7mnths post op and they finally treat me for chronic osteomyelitis, anyone else suffering?

I completely understand I was recently diagnosed with osteomyelitis in my t9 and t10 of my spine it is extremely painful and I often feel like people think it doesn't hurt me as much as it does. I'm currently on my fourth week of intravenous antibiotics of a 6 week order . because of pick line in my arm my insurance wont allow me to complete my medication from home. and have been in a nursing facility for the past month. Although the people are great here me being away from my everyday life is really taking a tole on me I'm feeling better slowly but still in a great amount of pain. Feeling alone and scared if the treatment don't fully work what will I do. The morphine pain medication I take does help but i still feel a considerit amount of pain. It is a pain I can not see myself living with forever. I feel because osteomyelitis is so rare people dont realize how serious and painful it can be.

Man, I hate hearing these stories, but also am trying to prepare myself in case things don't go well.

I had a tib/fib pilon fracture that developed a fracture blister on Dec 3, 2016. My second surgery was Dec 30, 2016. On April 19, 2017 I was diagnosed with an infection on the tibia plate - I noticed on one set of paperwork they had osteomyellitis listed...not sure if that's a general term for any infection, but I was under the impression my ortho was going to remove hardware if the bone was infected - during the debribement he left the hardware in there for now (most likely will be removing it later this summer).

In the meantime I was also referred to an Infectious Diseases doctor, and I'm currently started on 6 weeks of IV antibiotics to keep the infection from getting worse - from what I understand, the chances of killing it off with the hardware retained is slim to none, but my ortho is trying to buy a couple more months of bone healing to reduce the chance of re-fracture (which he believes would be way worse than what we are currently dealing with).

My infection is from enterbacter cloacae, not MRSA at least, but not a good one to deal with, either. Currently being treated with Cefeprime, which seems to have generally good resuts on the enterobactor bacteria from my research.

I'm just really glad my doctors did NOT mess around with this - as soon as I presented with symptoms, I made an appointment, and was literally in surgery 14 hours later for clean/debribe/culture and a visual check on things. Oral antibiotics until they got the IV stuff started.

One thing I can say - BE YOUR OWN ADVOCATE. Read the journal and scientific articles, know what your options are, know if your doctors are following good protocal or not - and if not, SAY SOMETHING. Ask questions, but doing your own reasearch helps you know what to ask!

I'll be asking my ID doc about the status of the infection - is is actually in the bone, what are the chances of it becoming chronic, etc....

HI chelsea (and others) - pretty sure I'm no where near the end of this potential mess, just at a lull for me. On Dec 3, 2016, had a tib/fib pilon fracture. Surgeries seemed to go okay, but the area where a fracture blister had developed was stubborn about healing. I was released for weight bearing, and about 3 weeks later had an infection manifest over my tibia plate. Other than the delayed healing on the blister, until that week, no symptoms of an infection.

I was in surgery for a debribment the next day after the appointment I got with my ortho. He immediately referred me to infection diseases, who started me on 6 weeks of IV antibiotics and a PICC line. I'm now on oral antibiotics until we pull the hardware in a couple months. Since this, the skin has healed well and things *seem* to be okay, but from everything I have read, we're never truly in the clear.

Best wishes in your recovery, and it's sometimes just nice to know you're not alone, because you are right, other people just don't get it!! I don't have a SO or close family, so end up dealing with most of this alone or begging help from friends. They try to understand, but I don't know of any who've gone through it themselves...

Hi Chelsea,

I'm newly diagnosed with this after ORIF of elbow and I'm scared it will not be beaten. Would love an update on how you're doing! I have no found a success story yet

Nancy

Unfortanetly most doctors dont understand the disease either. Mine said i was delusional. Making up symptons. Labeled me as mentally unstable. Lisfranc collapsed, fever, chills, unbelievable pain for months. No painkillers, Asked what am i trying to pull when I started using a walker. Im a 52 year old male.