they find nothing, you won't be out a lot of money needlessly. The key to finding and eliminating it is to get it going in the lab. There's no "guessing" as to where the problem exists in your heart.
Michelle and I are two of a few regulars that have had the procedure. If you have questions, don't hesitate to ask.
Hi Michele...I was so happy to see your reply. Thank you. No, mine doesn't seem to start like that..in one beat and stop. With me,I'm say watching tv, suddenly for no reason at all, I feel my heart pounding . You can see it. It's very fast to me. I can't remember what the cardiologist said the count was, but I've been counting myself now, and I'm on Metoprolol. So I can feel a difference in how long the episodes last. Also less frequent...but still occurring. So it starts pounding, I tell myself to relax, I take in a deep meditative breath,then out through the mouth. In my head I'm saying...slow down,this is not necessary..I may pray,quote a psalm to myself. I feel my wrist pulse and am relieved that it slows back to normal sometimes on the first deep breath,sometimes it may take two to five min. But it starts again maybe ten times in an hour..maybe less. When I called to ask about scheduling the ablation today, I told the nurse I was anxious about how quickly he diagnosed me with Wpw. Did he see the called delta wave mentioned in medical info I'd read. She just said she only knew that he would not have told me he knew without really knowing.. She was very comforting and called me back to say he wanted me to come in again to be sure I was satisfied knowing all I wanted to know. So I'm going back Monday. After that,it's just waiting however long it takes for insurance authorization. One would think they could be quick about it with heart related issues. I'm sure they've seen the bills from the physician to the cardiologist then electro cardiologist,so how unprepared can they be to get such a request. Do you think I should call them? I have Medicare and CareFirst. I really appreciate your reply and all the details about your own experience. I am most afraid of three things...one..dying during the procedure or becoming half dead.and two...that it won't work, and I'll need another ablation or pacemaker ,and three..that I will remain the bedridden person I am today,unable to stay awake,unable to shower,dress and attend a lunch or movie without resting and sleeping for two days after, barely able to walk to the bathroom and back, afraid to have gratifying sex and so tired I can barely be attentive, just so tired and drowsy, I can't have a normal life. I was an artist. I want to paint, to garden, to bathe my dogs, to clean my house, to cook a meal, to walk around anywhere. I have to say no to every invitation even to my own husband because I can't get up,get dressed and stay awake. I walk with a cane and my eyes look like I havent slept . Sorry about ranting,but I really really hope I will have more energy and get back to living. I'll let you know Michele. And thank you again for answering my comment. Xox
Thank you. I'm going to dr Lawrence waspe in Modesto.i decided to schedule the ablation,and his nurse was reassuring,then called me back to say he wants me to return so that he can help me understand things and answer my fears etc. At first,that made me wonder of there were even more things to worry about,but she said he just wanted me at ease. I am a fearful coward. The cardiologist who sent me to dr waspe seemed outstanding. I looked him up..a child prodigy type early graduation,honors etc. I dI so dear if I should head over to the city/s.f. But everyone I've told says it's straightforward. I feel like I can trust this guy, but I have a real love of life and hate that I have to worry about dying every day because I feel so lousy and like I should have another 20 years due me. I see other people my age flourishing. Then again, there's so many worse off than I am. I really appreciate your answering my note. Thank you so much,and I wish you the best,especially health.
40 years of experience is pretty hard to beat. Depending on whether you belong to Kaiser HMO or private network, both will provide you pretty good choices for pretty good chances for a cure via ablation at low complication risks. If you belong to a private network, Sutter Sacramento or SF are your best choice and Kaiser will send you to their Santa Clara EP lab. All 3 are good.
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One other reason you may be tired besides possible heart failure could be low bp which may be made worse from bp meds. The concerning thing is that you struggle to function with something as basic as walking across the room. that is concerning. I know when I let one of my svt episodes go too long I had temporary failure but I was young and my heart was able to recover. so though I understand your desire to seek a second opinion, it is a fairly safe procedure and considering you are known to have had episodes of racing heart your whole life odds are there may be something there to fix that could help protect your heart from becoming weakened any further. I think unfortunately for those of us who have had episodes all our lives it can be easy to just brush it off as normal for us and nothing to worry about. I know mine always stopped on their own so I never gave it much thought, but there comes a time when it is important to take a serious look at the health of the heart and an ablation may be warranted. Your heart is stressed out and appears to be weakened. No one can blame you for seeking a second opinion first but keep open minded about an ablation. They really are fairly safe but maybe seek a second opinion considering there may be some failure already. I am not sure how that would affect your risks. Definitely voice your concerns with your current ep and see what they say. For now get as much rest as you can. it sounds like your heart needs it. Take care. Keep us posted on how you are doing.