Patient Comments: Osteomyelitis - Experience

Question:

Please describe your experience with osteomyelitis. Submit Your Comment

Comment from: Pkk, 25-34 Female (Patient) Published: May 07

I am a known sickle cell who has chronic osteomyelitis on the right hip joint where the head completely vanished. I had an incision and drainage put in about 14 years ago, and the wound is still draining. It gives me much pain and puts it in crisis, it has been really hard. If I can get more help in how to treat it so I can be pain free, I will really appreciate it.

Comment from: Sunsetter81, 35-44 Male (Patient) Published: January 18

It has been basically the worst ever. I have osteomyelitis where my collar bone meets my sternum. I went to several doctors and hospitals for weeks before they listened and found it. They debrided it twice, took out part of my collar bone, sternum and part of a rib. It’s been 10 months and still not completely healed. Because it was caught so late it has done permanent damage. I hope this never happens to anyone who reads this. My advice is, be educated and get a good doctor early. Thanks and good luck.

Comment from: Bernard , 19-24 Male (Patient) Published: July 20

I’m a patient in a hospital four months today. I have osteomyelitis and the doctors told me there are some small holes in my ribs and it has tightened my chest, but the problem is they are very weak. I can’t even sit down only on bed always. The doctor has done many exams, echography, biopsies, radiography, and many more but they are all negative!

Comment from: Shay, 35-44 Female (Patient) Published: April 24

I woke up one morning in severe pain in my lower back. It caused excruciating spasms in my hip and down my right leg. I couldn't walk. There was no explanation for the pain and it was the worst I'd ever experienced. I thought I had maybe slipped a disc or something. I had never experienced back pain before so I didn’t know if a disc slip cause such severe pain. I did not go to the ER (emergency room) right away hoping it would get better. It did not. After a week I began running a fever and having the worst night sweats and chills. That's when I went to the hospital. Because I presented with a fever, along with pain I was ordered an MRI which showed osteomyelitis and discitis. They also spotted a small epidural abscess on my spine. I was admitted to the hospital. That was one month ago today and I'm still here. I have 2 weeks left of my course of IV antibiotics after which I will be discharged on oral antibiotics for at least another 2 to 4 weeks. I'm very lucky this was diagnosed so quickly. If you suspect you could have osteomyelitis, the most telling sign, for me anyway, was the pain. Severe pain just doesn't adequately describe it. It's blinding. To the point I worried I would black out or go into shock. Also, the lost range of motion. If you have these symptoms along with fever, do not delay! Seek treatment immediately. This has been a very difficult experience and I'm now worried about the possibility of having a chronic condition. It's painful and scary.

Comment from: Patti, 55-64 Female (Patient) Published: July 21

I am or was a healthy person. Two years ago, I woke up to my right foot red and swollen. I was given an antibiotic. Four months later, I was rushed to the emergency room and then flown to a CDC hospital where I was diagnosed with osteomyelitis. It had settled in my femur and traveled up across my pelvis. I had 2 lesions drained and scraped. I was in so much pain. Never before have I experienced this kind of pain. I could not move my lower half. After 3 months on strong antibiotics, I was able to move around. However the infection is not gone. Some days the pain is so bad that I cannot move.

Comment from: ShaZ4071 , 45-54 Female (Patient) Published: July 05

I've been told that my osteomyelitis is so bad I have no chance of recovery and all they can do is keep me comfortable until the day I go. I'm now in a hospice and the doctors stopped the antibiotics 3 or 4 days ago saying I have weeks or days left. I'm 46 years young and been paraplegic since 2003, my 1st bout of pressure sores occurred in 2011 which were grafted, etc. Things were good till Christmas 2014 when my skin started to break down and sores appeared again. I'm now on the bare bones of my seating area with no genitalia to speak of and I'm not scared of dying, I would just like to know how poorly I am going to get!

Comment from: ivona, 75 or over Female (Patient) Published: September 09

I developed osteomyelitis in 1941 when I was 2. It was not cured until 10 years and more than 16 major operations later, finally till I was operated twice on my right femur and it was cured. As a result I have horrific scarring and one leg longer than the other. However since that final operation (aged 12) I have had no further need for treatment at all. I was lucky, some did not survive it. Nowadays this would not happen, thanks to treatments and drugs and expertise which were not available in the 2nd world war.

Comment from: dragonfly, 45-54 Female (Patient) Published: May 29

I woke up one morning in extreme pain in my neck and shoulder with a small red dot on my collar bone that grew rapidly over the next week. After 3 months of oral antibiotic and a doctor treating me for MRSA, a friend that was a nurse referred me to an infectious disease doctor and he diagnosed me with osteomyelitis within 30 minutes. I ended up having my collar bone part of my sternum and part of one rib removed because of the delay in treatment. If I had not finally taken my medical care into my own hand and insisted on a MRI and a new doctor I would be dead today!

IMAGES

Osteomyelitis See pictures of Bacterial Skin Conditions See Images
Comment from: kerry, 7-12 Female (Caregiver) Published: February 12

For three weeks my daughter aged 12 has had a really sore toe and redness and a bit of pain. I took her to the local general physician who prescribed antibiotic. Well, with 2 courses of this the symptoms got worse with blood tests that showed nothing. I asked for an x-ray to be done, we had this done and she was sent to the emergency department (ED). At the hospital she was diagnosed with osteomyelitis in her big toe. She had surgery, lost 25 percent of her joint and stayed in there for 5 day with IV antibiotic. Now she is home today with 6 weeks of oral antibiotics. Concern is she is still with the prospect of more surgery at later date.

Comment from: Cutie pie, Female (Caregiver) Published: August 05

I began with hip/ pelvic pain while doing gymnastics. Several months later, bad fevers began. Every day they got up to 103 to 104, for a month. I never had really bad pain. It was difficult for the doctors to figure out my problem. But once I got sent to the children's hospital and the infectious disease doctor saw me, she sent me to get a bone scan, and then an MRI which showed my infection on the sacrum. I never experienced lots of pain. Just sometimes my bottom hurt, and my sides (hips) felt sore. It was the constant fevers that finally made everyone know something was wrong in my body. Not everyone will feel severe pain with osteomyelitis.

Comment from: MERCY, 25-34 Female (Patient) Published: July 31

I had osteomyelitis when I was 9 years and now am 30. I underwent medication for more than 10 years but currently free from infection. It lead to fused knee and now am thinking and worried if I should undergo knee manipulation to relax my stiff knee. I always wonder how I got it.

Comment from: LLemons, 45-54 Female (Patient) Published: May 07

I was diagnosed with osteomyelitis shortly after my 50th birthday. I had the most horrible pain ever in my right femur. At first I thought it was arthritis, and the pain worsened. I was admitted to the hospital and was diagnosed. I had a 3rd world infection (no idea where I got that) and strep in the femur after staying in the hospital for 9 months. I had 12 surgeries and a rod was placed in the femur; I am doing well. Cold and rainy weather make my leg ache but I am so thankful to be walking.

Comment from: John, 55-64 Male (Patient) Published: February 14

I was diagnosed with osteomyelitis when I was nine years old, it was in my femur. My symptoms started with severe pains in my stomach which was only eased by bringing my knees tight up to my chest. Then the pain started in my thigh on a night, with hot sweats and the pain was unbearable. My mother sent for the doctor who had me rushed into hospital, and had an operation the following morning. I woke with my leg in a splint and I was transferred to a children"s hospital where I spent another nine months. I was given a handful of tablets to take each day with daily injections. I am 64 now and played active sports all my life without any problems.

Comment from: sunny, 45-54 Female (Patient) Published: January 08

I came out of my bathroom and the pain that hit me was the worst in my life!! I've had 4 bone diseases for several years, but with pain medications I have managed. I had my sister call 911. They sent me home saying it is arthritis. So a few days later I went to a real hospital. It took 8 people to get me out of the car while I was screaming! The pain was so unbearable! No medications would touch it! They figured out I have osteomyelitis in my right hip. It is IVs for me now, then an antibiotic implant and then a hip replacement. I'm in a nursing home right now!

Comment from: Mariana, 45-54 Male (Caregiver) Published: November 27

My partner has various health problems including a nonfunctional kidney. A couple of weeks ago he had a really sore neck so rested it in the hope of it getting better. However, even though he was nursing it and lying flat, the pain got worse. He started to have sweats, severe headaches and couldn't eat or swallow properly. We went to the doctor who couldn't determine whether he had a problem with his kidney, heart (had a bypass) or with his artificial hip. After being put in the hospital, the 6th doctor ordered scans for osteomyelitis. The CAT scan was inconclusive but the MRI scan showed an infection in the 5th vertebrae. I was told this could be treated with about 6 weeks of intravenous antibiotics but the doctors decided to operate immediately after another scan the next day. Apparently he could have been paralyzed without the operation. He has a bone graft from his good hip, and a titanium plate/cage to protect the area. He has been flat on his back for the last week but luckily has movement in his arms, legs and extremities so with good physiotherapy, will get through this and walk again. This was a very scary experience and I am grateful for new diagnostic tools which probably saved his mobility.

Comment from: pinkiecanuck, 19-24 Male (Caregiver) Published: December 14

My father was diagnosed with osteomyelitis when he was 19 years old. After he was hit by a car his leg became infected and over a course of 3 years or so his leg could not be saved and was amputated. I always wondered if his children would be more prone to get this as well. This happened in the 1940s, I wonder if it is easier to control now.

SLIDESHOW

Bacterial Infections 101: Types, Symptoms, and Treatments See Slideshow
Comment from: vic008, 65-74 Male (Patient) Published: December 29

I broke my femur 40 years ago. Last 5 years it has been weeping pus pretty well nonstop. I have no pain or anything. I had tests and osteomyelitis is confirmed. Meanwhile I am doing nothing about it.

Comment from: Keith, 65-74 Male (Patient) Published: November 20

I suffered from osteomyelitis, I was on crutches from the age of 7 until I was 12. I was treated in children's hospital until I was referred to a private specialist who cured me. I played all sports and I am now 71.

Comment from: Kay, 7-12 Female (Caregiver) Published: March 31

My son is in hospital after being diagnosed with a staph infection in his hip, blood and bone. He has had surgery for the osteomyelitis and in 17 hours of that the pediatric team and nurse had physiotherapy started; this was way too early. They now, after a week and half, want to go back in because they feel the seeping at the site should not still be happening.

Comment from: 101stVet, 19-24 Male (Patient) Published: September 06

I related in the "Symptom," page having severe calf pain while a Soldier in Vietnam that was initially, but incorrectly, diagnosed as a deep vein thrombosis. Beginning first with an evacuation hospital in Vietnam, then on a hospital ship, I was treated with IV Heparin, an anticlottIng blood thinner. After almost 10 days I was taken to a Military Base where a needle biopsy disclosed the osteomyelitis. Following several days of blood products to reduce my clotting time, doctors performed surgery in an attempt to save my leg. That wasn't possible because of the extensive damage to large portions of bone and muscle tissue, so the following day my doctors amputated my leg as a knee disarticulation as a life saving measure. There had been several pockets of the infection in the posterior of the residual limb that the doctors excised, and I was begun on a potent regimen of antibiotics. That was all 45 years ago. I was fitted with a prosthetic leg at a Military hospital the following spring and I haven't slowed down since. In fact, the prostheses that I'm wearing today is "state-of-the-art" and smarter than I am.

Comment from: yvonne, 25-34 Female (Patient) Published: August 23

I have had a non-healing wound on my finger for 10 months. The wound would heal and get worse, heal and get worse. It caused significant pain that would travel down the bone into my hand. The doctors suggested osteomyelitis, but it was inconclusive on the MRI. I am preparing to have an amputation of the finger because traditional methods are not helping and I believe I had a late diagnosis.

Comment from: Claire, 13-18 Female (Patient) Published: July 29

In 2012 I was diagnosed with Osteomyelitis in my right pinky finger. I went 6 months after jamming my finger before my mom finally decided to take me to a doctor. At the time I did not realize how severe my finger was. I just thought it was weird that my pinky was the same size around the knuckle as my thumb. Although I had no severe pains at times it would hurt to clap. The doctor prescribed antibiotics for me, but after a month there was no change in the shape of my pinky. Now it's 2013, and my finger is still swollen and I am confused as to why the antibiotics did not work.

Comment from: kristy7971, 25-34 Female (Patient) Published: June 05

I was hit by a car in 1989 when I was 9 years old. I'm 33 now have had 23 surgeries. I was diagnosed with osteomyelitis in my tibia at age 11. I have had so many flare ups in the past 24 years, including cellulitis and now MRSA. I have to have my leg amputated because 10 years ago I nicked my bad leg with a razor while shaving and it triggered osteomyelitis. I have a plate with screws that are exposed and I have had an open wound for 10 years now. I have diabetes and the list just gets longer once you have osteomyelitis. You are never the same.

Comment from: FL571, 65-74 Male (Patient) Published: May 06

I was diagnosed with osteomyelitis of the right fourth toe, do not know where I contracted it, currently have had all the tests and I am on an infusion pump with antibiotics for the next five weeks. Also I did not have any pain.