Still sore after 18 months

Hi Im a newbie from England. I had a st Jude fitted 18 months ago,  I suffer from fibromyalgia and although I told the surgeon that, he still insisted I didn’t need a general anaesthetic so it was done by local anaesthetic and I felt some of the surgery,  The pacer and area around it is still sore after 18 months, and I don’t think they pushed it in far enough as the surgeon realised I was in pain during the procedure, but on repeated appointments when I’ve complained about the soreness and the way it flops when I turn over in bed, they insist it’s ok and blame the discomfort I feel from it on the fibromyalgia.  anyone had the same problem?



by Tracey_E - 2019-07-28 09:14:37

I don't have fibromyalgia so can't comment on if that would keep it from ever being comfortable but turning when you are in bed is not normal. Mine shifts when I sleep on my side and it drives me crazy, flipping would be much worse.  I go back and forth if I should have it repositioned or not, it's more annoying than painful. My doctor said if I want to do it, we will do it. Btw, this is my 5th, and the surgeon didn't put it as deep as the others. The other 4 were very comfortable and I could sleep however I want so I know it's possible to make it feel better.  If it's been over a year and still isn't comfortable, if it's moving, I don't know why they'd give you a hard time about repositioning it. Maybe it's time to get a second opinion?

Depends a lot on what you mean by 'flop'

by crustyg - 2019-07-28 17:18:21

Hi: I also had my dual-chamber PM implanted with just local, at my request, and because it took longer than planned *and* my EP doc didn't put any adrenaline in with the local I felt all of the PM insertion into the pouch - which hurts as they deliberately make the pouch slightly too small and then stretch it as the box goes in, the big stitch that anchors the box to the bottom of the pouch and all of the skin sutures.

If I lean forward, and relax I can make my PM 'flop' about - but it's still properly anchored to the base of the pouch, it doesn't turn over or slide around within the pouch.  Sitting up, it's nice and steady and hardly moves at all.

My EP doc said that he did a straw poll of his colleagues: he does all of his PM implants with local+i/v pain relief (fentanyl is his choice) while all of his colleagues that he asked use local only. He wasn't impressed with my request to have no sedation or i/v fentanyl, so you have my sympathy - couple of parts are really quite uncomfortable even without an underlying issue.

I suggest that you make a short list of things for your next EP doc visit, and don't leave his room until you're satisfied that you've had adequate answers.  Get him to examine your implant site and show him what you mean by 'flop'.  It's possible that the anchoring suture has broken - this needs to be fixed as eventually it's likely to produce a broken lead.

thank you for your replies

by Salsa Lasy - 2019-07-31 13:54:03

Thank you both  for replying back to my post.  I only asked for the local because I had already had a history, with the fibromyalgia pain -  of feeling procedures.  When I had a cataract removed, I don't know who jumped highter - me or the surgeon when she cut me.  And when I had a colonoscopy I screamed so much they must have heard me in the car park.  So I thought it reasonable for me to ask to go under,  to avoid causing me such pain because locals just don't work fully on me  

I have been back 3 or 4 times to the heart hospital  and complained about the movement of the pacer and how it is  still painful and sore.  They finally acknowledged that sometimes can happen to patients,  after fobbing me off for months, saying give it more time.  The dr said they could re position it but it might not be any better and then said there is a danger of infection which could be serious if I was unlucky enough to get one.  So it simply put me off in the end which was probably what it was designed to do. 

Again, with the fibro, it took me a few weeks to be out of a lot of pain after the pacer was fitted.  My shoulder was really affected after the op and I still have a terrible pain and stiffness between the pacer and my shoulder and also acute pain down my arm so much that I can no longer lay on that side which is a nuisance as it was the normal side for me to go to sleep. Best wishes from England

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The pacer systems are really very reliable. The main problem is the incompetent programming of them. If yours is working well for you, get on with life and enjoy it. You probably are more at risk of problems with a valve job than the pacer.