Pain after 3 months

I had a pacemaker implant 3 months ago and am having terrible pain at the site as well as my shoulder, down my arm and along the leads. Dr. says he has no idea why and he's done all he can do except take it out. Anyone else experienced this? I'm new to this club and feeling desperate.

8 Comments

infection?

by Tracey_E - 2013-05-09 03:05:13

Have they done cultures and screened for infection or rejection? Both are very rare but not unheard of.

Pain/infection?

by tigerlily - 2013-05-09 04:05:18

TraceyE Thanks for your response. Dr. says he's never seen this kind of pain and has "nothing more to offer." Who else would search for infection or rejection? I feel that I have been left dangling alone. My GP offers only pain meds.

Another EP?

by Yakkwak - 2013-05-09 09:05:59

Consider getting a consult with another EP.

eye roll

by Tracey_E - 2013-05-10 09:05:55

BIG pet peeve, drs who have never seen it and don't know what it is so they write us off!!! Go do some homework, sheesh, they're the one with the degree. Anyway, enough soap box! Sometimes we have to take things into our own hands, unfortunately. Infection, an infectious disease specialist can do the blood work to make sure you don't have an infection brewing. Rejection, I'm not sure, maybe an allergist could test you for metals? If you do a search of past posts, we have had a couple of people here who had metal allergies, you could see what they had to say, maybe contact them. Both of these are very rare, but if I were you I would want to rule them both out because they can get serious if ignored.

I'd also be looking into another doctor, one who's more responsive and not afraid to say "I don't know but let me find out". I had some problems once, settings related, and after 4 visits my cardiologist and St Judes rep were still stumped and I was still unable to exercise. Instead of telling me to get over it, which I was expecting, they both did some research and when neither could find anything similar they sent my files to St Judes to make me a case study. The engineers who developed my pm had a powwow and came back to us a week later with recommended settings. There are drs out there who will go above and beyond, but sometimes you have to hunt to find one of them.

Have you tried alternative medicine, like acupuncture or chiropractic? They may not help, but you have nothing to lose by trying. Pain meds are not a long term solution, imo, so don't accept that as the only answer until you've exhausted every possibility.

Just found this

by singingtothewheat - 2013-05-19 12:05:54

http://www.pacemakerclub.com/public/jpage/1/p/story/a/storypage/sid/9770/content.do

Talk of pacemaker movement with the primary symptom being severe pain.
Fyi

agree

by singingtothewheat - 2013-05-19 12:05:59

I could not agree more with Tracey E. This is how I ended up with a pacemaker in the first place. An idiot lap band Dr. who refused to even entertain the notion that he jacked something up. Nearly killed me too.

Get another Dr. If this Dr. is seeing you via a hospital and your not getting any satisfaction go see the Head physician in charge of all the other physicians.

similar thing

by kiwigirl - 2013-05-21 01:05:49

Happened to me. the pain started just under the pacemaker site and travelled up my neck.

my family doctor told me not to waste the pacemaker clinics time because the pain is all in my head, even though I yelped when she touched the site.

I found another doctor who found I had a slight infection in the wound even after 6 months.

I have an appointment with the pm tech on thursday so hopefully he will be able to explain why I had an infection after so long

I hope you get things sorted out

all the best
Katherine

Pain/3 months

by tigerlily - 2013-05-21 02:05:00

Thank you all for your comments. I called a clinic @ 200 miles away and have an appointment Wed. May 22. I am just seeing whoever is available. Hope he is competent and compassionate as I am at wit's end with pain. I had hoped to be able to get a recommendation (thank you singingtothewheat for yours - 600 miles doesn't sound too bad, but for follow-ups, I realized it would be hard) but am just praying this guy is my answer.
What is with doctors who think pain is not real? We have nothing to gain by that and it only adds to the depression and desperation.
I will post after seeing this guy. Thanks again to all.
TG (tigerlily)

You know you're wired when...

You have a maintenance schedule just like your car.

Member Quotes

A lot of people are and live normal lives with no problems whatsoever.