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?

Oh dear…that sounds painful and frustrating, Dorothy. If I were you, I would to Emergency. They see people with heart issues immediately. Hopefully they call a cardiologist and that you are not just treated by a resident. Maybe go early in the morning on a weekday.

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Dorothy, I agree with Robin that this is something that should not be ignored. Whether the cause is the pacemaker or not, cramping in the chest area requires attention.

I'm bringing fellow members @cmensinger @yoanne @exboater @eileena and @lmclaugh into this discussion. They all have experiences with pacemakers and may have some thoughts to add. You may also be interested in this discussion:

– Pacemaker recipients. https://connect.mayoclinic.org/discussion/pacemaker-recipients/

Dorothy, have you considered getting a second opinion from another cardiologist? If the cramping continues, I too recommend going to the ER.

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Just this week I have decided to pursue a 2nd opinion. I have an app't with my PC and I want a 2nd opinion.

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@colleenyoung

Dorothy, I agree with Robin that this is something that should not be ignored. Whether the cause is the pacemaker or not, cramping in the chest area requires attention.

I'm bringing fellow members @cmensinger @yoanne @exboater @eileena and @lmclaugh into this discussion. They all have experiences with pacemakers and may have some thoughts to add. You may also be interested in this discussion:

– Pacemaker recipients. https://connect.mayoclinic.org/discussion/pacemaker-recipients/

Dorothy, have you considered getting a second opinion from another cardiologist? If the cramping continues, I too recommend going to the ER.

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hello dorothy,
I definitely agree with the answers, you got.. I got my two chamber pacemaker 17 months ago. I had a check after 11 months. I was told everything o.k. At that moment they did not an echocardiography, otherwise they should have noticed that I was NOT o.k. I was developing a heart failure. I knew that I had a lot of A-Fib's (nothing to worry about, I was reassured).40 percent of the recipients have A-Fibs.)
These A-Fib's induced a ventricular arrhythmia. , leading to the heart failure. Like you it was very difficult to get an appointment. The nurse only found a date in MAY!!! So I had to wait 4 months. My family doctor got an earlier date. I had to wait ONLY 2 weeks. Honestly said, I was an emergency. I learned that a pacemaker can also cause problems or complications, so do not hesitate !!!
I did not have your discomfort around the site of implantation. In this context maybe an interesting tip (not for you). I am left handed, I was sedated before the implantation . The cardiologist did not discuss or explain, what he intended to do. otherwise I would have asked him to implant the device at the right site. a couple of weeks ago I had an unpleasent experience, I washed my curtains and put them back on the rails( correct american?), of course with my left hand. Afterwards I had a long period of irregular heart beats,( one hour.).
I hope you will get an answer soon.
yoanne.

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@yoanne

hello dorothy,
I definitely agree with the answers, you got.. I got my two chamber pacemaker 17 months ago. I had a check after 11 months. I was told everything o.k. At that moment they did not an echocardiography, otherwise they should have noticed that I was NOT o.k. I was developing a heart failure. I knew that I had a lot of A-Fib's (nothing to worry about, I was reassured).40 percent of the recipients have A-Fibs.)
These A-Fib's induced a ventricular arrhythmia. , leading to the heart failure. Like you it was very difficult to get an appointment. The nurse only found a date in MAY!!! So I had to wait 4 months. My family doctor got an earlier date. I had to wait ONLY 2 weeks. Honestly said, I was an emergency. I learned that a pacemaker can also cause problems or complications, so do not hesitate !!!
I did not have your discomfort around the site of implantation. In this context maybe an interesting tip (not for you). I am left handed, I was sedated before the implantation . The cardiologist did not discuss or explain, what he intended to do. otherwise I would have asked him to implant the device at the right site. a couple of weeks ago I had an unpleasent experience, I washed my curtains and put them back on the rails( correct american?), of course with my left hand. Afterwards I had a long period of irregular heart beats,( one hour.).
I hope you will get an answer soon.
yoanne.

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@yoanne Thank you for sharing your experiences with a pacemaker. You have proven how important it is for patients to advocate for themselves and seek another opinion and/or to go to an ER if needed.

Liked by AFRobin, gardenjoy

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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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Read your post last night and that you mentioned your battery going low, not sure what model you have but you should read the link below and check yours.
https://www.fda.gov/medical-devices/safety-communications/fda-alerts-providers-and-patients-check-premature-battery-depletion-certain-medtronic-pacemakers-fda

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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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Thanks for link and information! A friend sent this to me in May, and yes I do have one of the listed model numbers affected. My EP Cardiologist does not feel that has contributed, rather it is taking more voltage to contract my heart. However, I am going to Mayo in early Aug to get second opinion.

Liked by texas14

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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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I also have a medtronics PM, that is on the list….the last time I was at the cardio docs office, not a soul there knew anything about this fda warning until I handed to them….I actually had to force them to set up mine so it reports the battery use every 30 days….If I were to see a drop on battery life I think I would have to insist on changing this out. at their expense of course…good luck hope all works out for you…..

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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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I had Medtronic implanted Sept.2018 at MayoClinic. I also have had sharp pains where you do..even into my shoulder. I still have achy feeling right over PM but sharper pains have diminished in past couple months. I always feel it.. it never lets me forget its there. My local EP even said she can’t imagine having a PM in her chest..wow…she realized immediately what she had just said to me!
As to being notified about MEDTRONIC warning…( mine is on list) my Mayo EP nor local EP notified me. I read it on a tweet in May from an EP at the HRS conference. My wireless reading shows an appropriate loss of battery so far. I am really nervous about a planned European trip later this year and won’t be taking my bedside wireless monitor. I have been reassured by Medtronic rep that when I get back home, it will download automatically precious days away from it. Easy for them to say !

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@dorothynoz45

Just this week I have decided to pursue a 2nd opinion. I have an app't with my PC and I want a 2nd opinion.

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Hi @dorothynoz45,

How are you? Did you get any more insights after your appointment?

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Kanaaz, I do apologize that I have waited so long to respond to your kind inquiry about my pm pain. Progress is slow, isn't it? An x-ray shows that I have AC joint arthritis. I have waited 3 weeks tomorrow to hear from a dr who is going to give me some kind of nerve ending tests. Next week I see an orthopedic dr The pain hasn't bothered me recently although I could hardly sit in church about 2 weeks ago because of it. It is definitely related to activity although the pain seems to be directly over my pacemaker site. I just can't figure and why did the pain start at the exact same time I received my pacemaker?

Thank you again for asking. It takes time and I'm going to guess that most of us are short on patience. Oops! I sure am.

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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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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?

Liked by lucky1038

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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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