Pelvic osteomyelitis, p.acnes, staph neg coag.
Posted , 4 users are following.
Sorry this is long. I'm just gonna explain! You can skip to question at the bottom if needed.
For years I suffered with debilitating pelvic pain. It slowly got worse until I was in a wheel chair for anything that involved walking for more than 10 minutes. I was diagnosed as osteitis pubis of unknown origin for most of this time. Imaging showed bone and cartilage deteriorated over time. The front center of my pelvis, my symphysis pubis, had lost all cartilage between the bones and had eroded into both sides of my pelvis.
It started sometime after I had my first, maybe even my second child. At least 3 years ago. They were 1&2 when it started getting really bad, they are now 3&4 years old. It took a long time to find a Surgeon who could help me, most wouldn't touch me because they didn't know what caused it. So I finally found a surgeon and on 4/20/16 I had a bone resection. They biopsy bone and tissue, cultured etc, and out of everything only one grew anything so they figured it was a contaminant. Well 2 months later I still wasn't healed from surgery and continued to get worse. Started draining pus, went up for a wound clean out in hopes that was it.
Ended up that I had a bone infection the entire time, it was just undetected/undetectable the entire time. I did not have a fever, no redness, blood tests were all normal except for sedimentation rate. So when they opened me up they had to take out even more bone and tissue in hopes that they got the whole infection cleared out. They also put antibiotic beads in my pelvis between the bones and everywhere, looked to be about 50 on my Xray. Then I was on a picc line for 3 weeks getting vancomycin every 8 hours, then another 4 weeks on moxifloxacin. I just finished those.
I had co-infection, original infection was propionibacterium acnes which led to staph coagulase negative also. P. Acnes grew in my original culture but they dismissed it.
I'm hoping this is the end of a long long road and that I'll be relatively normal. I'm currently doing better than I have in years, I can walk 1-2 hours before I have to stop. That's a lot of progress, but I haven't improved at all the last few weeks, I think I'm just the best I'll be. Damage is done type thing. They can't amputate my pelvis, in fact removing anymore bone wouldn't be good either. If they had to remove more bone I'd end up with metal plates etc to rebuild my pelvis I think. And then that just increases infection risk
I'm just curious from actual experience, how likely it is to come back. If anyone else had propionibacterium acnes as the original infection,because I can't find any information on it. Thanks in advance!
0 likes, 9 replies
xxthisismelxx amanda802
Posted
Following!
You definitely have had to deal with A LOT more pain/problems than me. In early October I started having back pain. Went to physical therapy, chiropractor, acupuncture, massage. Almost anything I could think of. Finally in March the doctor was like: "maybe we should do some imaging". Had an xray, that showed something questionable, next had an MRI, doctor was like "oh, maybe something is wrong with your back"
Had a thoracic biopsy, which was the most painful thing I've ever had in my life, the samples they took didn't grow anything, they couldn't figure out the bug/bacteria, etc. Had a PICC line for 8 weeks.
Here it is August, they say the infection has cleared pretty well, but since there's still some infection in there, they don't want to risk it.
My primary doctor "there's nothing I can do"
Neurosurgeon "there's nothing I can do"
1st Pain Management Specialist "nothing"
2nd pain specialist has prescribed me Lyrica.
I've tried any and all prescriptions for pain, nerve pain, etc.
I'm limited on pain medication, because opiate abuse is so big here, so I'm prescribed 75mg a day of OxyCODONE.
I'm at a loss, I have excruciating back pain 24/7 and I feel like they are give me the same treatment if I had a splinter or hang nail
amanda802 xxthisismelxx
Posted
Oh dear. I had the same problems with pain management. Everyone said I needed to stay with my primary doctor for pain management so I did. But then less than a month after my first surgery when I could hardly take care of my boys, she told me I needed to just wean off the pain meds. She didn't believe I was in that much pain, thought I was abusing them. I wasn't, and the next month was the worst I ever had from pain. I was p*ssed, I haven't seen her since and she was my doctor for 8 years! Thankfully I only have very minimal pain currently unless I walk a long time. Hopefully it stays this way. I actually had the option to continue my pain meds after the second surgery but I chose to quit taking them just because I had gotten used to dealing with it, maybe my pain tolerance increased I don't know. But even though I was in a lot more pain I was happier, I didn't feel like a zombie. Now I'm doing okay and I just hope it stays that way! I don't want to go back to the wheelchair. It's just too hard with two little ones
melindasmakeup amanda802
Posted
Hi Amanda
I have it in my right side of my jaw bone. It still causes me lots of pain, and I've had many surgeries and picc lines too. They can't scrape the jaw bone anymore because it's too brittle. So amputation is an option for me except there is many risks with that too. So I tried to ignore the pain for the last year and a half but to no avail. I'm so depressed whenever I have a pain episode, the pain in worse around my period. And the pain lasts a good 2-3 weeks, or the whole month sometimes. I had a couple really good months in the beginning of the summer, but now I'm back to being in pain most the time. Mine started out as p acne bacteria and also coagulase negative staph. The prominent and most persistent bacteria that they can't seem to get rid of is the actinomycetes bacteria. My face is a little swollen on the right side right now, it's been swollen for a few weeks now. I've had waves of nausea, fatigue, anxiety and depression. I don't know what else to do so I'm finally switching my internal medicine/infectious disease dr.
amanda802 melindasmakeup
Posted
Oh no I'm sorry! Mine was also always worse around my period. It was the worst it ever was going into fall - September- January were brutal for me. I spent a lot of time not getting off the couch. Financially this has killed us, traveling 6 hours away for every appointment means we have to stay the night, as our kids can't handle the car for that long.
My surgeon and the infectious disease team were in disbelief when we realized what it was. I think it kinda put my jerk of a surgeon in check. He seemed very humbled by it at the end, when originally he treated me like a pill junkie over exaggerating my symptoms. I've been trying to get on disability for almost a year and I keep getting denied. I'm hoping that at my hearing I'll finely be approved!
It's been a pretty terrible few years and I was a pretty miserable mom. I couldn't do much of anything and I couldn't take them anywhere at all. So maybe I'm overdoing it now and that's why the pain is sometimes bad. But I figure while I'm feeling good I should be out doing things with them as much as I can!
melindasmakeup amanda802
Posted
Hawkswing amanda802
Posted
amanda802
Posted
Me again. I'm getting a little bit worried that it might be coming back, or never gone all the way. My incision had looked great, healed beautifully closed all the way etc. Well right after stopping antibiotics I had a tiny miniscule pimple like thing appear practically on my incision. I assumed it was ingrown hair or irritation, because of where it is located. However, I thought it was going away and hadn't even noticed it the last couple weeks. Anyways yesterday I noticed it was red around that spot and tender. Just a tiny tiny spot, probably smaller than a pencil eraser. This morning it's bigger, and more tender. About the size of a dime that's red and it looks like it might be coming to a head or something. This just completely reminds me of the huge abscess like lumps I got under the skin that ended up being caused by infection. This is much much smaller than those, as those were about the size of a half a golf ball, but idk. I don't want to have to drive 6 hours up to my doctor if it isn't anything to worry about. Any advice?
xxthisismelxx amanda802
Posted
I'm not sure what it could be, but for me, I'd rather freak out and go to the doctor rather than waiting it out, and find out it's something really bad. But if it's red & tender, that suggests it could possibly be infected.
I wish you the best of luck and keep us updated with what's going on :-)
amanda802 xxthisismelxx
Posted
Yep it's definitely infection
I had two holes open up and they're slowly draining. They're not just little surface wounds, they're like tunnels, like I had before. So it's probably that my bone infection is back/never left. I'm going in tonight for wound cultures and get on antibiotics.