osteomyelitis pim spinal cord

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Hi . I have had osteomyelitis in my spinal cord and it's been almost two years since. I still have very bad pain in my back . I just had an MRI done , the third and my doctor says it very much improved . I spent almost a year where I could hardly walk and had a pic line in for almost four months. Just wondering if anyone else has had a similar experience and does anyone know the long term prognosis ? It feels like my spine is being pulled apart . I'm 59 years old and worked my whole life. I filed for disability because I'm losing everything I worked my whole life to build. Am I alone? Any thoughts would be appreciated. Thx

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  • Posted

    I'm so, so sorry! My prayer goes out to you! You are not alone, this is VERY common. I had OM in my upper jaw bone due to surgeon error/negligence 4 yrs ago. Have needed many surgeries, oral & IV antibiotics, HBOT to treat. As it stands I still have much pain, ongoing. Scans (MRI & CT) are negative for infection (that doesn't exclude low grade status of infection that scans aren't sensitive enough to show).

    Im in county of USA, access to good hospitals, female, mid 40's & in otherwise good health, they misdiagnosed me for over a year and don't take my pain seriously. This has ruined my life. Got to the point I cant work & am financially ruined.

    I can't speak to spine OM, however OM anywhere has commonalities. Hate to be bearer of bad news, but based on all the medical literature, case studies, OM is extremely challenging to treat & never considered "cured", only in remission like cancer. Every case is unique/different based on many factors including how it developed initially. The only hope for control of symptoms/fight infection is that you remain vigilant & proactive, persistent to your doctor's. Early, aggressive & decisive treatment is key! You must have a highly proficient surgeon, infectious disease specialist & pain specialist working together. A surgeon cannot adequately treat chronic pain & episodes of acute pain due to OM infection. Being on opiates or equivalent pain meds creates a whole other set of problems that must be managed.

    Only you know your body best regardless of what any scan or doctor says. If you have significant, persistent pain 4wks after your last course of antibiotics ask for a nuclear bone scan & bug your surgeon. You may need another debridement, HBOT (hyperbaric oxygen) w/antibiotics. Blood work, lack of fever & scans often show false negative in OM/bone infection cases. IMPORTANT; If a bone biopsy is taken make sure a PCR is ordered in addition to standard culture. Some people get very lucky & get infection under control, I hope this is you. But far more people as in my case, have their OM case horribly mismanaged that compounds problems & worsenes, extendes infection or creates a entirely new infection (polymorphism in bacterial infections).

    Any infection in the spine is deadly serious. Do your own research, education so you are equipped w/knowledge on disease & can challenge your doctors when you think they're wrong or in disagreement.

    All the best!

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  • Posted

    Hi, No you're not alone. I also had it in my spine. They had to do 8 spinal fusion to get all the infection out. What started out as a simple back surgery, 2 spinal fusion and I got Staph in the inscion. Well it healed on the outside fairly easy. I got to where I had a hard time walking and never felt good. I told my Dr's nurse practitioner and they would call me in antibiotics. As long as I was on the antibiotics I would do better. This went on for almost a year after my 1st and 2nd surgery. The 2nd surgery they took out the hardware but never cultured the surgery site to see if I still had infection or what kind. Long story short my pain treatment nurse practitioner felt sorry for me because I would cry to her and tell her I never felt good almost like I had cancer or something. So she set me up for MRI. The MRI came back Osteomyelitis. So immediately I was set up with

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    So I was set up an appointment with a Disease specialist. They ordered a PICC line to be put in my arm and I took2 different kinds of antibiotics through that for 12 weeks.They did another MRI right at Christmas and took the PICC line out. Well it wasn't 2 weeks later I got really sick with fever nausea and I could barely walk. Had to call ambulance. Went through a hell of an ordeal to finally get transferred from my hometown Hospital to the one out of town where they had done the original surgeries. So 2 days later they did my surgery to clean all the infection out of my spine. 8 spinal fusion it took to clean it up. I also have rods in. I spent 10 days in St Dominic's hospital and then they transferred me to Anderson South in my hometown to get therapy on my legs because I couldn't walk or barely move my feet. And while I was in the hospital I fell and got a double compound fracture on my right ankle at 2:30 am in the morning. It was horrible!!! So I ended up spending 105 days at Anderson. I still take antibiotics by mouth every day. I still have lots of soreness and pain. I also had to apply for disability and I'm waiting on hearing right now. I had to leave the best job I ever had. I was there for almost 10 years! This Osteomyelitis crap has turned my world upside down!!!!!

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  • Posted

    Hi Fwaite; you are not alone !

    I was diagnosed with spinal osteomyelitis & discitis in 2015 - I was told during my 7 weeks in hospital that due to lack of circulation it is the hardest area to treat. I had a pic line for 20 weeks & now 21 months later - like yourself the ongoing pain is unbelievable. Due to bone destruction I ended up with spinal instability & am on the wait list for surgery to put in some rods in my spine.

    I've also been unable to work & it was a hard pill to watch helplessly as my career came to an end. I saw a terrific psychologist who helped me greatly. My faith was a big help in putting "life & things" into perspective. The silver lining in this ongoing pain filled experience has been in losing my independence - I have some amazing ppl who selflessly help me. Also I've become a sort of go to friend for ppl struggling with their own stresses- it started probably because I'm not busy with working - you are still valuable & I hope u have a good pain management plan in place - if not ask ur dr for a referral to specialist pain management.

    Long term I don't know either. But we are the lucky ones as spinal osteomyelitis has a high mortality rate. So we are survivors & our experiences can help the Drs learn how to treat this rare disease.

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