I wish I could pull it out!

I had been given to believe that I would feel absolutely normal within days of the Pacemaker insertion (end December 07).
Although it has diminished a lot over the last week, from the beginning I have had permanent pain just under and very slightly to the left of the centre of my breastbone, that is sharpish, but also like a "dry burn" . My upper chest, neck, lower jaw and teeth always feel tight or pressured and "engulfed", something like a sore throat, my left shoulder and arm ache, and my left breast feels "sore".
I often can't lie on my left side, sit in a slumped position, fold my arms, or lean my arm over my left side because of the pressure that causes the pacemaker to trigger off, or just feels so uncomfortable.
For the first few weeks it felt as though I had a giant brick inside of my left chest. When I bent over to pick something up etc., I felt a strong pressure or tightening, as if there wasn't enough room for 'things' to fit inside, and then I'd feel a little dizzy or nauseous for a few moments.
Even when I experience the least pain I feel discomfort from wearing a bra (not the straps, the band that goes around my chest) or a sarong.
My doctors ordered all new tests, but seem to have dismissed my symptoms, just as long as the pacemaker is doing it's job. The echo-cardiologist mentioned a small amount of fluid, but other than that I have no indication of what it can be. I simply try to be as active as possible.
Does anybody know whether there's such a problem as the heart having enlarged (with or without the pacemaker) that might cause these symptoms? Or any other suggestions please. I'm off in a couple of days for another stress test/ecg., but I just have no idea what I can say to the Drs.

5 Comments

I've felt that way too

by VonnieVern - 2008-02-09 07:02:30

Some of your pain will probably go away with time, but I understand how you feel right now. Some people know that they wouldn't be alive without the pacemaker, but others received a pacemaker as a decision made together with their doctor to improve their quality of life - it may or may not have ben essential to have at the time. I believe that in either case, those involved in making the decision for you getting a pacemaker are ethically obligated to help you resolve the problems that may stem from that decision. Try any or all of these sugestions, as may best suit you:

Tell your doctors that as long as you are feeling pain you are not sure something isn't wrong so you need and/or expect them to keep looking for an answer until you find one.

Ask for something for pain relief at night or when you're experiencing the worst pain, with the expectation of eliminating it's use as your pain improves.

Go to another doctor for a 2nd opinion.

Talk to your non-cardiac physician.

If you were referred to the doctors involved in your surgery by another doctor, go back to that doctor.

Ask any doctor involved in your healthcare for a referral to another doctor.

If the doctors involved in your pacemaker surgery will not try to help you, let them know that perhaps you need to explore the posibility that your pain comes from something that wasn't done correctly in the surgery itself.

Call the patient care representative at the hospital where you had your surgery and explain your situation.

I also had "unexplainable pain" and my cardiologist and surgeon did nothing but suggest more surgery. Sometimes more surgery is needed, but I didn't think that was the best thing to try first in my case. I let my internal medicine doctor know how much pain I was in, and he looked for other answers for alleviating my pain, as well as talking to my cardiologist about the NECESSITY of trying to find something to help my pain. Talk to a doctor who knows you well and/or will listen to you that you're comfortable with about this.

Vonnie

Give it some time

by pacergirl - 2008-02-09 08:02:54

Hello Tshirt,
I too had some problems after getting the pacer. I had to finally get my head wrapped around the idea that I would be dead without it. It wasn't easy. It was also the truth. I had to accept the fact that I, a once very independent woman now needed something to depend on other than myself. It was very hard for me. No one understood what I was feeling. I had chest pain, my bra didn't fit right and darn it, I hurt! Plain and simple. My entire upper torso was in pain. One night I found myself trying to get it out while I was asleep! Yes! that's right. I was trying to rip it out!!! My hubby woke up and stopped me. I was a sobbing mess. I talked to a friend and he explained that perhaps my body was trying to adapt to this metal object in my chest. He suggested that I try to imagine this as my new friend. Get to know it, understand it. It helped me. After a lot of time I am very happy and pain free now. It was worth all the effort. I don't know if this will help you, but I went through a lot of adjustments mentally. I am once again healthy and happy and most importantly Alive!
Take care, be kind to your body.... it's been through a lot. We are here for you.
Pacergirl

tshirt

by jessie - 2008-02-09 10:02:33

hi i am like pacergirl one of the lucky ones on this earth. i was very upset at first and noone seemed to reall get it in my family. i hated having it and i worried it would just stop. i am 100% dependant so that was not a nice thought. as i lay in the icu with the temporary pacer in i i lay there and thought about my life and my choices. my diet was rotten. i smoked a package of cigarettes a day and i had quit but it was because i felt so rotten. i lay there and decided i would never smoke again first off. i am doing fine. i had a patch on in the e.r. and i handed it to my husband. after the episode i went cold turkey and i can honestly say. i am doing good. i don't really miss it at all and my husband and i are both now reformed smokers. lol i had days for at least a year where i cried for no reason. i was very emotional. i was not sleeping at night and worrying as i lay there. i got some help for all that and can honestly say things are much better. our grandaughter turns twelve in may. she is doing super good and is a gift from god. same with buddy who is eight. i love to talk with both of them and best of all spend time with them. it is a different world out there now. they are coming again this summer there fifth to spend a month here with us. we have a pool in the backyard now and it is great and they love it. all i can say is i did not feel like pulling it out but it bothered me all the bumps and lumps to get used to. so all the best. i hope it gets better for you. talk about it on this site. give yourself time. you are probably young like susan (pacergirl) and i was 64 so it is somehow different altho i did not know i had anyting seriously wrong with my heart at least i had had all those years. good luck take care of yourself and check in here jessie

thanks everyone

by Tshirt - 2008-02-10 03:02:45

Thanks for all of the good advice. I'm not so young - 55 - but I've never smoked and drink very moderately, and I've always been health conscious, so yes, I do rather resent the necessity for the pacemaker, and have difficulty convincing myself that I need it. But, yes, I do realise that I'm lucky to be alive, and to have the fantastic medical facilities available to me.
I did visit my GP. He seemed to agree that I shouldn't be experiencing these symptoms, on the one hand, but just stated that he didn't know what was causing them and for me to just turn up for my specialist appointment - which at that time was still 3 weeks away.
I suppose I could try another GP, but tomorrow I'll take all of your advice and try to insist that they at the least give me an explanation!
Thanks again - just talking to someone who doesn't just dismiss what you say as if you're some kind of fool, is reassuring.
Tshirt

Throat toghtness

by SLondon - 2008-02-25 11:02:42

Hi just found this site looking for Pacemaker info
I'm 63 male had the pacemaker for two years, have tightness in chest,throat and get problems with sleeping on both sides, due to various pains, doesn't seem to get any better for me. I am reassured that others get similar symptoms!
The surgeon that put it in was a bit casual for my liking, and the technicans that check it perodically don't all seem to understand the results. 6 months ago they said I had a list of problems and should get a full heart check-did that and they didn't find anything-went back to the Pacemaker clinic- they didn't mention the previous readings!

Anyhow enough complaing I guess I shall have to put up with it and that No Country for Old men won an Oscar-terrible film!

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