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Pacemaker nightmare
Hello. I have a question about my pacemaker and my heart. I have a permanent pacemaker w/unipolar lead in VDD mode. I was given this because I have an ablation induced complete heart block.
I have had this pacer for 4 years now. Since I got it, I have had trouble with exceeding it's upper limits, oversensing of my chest muscle, and trouble with anti-theft devices. With the devices I feel like my heart is literally stopping.
I recently did an event monitor which showed my pacer inhibiting its pacing function around the devices. I also know that when the pacer is checked, it is discovered that I do not have an "escape" underneath it. It was also discovered that I have underlying problems with my atria as well. And of course I only have one lead--sensing top only, sensing and pacing bottom.
Thanks to the anti-theft devices it is not unusual for me to nearly collapse in every store I go into that has them. And sadly I have been only getting limited attention to this matter.
I tried to document this problem before but I was ignored. Earlier this year I went through a device that triggered my pacemaker to fire during a "refractory" period of one of my heartbeats. This was seen on a holter monitor, but was never documented in the actual report.
I have to honestly say that I fear for my life, not just the pacemaker malfunction itself, but the injuries I could sustain if I fall.
Do you think this would warrant further attention? Thank you.
I have had this pacer for 4 years now. Since I got it, I have had trouble with exceeding it's upper limits, oversensing of my chest muscle, and trouble with anti-theft devices. With the devices I feel like my heart is literally stopping.
I recently did an event monitor which showed my pacer inhibiting its pacing function around the devices. I also know that when the pacer is checked, it is discovered that I do not have an "escape" underneath it. It was also discovered that I have underlying problems with my atria as well. And of course I only have one lead--sensing top only, sensing and pacing bottom.
Thanks to the anti-theft devices it is not unusual for me to nearly collapse in every store I go into that has them. And sadly I have been only getting limited attention to this matter.
I tried to document this problem before but I was ignored. Earlier this year I went through a device that triggered my pacemaker to fire during a "refractory" period of one of my heartbeats. This was seen on a holter monitor, but was never documented in the actual report.
I have to honestly say that I fear for my life, not just the pacemaker malfunction itself, but the injuries I could sustain if I fall.
Do you think this would warrant further attention? Thank you.
Thanks to all for your comments.
Hello and thank you to all who responded.
I have been to numerous docs--many of them feel my situation is "too complicated" and pass me on to someone else. I have been to several EP docs, they are included in this category.
What makes my situation all the more complicated is my other arrhythmias. Altogether, these "things" tend to elude detection.
I have been told I have unresolved atrial arrhythmias that require medicinal treatment. I also have rather aggressive pvc explosions, predominately wrapped around my pacer's antics. Often when my pacer becomes altered I start throwing them, and they often continue with a vengeance despite my pacer returning to normal. I get very symptomatic. (and given the fact that I have begun fusing like crazy with my pvcs too and their potential for firing during a refractory period...)
I was once prescribed flecainide for control of my pvcs, but the atrial problems themselves weren't even being dealt with. Not only that, I was given the prescription without any monitoring whatsoever--for my pacer or my heart for proarrhythmia.
In sum, I have sought many opinions--they say that my situation is perfectly fine and that I cannot do any better than this pacer. I feel very different about it all. Many of these docs never really looked very far into my situation because they simply "didn't know" what to do. (I also blame managed care as I cannot describe my problem in a 15 minute visit).
I also have written to the pacer company with my complaints and the most they would do was give names of some docs in my area that deal with my pacer. And there wasn't a whole lot--maybe three--tops.
I have covered many places in my area (BTW I am in far NE Illinois). I am currently working with another EP cardiologist, in Chicago, but he himself has already seemed to "hit a wall" when it comes to my situation. I want to be optimistic, but everytime I see these guys I basically get the impression that I cannot be helped. Hopefully this time I might succeed.
Thank you for all your thoughts.
I have been to numerous docs--many of them feel my situation is "too complicated" and pass me on to someone else. I have been to several EP docs, they are included in this category.
What makes my situation all the more complicated is my other arrhythmias. Altogether, these "things" tend to elude detection.
I have been told I have unresolved atrial arrhythmias that require medicinal treatment. I also have rather aggressive pvc explosions, predominately wrapped around my pacer's antics. Often when my pacer becomes altered I start throwing them, and they often continue with a vengeance despite my pacer returning to normal. I get very symptomatic. (and given the fact that I have begun fusing like crazy with my pvcs too and their potential for firing during a refractory period...)
I was once prescribed flecainide for control of my pvcs, but the atrial problems themselves weren't even being dealt with. Not only that, I was given the prescription without any monitoring whatsoever--for my pacer or my heart for proarrhythmia.
In sum, I have sought many opinions--they say that my situation is perfectly fine and that I cannot do any better than this pacer. I feel very different about it all. Many of these docs never really looked very far into my situation because they simply "didn't know" what to do. (I also blame managed care as I cannot describe my problem in a 15 minute visit).
I also have written to the pacer company with my complaints and the most they would do was give names of some docs in my area that deal with my pacer. And there wasn't a whole lot--maybe three--tops.
I have covered many places in my area (BTW I am in far NE Illinois). I am currently working with another EP cardiologist, in Chicago, but he himself has already seemed to "hit a wall" when it comes to my situation. I want to be optimistic, but everytime I see these guys I basically get the impression that I cannot be helped. Hopefully this time I might succeed.
Thank you for all your thoughts.
WOW ! I thought I had problems.......
First of all......GET TO A REALLY GOOD EP DOCTOR ! NOT a regular cardiologist....sorry docs. I just have found, with the people I chat with, and deal with, and having had worked in the field, that EP docs are really the best for pacer problems. I had 2 pacers before this one, and they were all endocardial ones dual chamber. But, I now have a epicardial, unipolar pacing system with 4 leads. I was told that this was more sensitive then the leads that are in the heart. The docs were right. But,I have never heard of nor read about a anti-theft device causing such a bad reaction. I still get a one or two beat skip if I do not go through them fast enough. But then it goes back to being ok. My pacer still reads mypotentials and also I get the popping in my shoulder from muscle stimulation too.
I would get to an EP doc, and yell and scream until they listen. It is really sad that we pacer patients have to do this. But the companies that make these devices tell the docs that the pacemakers can do no wrong ! That the pacer is doing the right thing. Doctors who are busy, almost always takes the reps word on it, do not have the time always to study up on all that a pacer can cause, and how and what ever. It is so different in each patient. There are millions of settings that cause problems and also help patients. NO ONE has that much time to know everything. But you need to get to a doctor that will at least listen.
I had so many problems with my pacing system's that a very good doctor who did care said that.....pacemakers have a bias opinion, that they "think" they are doing the right thing. But many times if not always, the things that can go wrong can only be picked up by a holter. The pacemaker can't really tell if there is undersensing and things like that. It will NOT show up on interrogation. You have to remember, they only "see" what is happening in clinic not at home. Some of the new ones can show a little more, but cannot really put the cause, with the symptoms, with out a holter.
The doctors here on this site DO LISTEN, and can maybe offer you some insight on who to see in your area. I know they have some really fantastic EP docs at the Cleveland Clinic. A few of them are known world wide for their work. I know some great EP docs too, so if you let me know the town you are in, maybe I can help get you to a good one. But remember, our pacemakers are a necessary evil, they are not perfect devices. But with the right EP doctor you can live a normal, and better life then before you had the pacemaker. I know it may not seem like it now, but having a pacemaker is a wonderful thing. I beleive that you will in time, with the right doctor and pacemaker, that you will feel much better! Take care.
First of all......GET TO A REALLY GOOD EP DOCTOR ! NOT a regular cardiologist....sorry docs. I just have found, with the people I chat with, and deal with, and having had worked in the field, that EP docs are really the best for pacer problems. I had 2 pacers before this one, and they were all endocardial ones dual chamber. But, I now have a epicardial, unipolar pacing system with 4 leads. I was told that this was more sensitive then the leads that are in the heart. The docs were right. But,I have never heard of nor read about a anti-theft device causing such a bad reaction. I still get a one or two beat skip if I do not go through them fast enough. But then it goes back to being ok. My pacer still reads mypotentials and also I get the popping in my shoulder from muscle stimulation too.
I would get to an EP doc, and yell and scream until they listen. It is really sad that we pacer patients have to do this. But the companies that make these devices tell the docs that the pacemakers can do no wrong ! That the pacer is doing the right thing. Doctors who are busy, almost always takes the reps word on it, do not have the time always to study up on all that a pacer can cause, and how and what ever. It is so different in each patient. There are millions of settings that cause problems and also help patients. NO ONE has that much time to know everything. But you need to get to a doctor that will at least listen.
I had so many problems with my pacing system's that a very good doctor who did care said that.....pacemakers have a bias opinion, that they "think" they are doing the right thing. But many times if not always, the things that can go wrong can only be picked up by a holter. The pacemaker can't really tell if there is undersensing and things like that. It will NOT show up on interrogation. You have to remember, they only "see" what is happening in clinic not at home. Some of the new ones can show a little more, but cannot really put the cause, with the symptoms, with out a holter.
The doctors here on this site DO LISTEN, and can maybe offer you some insight on who to see in your area. I know they have some really fantastic EP docs at the Cleveland Clinic. A few of them are known world wide for their work. I know some great EP docs too, so if you let me know the town you are in, maybe I can help get you to a good one. But remember, our pacemakers are a necessary evil, they are not perfect devices. But with the right EP doctor you can live a normal, and better life then before you had the pacemaker. I know it may not seem like it now, but having a pacemaker is a wonderful thing. I beleive that you will in time, with the right doctor and pacemaker, that you will feel much better! Take care.
I have a dual chamber pacemaker. I'm on my third one since 89'. I've had two pacemakers to just up and quit on me. One for a mechanical failure and the other the battery went dead before it was replaced. Contact the manufuacturer and see what they can suggest. Then, consult another doctor for a second opinion. Preferably someone who you've never been to before.
Hi DD,
The doctor that Doc JMF mentioned, Dr. Bruce Wilkoff is one of the best in the U.S. The Cleveland Clinic is not that far away. I used to live in Winnetka, Ill. I know there are some good docs at Northwestern hospital. I know a good doctor here in Milwaukee. He studied with one of the best pacemaker doctors.
He is probably the best in Milwaukee too. I am wondering if any doctors mentioned "Sick Sinus Syndrome" ? I have this, and I was told that it is the "garbage can" of heart rhythm's. I have tachy-brady rates, a-fib at times, IST, SVT and PVC's and APC's. I have choosen NOT to have an ablation done. I am still after almost 3 years, having trouble keeping a pacemaker in me. So, when I can get to a point where my body will keep a pacemaker in it, and all is well...then I will see about an ablation for the fast rates. I know how it feels to have doctors, that when they do not know what to do..they just pass you on to someone else. It does not feel good. I now have a fantastic doc, and she has told me that she will never give up trying to help me ! I can never thank my old doctor enough, for getting me to my current doctor. If you want to mail me direct, go to the "support" area up above and then search for "pacemaker". You will see my name, Deb and Wisconsin, click on it and it will send you to my mail. Take care.
The doctor that Doc JMF mentioned, Dr. Bruce Wilkoff is one of the best in the U.S. The Cleveland Clinic is not that far away. I used to live in Winnetka, Ill. I know there are some good docs at Northwestern hospital. I know a good doctor here in Milwaukee. He studied with one of the best pacemaker doctors.
He is probably the best in Milwaukee too. I am wondering if any doctors mentioned "Sick Sinus Syndrome" ? I have this, and I was told that it is the "garbage can" of heart rhythm's. I have tachy-brady rates, a-fib at times, IST, SVT and PVC's and APC's. I have choosen NOT to have an ablation done. I am still after almost 3 years, having trouble keeping a pacemaker in me. So, when I can get to a point where my body will keep a pacemaker in it, and all is well...then I will see about an ablation for the fast rates. I know how it feels to have doctors, that when they do not know what to do..they just pass you on to someone else. It does not feel good. I now have a fantastic doc, and she has told me that she will never give up trying to help me ! I can never thank my old doctor enough, for getting me to my current doctor. If you want to mail me direct, go to the "support" area up above and then search for "pacemaker". You will see my name, Deb and Wisconsin, click on it and it will send you to my mail. Take care.
This most certainly needs attention. If you require a second opinion, I can strongly recomment Dr. Bruce Wilkoff at CCF. He may be able to offer some suggestions for this.
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