Pain around pacemaker site

Posted by dorothynoz45 @dorothynoz45, Jun 22, 2019

I am getting very frustrated with this situation. I have had my pacemaker for over 2 years and I still have the same cramping ache at the site that I experienced after the implant. No one takes me seriously. I have been trying to rattle the cardiology office cage for a week and 1/2 now. Several weeks ago it got worse; woke me up at night and in the morning it hurt so bad that twice I couldn’t stand straight. It seems to harder to stand up when I get up and start moving. I can’t get past the phone nurse. She left a voice mail for me ‘ that it couldn’t possibly be the device because I’ve had it so long. That it must be something else.’ Dr. told me they could re position it but didn’t like to for fear of infection. I am posting because after this long of time, although I’ve been told nothing can be done about it, I don’t want this in my life anymore. Has this happened to anyone else?

@lov

Need help overcoming emotions dealing with recent AFib diagnosis 10/15/19 & placement on blood thinner & rate regulator and recent pacemaker with 2 leads implanted resulting in baseline of aching from it (12/23/19). On 4 meds for handling heart issues. Grieving over discomfort and fear of not being able to recognize signs of going into AFib. I know this sounds way out, but are there service dogs who can sniff out impending AFib like they sniff out diabetic crisis/low blood sugar, seizures, and breast cancer? Are there free emotional support groups for patients to work through their feelings about their declining health regarding heart issues?

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Sorry to hear! How bad was your afib when diagnosed? Was it all day, everyday? Heart rate? Sounds like they put u on a lot of things quickly and all at the same time. They tried to put me on a blood thinner and I refused! Put me on Metropolol for high blood pressure and afib meds. Stopped taking everything slowly. Blood thinner took 3 days with 2 many side effects. Dont get yourself all anxious since it will make your afib much h worse. Try breathing exercises, meditation. Yoga and walls in the fresh air help a lot

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@lov

Need help overcoming emotions dealing with recent AFib diagnosis 10/15/19 & placement on blood thinner & rate regulator and recent pacemaker with 2 leads implanted resulting in baseline of aching from it (12/23/19). On 4 meds for handling heart issues. Grieving over discomfort and fear of not being able to recognize signs of going into AFib. I know this sounds way out, but are there service dogs who can sniff out impending AFib like they sniff out diabetic crisis/low blood sugar, seizures, and breast cancer? Are there free emotional support groups for patients to work through their feelings about their declining health regarding heart issues?

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Hello! Are your meds not controlling your Afib adequately…so you don't have to worry? I steered clear of the following to stop any Afib…even little blips. Coffee, tea, alcohol, cigarette smoke, chocolate, medications that could stimulate the heart like decongestants, dental drugs and even the drops that widen the eye pupils! I had it last week and my heart beat fast and heavily for hours…thankfully not flipping into Afib.

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@lov

Need help overcoming emotions dealing with recent AFib diagnosis 10/15/19 & placement on blood thinner & rate regulator and recent pacemaker with 2 leads implanted resulting in baseline of aching from it (12/23/19). On 4 meds for handling heart issues. Grieving over discomfort and fear of not being able to recognize signs of going into AFib. I know this sounds way out, but are there service dogs who can sniff out impending AFib like they sniff out diabetic crisis/low blood sugar, seizures, and breast cancer? Are there free emotional support groups for patients to work through their feelings about their declining health regarding heart issues?

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@lov, it is absolutely natural that you are worried––pacemakers can detect asymptomatic AF but are not routinely monitored for this purpose.
However, since you are taking a blood thinner, you you seem to be on the right track to prevent the risk of stroke.
Here’s a recently published study that investigated whether pacemaker checks could be used to identify patients with asymptomatic AF, who could then be given anticoagulation for stroke prevention. https://www.sciencedaily.com/releases/2015/10/151017152236.htm

I’d like to connect you with others who are living with a pacemaker like @dragonass @lmclaugh @lynjolo @exboater @danab @rog @elwood @maryrohrer1 @texas14. You can also read their stories in these discussions:
– Pacemaker recipients https://connect.mayoclinic.org/discussion/pacemaker-recipients
– KardiaMobile https://connect.mayoclinic.org/discussion/kardiamobile/

There are service animals–Cardiac Alert/Response dogs–that are able to detect various heart-related symptoms. You could ask your local ASPCA or Humane Society chapter for more information.

Recovery after pacemaker surgery takes time, @lov and everyone is different. Are you noticing any improvements at all?

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@afrobin

Hello! Are your meds not controlling your Afib adequately…so you don't have to worry? I steered clear of the following to stop any Afib…even little blips. Coffee, tea, alcohol, cigarette smoke, chocolate, medications that could stimulate the heart like decongestants, dental drugs and even the drops that widen the eye pupils! I had it last week and my heart beat fast and heavily for hours…thankfully not flipping into Afib.

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I need to go to dentist and retina specialist: what are the names of drugs I need to avoid? Thank you, lov

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@lov

Need help overcoming emotions dealing with recent AFib diagnosis 10/15/19 & placement on blood thinner & rate regulator and recent pacemaker with 2 leads implanted resulting in baseline of aching from it (12/23/19). On 4 meds for handling heart issues. Grieving over discomfort and fear of not being able to recognize signs of going into AFib. I know this sounds way out, but are there service dogs who can sniff out impending AFib like they sniff out diabetic crisis/low blood sugar, seizures, and breast cancer? Are there free emotional support groups for patients to work through their feelings about their declining health regarding heart issues?

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What makes you anti blood thinners.?? They are very useful to guard against stroke

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@lov

Need help overcoming emotions dealing with recent AFib diagnosis 10/15/19 & placement on blood thinner & rate regulator and recent pacemaker with 2 leads implanted resulting in baseline of aching from it (12/23/19). On 4 meds for handling heart issues. Grieving over discomfort and fear of not being able to recognize signs of going into AFib. I know this sounds way out, but are there service dogs who can sniff out impending AFib like they sniff out diabetic crisis/low blood sugar, seizures, and breast cancer? Are there free emotional support groups for patients to work through their feelings about their declining health regarding heart issues?

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You should not have pain with a pace maker. There may be a problem with how it is anchored. Check with the surgeon who put it in. You may need a revision. I have no pain during about 8 years of a demand 60 and 1 visit a year to the cardiologist for an equipment check and review of battery life. I am good for another 10 years with the battery. I don't know I have one. Love your heart. keep the arteries open with diet and strong with exercise. It will love you for it. If it needs something, give it to it. The heart needs to be happy.

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Need help overcoming emotions dealing with recent AFib diagnosis 10/15/19 & placement on blood thinner & rate regulator and recent pacemaker with 2 leads implanted resulting in baseline of aching from it (12/23/19). On 4 meds for handling heart issues. Grieving over discomfort and fear of not being able to recognize signs of going into AFib. I know this sounds way out, but are there service dogs who can sniff out impending AFib like they sniff out diabetic crisis/low blood sugar, seizures, and breast cancer? Are there free emotional support groups for patients to work through their feelings about their declining health regarding heart issues?

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@cmensinger

I had a Medtronix pacemaker implanted in February 2019, so I am still getting used to it. Wondering if anyone has had sharp pain, stabbing pain at times, around the pacemaker site. It is not on the incision, rather it is "around" the site, especially near the shoulder and pec muscles. Feels like someone is stabbing me with a knife at times, and seems to generate in the area where I can feel where the lead attached to the pacemaker unit. My battery life has dropped significantly in my 4 months, and is now down to 4.5 years for replacement.

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Yes!!!! Had Medtronic pace and Defibrillator installed 10/20. I have stings and horrible burning. Have a large keloid forming. Told Doc. Waiting for appt with cardiac electro physiologist. Not that I am happy you have this horrid pain, but glad I found you. I called Medtronic, they would not talk except to say they had calls about the stings/burn and check with doctor. Had 3 month check. Technician said device working great…had knowledge that device feels like it stings/ burns worse on slight body frames…waiting…

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@deb1020

Yes!!!! Had Medtronic pace and Defibrillator installed 10/20. I have stings and horrible burning. Have a large keloid forming. Told Doc. Waiting for appt with cardiac electro physiologist. Not that I am happy you have this horrid pain, but glad I found you. I called Medtronic, they would not talk except to say they had calls about the stings/burn and check with doctor. Had 3 month check. Technician said device working great…had knowledge that device feels like it stings/ burns worse on slight body frames…waiting…

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I am sad to say, that I have a medtronics azure MRI compliant pacemaker with a pacemaker monitor on my night stand that will do automatic uploads to the pacer department at the doctors (cardio) office….I have had nothing but trouble trying to communicate with medtronics about this. and to add insult to injury there is a FDA warning on my pacemaker losing all its battery power in 24 hrs. medtronics could care less about it, they will never talk to a patient only with the cardio docs…..I have never had any pain but mine does move around and that is not normal. just for your future information, there is case law that says any and all information within your body (as in your pacemaker) belongs to you and you alone….hope you never need to use the law but it will help if you do. hope all this works out for you and you feel better……

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@starfirey2k

I am sad to say, that I have a medtronics azure MRI compliant pacemaker with a pacemaker monitor on my night stand that will do automatic uploads to the pacer department at the doctors (cardio) office….I have had nothing but trouble trying to communicate with medtronics about this. and to add insult to injury there is a FDA warning on my pacemaker losing all its battery power in 24 hrs. medtronics could care less about it, they will never talk to a patient only with the cardio docs…..I have never had any pain but mine does move around and that is not normal. just for your future information, there is case law that says any and all information within your body (as in your pacemaker) belongs to you and you alone….hope you never need to use the law but it will help if you do. hope all this works out for you and you feel better……

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I also have Medtronic Azure and switched to monitoring my device with iPhone app. It goes w me everywhere, though the PM is programmed to record all events even if phone wasn’t within 3 feet. In other words, it catches up. As for the FDA warning, there were 3 patients 3 yrs ago that the battery was depleting..2 were caught immediately during implanting. There have been no other battery events.
You should be able to talk w device staff where your PM is being monitored ..don’t rely on office nurse. I will leave it with not all electrophysiology doctor offices are equal. I switched back to having Mayo’s monitor mine( had my PM installed at Mayo’s), local office was woefully incompetent.

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@deb1020

Yes!!!! Had Medtronic pace and Defibrillator installed 10/20. I have stings and horrible burning. Have a large keloid forming. Told Doc. Waiting for appt with cardiac electro physiologist. Not that I am happy you have this horrid pain, but glad I found you. I called Medtronic, they would not talk except to say they had calls about the stings/burn and check with doctor. Had 3 month check. Technician said device working great…had knowledge that device feels like it stings/ burns worse on slight body frames…waiting…

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I had my PM implanted 2 /12 yrs ago. I still have discomfort, but my E.P. cardiologist said it could have been placed deeper in muscle, but more painful. I can feel mine all the time…lump is obvious just under the skin. Yes, it is a bummer, but I feel so much better not having the heart pauses and no more lightheaded sensations. The discomfort has become less noticeable or I am just used to it. Everyone who had a PM should be getting readout of functionality, battery life, and any events in their portal every 91 days. It is your info, so demand it. I switched back to Mayo’s monitoring mine( they implanted it), and they automatically post my data. I tried local E.P. office for awhile..woefully incompetent and had to argue w them to get read outs. LOVE MAYO CLINIC !

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@texas14

I also have Medtronic Azure and switched to monitoring my device with iPhone app. It goes w me everywhere, though the PM is programmed to record all events even if phone wasn’t within 3 feet. In other words, it catches up. As for the FDA warning, there were 3 patients 3 yrs ago that the battery was depleting..2 were caught immediately during implanting. There have been no other battery events.
You should be able to talk w device staff where your PM is being monitored ..don’t rely on office nurse. I will leave it with not all electrophysiology doctor offices are equal. I switched back to having Mayo’s monitor mine( had my PM installed at Mayo’s), local office was woefully incompetent.

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The point was that medtronics never even contacted my EP office or the cardio doc….you mentioned that there were 3 known events, 1 was not so lucky…..and at the time medtronics already had 135k units implanted, I find it extremely difficult to believe that only 3 of them had a problem. they actually had one of their techs lie to me on the phone, saying don't worry about it was a software update and it has been fixed…..I contacted the FDA the next day and they confirmed there was never any fix or update to the device to clear the warnings. it is a hardware problem, not a software problem. medtronics is not a patient friendly company.

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