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?

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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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I have a Medtronic pacemaker for 7 years. Having sudden pain now for 2 days where it is attached on the left side. Ironically, saw the doctor and the Medtronic tech for a yearly check-up this Friday. All was A-OK. Friday night I started feeling a low grade pain in that area. Fell asleep. Next morning it started again and got worse if I moved around too quickly. I tried calling the doctor but could only get a Nurse in the late afternoon. She said: Go to urgent care, which I want to avoid. I'm hoping to get hold of the doctor Monday and get some direction about it. It seems to come and go. It's a pulsing type pain, I assume it goes with the heart rhythm. But I've never had any issues for the past 7 years so this is sudden and concerning. Doctor said I have approximately 31/2 years left on the battery. Anyone here has had a similar issue? Thank You

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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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WOW! Yes! Me too! This describes how mine feels. My surgery was October 8, 2020. Still hurts, and just recently the last few days the pain seems worse and there's a burn/sting sensation. OKAY, so I will call my dr tomorrow. I am "just now" new to this conversation, so maybe I commented on the wrong post. All I know is that I have a pacemaker that was installed October 2020. And this conversation seems to describe the pain I'm experiencing. Will do an upload on my medtronic device that's near my bed, and plan to call my Dr in the morning first thing. This scares me!

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Hi , Iam "Soldier 0461". I am new to this site> Here is my story: I am very fit having been an athlete all my life and a full career in the Army. My problem started when I had a blood pressure test and it was found that my Heart beat was only 29bpm yet! I felt good and still training every day with no symptoms of illness. It was arranged for me to have a Pace Maker fitted. The operation was to take 1hr 30 mins, indeed half way through the procedure I was rushed to the X-ray dept. for an X-ray. I was returned to the operating table and it took another 1hr 30 minutes to finish. . The surgeon later came to have a chat with me and advised me that during the operation when inserting a wire in my chest from the pace maker a vein had been punctured and the left ventricle of my heart scored.. He advised me that it was caused by a surgeon that he was training . He then gave me some paperwork and said if I wished to put in a formal complaint and to claim compensation to complete the forms. I said, I didn't want to claim any compensation as it was simply an accident and not done with any malicious intent. Summary> I feel fit and well, still training but less than I used to. I didn't realise the restrictions to ones daily life with a Pace Maker, Not allowed to lift anything heavy, not allowed to lift anything above ones head, not allowed do the crawl when swimming. No Contact sports, But I can still make love. [carefully] Update> 2 months later each time I yawn , sneeze, cough or take a deep breath I get a sharp pain in my chest as if pricked with a pin, lasts less than a second. I am burping quite a lot, I get pins and needles in my hands and feet and cramp in my legs, but other than that I feel good. My heart beat is a constant 60bpm but occasionally I have heart palpitations for about a minute. Question> Am I glad I had a Pace Maker fitted, Honestly> I am not sure as my life has been impacted so much with the restrictions of a pace maker, my life has changed dramatically. Oh yes and on top of this I have leukaemia.

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@6sld6

WOW! Yes! Me too! This describes how mine feels. My surgery was October 8, 2020. Still hurts, and just recently the last few days the pain seems worse and there's a burn/sting sensation. OKAY, so I will call my dr tomorrow. I am "just now" new to this conversation, so maybe I commented on the wrong post. All I know is that I have a pacemaker that was installed October 2020. And this conversation seems to describe the pain I'm experiencing. Will do an upload on my medtronic device that's near my bed, and plan to call my Dr in the morning first thing. This scares me!

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Hi Deb, sorry to hear you are suffering the same side affects as me. Last night the feeling of being pricked by pins was the worse yet, not to mention my legs from the knee down to me feet felt as if they were on fire so I got up and ran around the garden a few times and felt better. When I got up this morning and gave a long yawn I got the strange pain in my chest again. The pain etc doesn't really worry so much as the restrictions on my daily life. I miss wrestling with my dogs on the lawn and going swimming, I know we are allowed to do the breast stroke but I need to do the crawl to feel myself powering along the pool. Oh yes and my tectonic device doesn't seem to work, I have been told they will call me in 4 weeks time. Just had a thought: When in the Army out training with my soldiers one of my Sgts stopped running and sat down gasping,, "Sgt are you in pain " I barked at him " Yes sir he replied" I said " If You feel pain that's good, Its shows your alive, get moving" good days,
Keep safe Deb and smile.

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@dennis0461

Hi Deb, sorry to hear you are suffering the same side affects as me. Last night the feeling of being pricked by pins was the worse yet, not to mention my legs from the knee down to me feet felt as if they were on fire so I got up and ran around the garden a few times and felt better. When I got up this morning and gave a long yawn I got the strange pain in my chest again. The pain etc doesn't really worry so much as the restrictions on my daily life. I miss wrestling with my dogs on the lawn and going swimming, I know we are allowed to do the breast stroke but I need to do the crawl to feel myself powering along the pool. Oh yes and my tectonic device doesn't seem to work, I have been told they will call me in 4 weeks time. Just had a thought: When in the Army out training with my soldiers one of my Sgts stopped running and sat down gasping,, "Sgt are you in pain " I barked at him " Yes sir he replied" I said " If You feel pain that's good, Its shows your alive, get moving" good days,
Keep safe Deb and smile.

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Well, I do appreciate the response.....however, I am not Deb. Make sure you get a message to the proper person. My name is "Shelley". Even tho I've had pain at my pacemaker site since the day I left the hospital October,2020... it has recently become worse. Feels as if there's a "pushing/pressure" followed by a burn sensation with the sharp prickly needles. My pulse got down to 37 in the hospital before my procedure and currently hovers around the 82 mark. I'd been feeling kind of "off", dizzy like and light headed and had absolutely NO color in my face, so I went to see my PCP. She sent me to ER, immediately I was transported to a hospital and had the pacemaker procedure the next day. Grateful to be alive today! Have an upcoming appt with cardiology to see what's going on. It is nice to be in touch with others, so Thank You for responding.

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Hi Shelly, sorry about the name error, maybe its because I type like a madman and my daughter thinks it sounds like a sledge hammer. About pulse rates: prior to being recommended for a pace maker my pulse was a constant 29BPM but I suffered no side affects and still ran and trained daily. The consultant on reading my Army med records noted that even then my pulse was a constant 40 BPM so I feel as a none-medical person that recommended pulse rates are a ball park guideline. My current pulse rate with the pace maker is constant 60BPM whether or not I have been training and my blood pressure is a constant= Systolic 100 and Diastolic 80 i/e 100/80. Prior to the pace maker being fitted I had no symptoms and felt healthy, now> I suffer variolous symptoms, cramp, strange feeling of being pricked by pins and my lower legs at night feel as if on fire and I cannot be involved in contact sports. But this is the least of my worries as I have now been diagnosed with blood cancer, but that's life. Keep safe. PS: Iam pleased I found this site, it is really full of sound advice

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