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osteomyelitis ? i never knew i had it,until it was too late (why)

Posted , 16 users are following.

william22670
william22670

osteomyelitis is a disease of the bone and or surrounding tissues, two catagories , acute & chronic.

acute if diagnosed early enough,is treatable with courses of anti-biotics once the germ/bacteria has been identified..

chronic is mainly treated with possible anti-biotics and or surgery , such as debribement , where infected tissue /bone is removed, again , tissue/blood samples may be taken to identify germ/bacteria which may or may not have caused the symptoms.

if bone is removed , there is only a certain amount that can be removed, ie enough good bone at either end of the infected bone also has to be removed to ensure that all of the diseased bone and possible tissue is contained within, which is whats known as debribement.

i am not a doctor, i am a sufferer of this disease, and th opinion i have expressed is made up of extensive research into my own condition, which i urge every person dealing with this disease , ask question,s from your gp , ask for mri/ct scans blood tests , dont be fobbed off , this is not a common disease, before anti biotics and further advances in medicine , osteomyelitis , severe/chronic was mainly dealt with by amputation. it is believed that i had this disease for over 15 year,s, yet after having mri/ct scans and blood tests and nuclear medicine tests, over this period of time .i was still none the wiser, it was only approx march 2013 when i was diagnosed with chronic osteomyelitis and being told i will have to have my left leg,below knee amputated, that was the only time i heard of osteomyelitis. turned my entire life upside down.

there are a number of causes of osteomyelitis , apart from poor blood circulation,diabetes, this disease can also be caused by bone fractures, open wounds taking a long time to heal. foreign bodies ie metal screws,plates hip/knee replacement joints lots off oporation,s , i am fighting a daily battle, i have a long,long way to go , i dont give in easy.

but i feel in my case , some health proffesionals are to blame,for missing my symptoms long ago, which i am now looking into. so what i say to anyone suffering this not so well known disease, do not take it too lightly.as i believe i should have been diagnosed atleast 3 or so year ago, i had the exact same tests then as i did at the start of 2013, CHRONIC OSTEOMYELITIS doesnt happen over night, i feel i would still have my leg now if it had been diagnosed earlier . MUCH MORE needs to be done,to make potential sufferers more aware of this disease and its symptoms, ie people who have had numerous operations for bone fractures, hip/knee joint replacements , screws/plates implanted aswell as people with blood flow problems to lower limbs , wound healing problems etc. i do hope i have not bored anyone.

I JUST SAY THINGS HOW I SEE THEM, (IF YOU DONT ASK ,YOU WILL NEVER KNOW)

3 likes, 25 replies

25 Replies

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  • alison35381
    alison35381 william22670

    Posted

    o my god i am so worried right now. after repeatedlly taking my autistic son to A & E inJuly they just sent him away saying he had sprained his knee take pain killers and it will heal no x rays nothing. on august 5th by pure coinsidence he had an orthopedic apointment as he wears orthotic implants for  flat feet. he complained his ankle hurt and knee. The doctor order x rays who imediately saw an issue and ordered mri. he was sedated and scanned on sep 6th and saw the ortho's registrar on 25th sep., he said he had chronic ostemelitis that unusually went through his growth plate and now had a brodies abscess also. After repeated calls to the ortho secretary last friday they said he needs debridgement and cuterrage of abscess if i got that right, he is sceduled for 21st october.  i have no clue what this means, why this has been left to continue for three months and wouldnt have been diagnosed without totally coinceindence and my persistance to sort... what is the recovery time?, will he need to stay in hospital? will he be in plaster or restraints? can he carry on after with sport? my son had a slight limp for aged they said behavioural ? i havent even heard of this until bow. school even made him continue with PE as no doctors note? after this surgery whats recover time? many thanks in advance. x
  • cherie09073
    cherie09073 william22670

    Posted

    I have just been diagnosed with Osteomylitis in my lumbar spine. I still need to have blood cultures done. I'm waiting on the VA system to approve for !me to have that done locally; so I don't have to drive to Durham. I need all the info I can get. I had a discectomy in December 2013 due to sciatica. Was fine for four months and then WHAM! Couldn't move and had to go to the ER by ambulance. They never did xray, a CT nothing. I finally called my VA doctor and said I think I need an MRI. That was in July. Had my MRI in late August. Now I have had a second MRI to confirm it. I work in the local hospital, and one of the hospitalist has gotten me so freaked out saying I need to be in the hospital to get a PICC line a TEE and a lumbar puncture because this could go to my heart valves. I'm having panic attacks again because she said that. I know this is serious, but is it that dire?
  • jennyjuniper
    jennyjuniper william22670

    Posted

    Hi William I'm in a similar position I'm 33 and was misdiagnosed for 5 years. My story is below, best wishes

    Hi guys I'm Jenny I'm 33 and I have just been diagnosed with chronic osteomyelitis in my ankle joint - cuboid and foot.

    I'll start at the beginning. 5 years ago dropping my daughter off at preschool a child ran over my ankle on a pushbike. I heard a crunch but as I could walk I just got on with it. Since then my foot and ankle swelled a few times a year and caused me severe pain. I went to A and E each time and was misdiagnosed with a sprain, then eventually told "well its not broken, so it must be a muscle injury go home and rest". This went on for 4 years and atleast 20 A and E visits. Finally, after a particularly bad episode where I was left unable to walk for 3 months - I was crawling around my house - I developed golf ball sized black cysts on the swollen foot. I returned to A and E - the previous week they had told me to go home yet again and not too come back because it wasn't broken and there was nothing more they could do! - anyway I returned, they said it was infected and operated striaght away. My foot was black, half of it was dead from the infection.

    They debridged the bone and cut away alot of dead bone. Then told me I had chronic osteomyelitis. I have a huge whole in my ankle bone that they packed - it was agony each time they pushed anything into the whole, I screamed the hospital down despite being given morphione it just didnt touch it. Waking up was awful after the operation I was in so much pain they gave me ketamin which was the only thing that helped, but not for long. Anyway, I was sent home after 2 weeks in hospital. I had daily antibiotic injections that made me really sick and a nurse who came daily to change my wound dressing and pack the wound - god how I dreaded that visit. After 10weeks I could limp about but my foot is still numb most of the time and grey and cold. It doesnt react to temperature and I still cant walk on it due to the pain.

    After more tests and an MRI they have now told me they can't treat it because the infection is so bad my foot is riddled with it. The only option is amputation of my foot, or too live with it. I can't live with it, I'm in constant agony. Despite the fact that it can't be healthy living with an infected limb, I worry about it travelling up my leg and having to loose the whole leg. The pain has shifted slightly towards my ankle confirming what the surgeon told me, that the infection has spread throughout my foot and ankle. At the best of times I have a constant dull aching throb and can't put weight on it for more than 1 minute. At the worst I'm screaming in agony. Pain killers seem to do nothing. I now work nights to try and reduce the amount of time standing but even this is getting hard to do.

    I'm 33 years old with a 7 year old child that I can't take ice skating, out for a walk or even sit and watch a film with - it hurts more when down on the floor. If they'd have taken me seriously to start with my prognosis would have been so much better. I've decided to let them amputate it, atleast I will have a better quality of life and some mobility which I don't have now. Plus hopefully the infection can't come back if they cut it off?

    Its great to hear other people have been through this and my thoughts and best wishes are with you, I wouldnt wish this on anyone.

  • chelleyah77
    chelleyah77 william22670

    Posted

    Hi William,

    First of all your story of what has happened to you can s not boring, thank you for sharing what you did as I am in a similar situation , I have chronic Osteomyelitis but have not had my leg amputated, it came close to it though as 3 months had passed after my two surgeries following a broken fib/rib, I had High Surgical Steel Plates fixated to join my bones, well I some how got the Staphylococcus Bacteria and Psuedomonas bug , my C Reactive Protein Levels were at 420 , I had a PICC line and IV anti biotics for 6 weeks followed by 3 months of orals , but 15weeks into my recovery the Drs did not pick up I had an infection of any kind , but I kept saying my leg really hurts , I fell sick and run down and tired , I feel hot and feverish, my leg was still quite swollen and tender , sore to the touch , felt like it was burning and stinging , I generally felt really sick, then one day my plates broke with the bones in my leg , and my Drs had made me feel that it was all in my mind, that I was over reacting in fact because I had asked for a stronger pain killer Mr Dr made me feel like a pill or drug junkie and another reason they ignored my condition until it got worse, if my plates had not broke I'd probably have no leg or probably dead .... I am suing the hospital for doing this to me , truly for 12months my life has been utter hell, now my bones will not unite together which mean the Osteomyelitis has damaged my bone and the marrow , I have a metal rod inserted inside down the tibia in my ankle and knee joints and still in pain , the infection has gone , however it can re occur as the rod has a film coating that the bacteria is resilient to. So now the rod needs to remain in my leg for two more years, it also may never come out, I have one leg now shorter than the other and have to see a Podiatrist to get my legs measured and an instep for my right shoes so I'm level and it's just goes on and on , a simple surgery to fix a fractured fib/tibia can turn out like this , so much for the 6-8 week healing period, oh no I'm still recovering 12 months later and still have a long road a head of me ..... So I feel what your going through

  • chelsea91977
    chelsea91977 william22670

    Posted

    I had a ankle fracture and required metal plates and pins etc,

    The clamp used to hold everything together pierced my bone and infection set in... so I'm completely flummoxed that for 7mnths during which time I had debridements and oral antibiotics not one consultant thought it might be osteomyelitis even though they couldn't shift it and all my symptoms pointed to it!!!

    Eventually happened to accidentally be treated for debridement for yet another time and happened to have a infection specialist do the op... only to discover what I already knew..

    surely when you operate risk assessments to the patient are done - so why don't they test and look into any symptoms before patients have lost their lives as they knew them..! It's cruel !!

  • sharon84824
    sharon84824 william22670

    Posted

    hi william,                                                                                                                                        i had a open wound for 7 years that would not heal. i didnt go back to dr because i lost my insurance. When i got health insurance once again i decided to go to a wound clinic.  They told me i had a bone infection and did a bone biopsy to determine what kind of antibiotic i will be on. I received a picc line and am getting injections every 8 hours of cefalozin. The dr said it should only take about 4 weeks to clear, but considering the pain i doubt that. I was thinking more like 8 to 12 weeks. Well i just wanted to touch base with someone who knows my pain and can relate.   take care and feel better.
  • tena44467
    tena44467 william22670

    Posted

    Did the onset of leg problem originally caused by fluid in the knee. You see I believe I I have this I had an MRI and have a large spot on my spine I asked my pain management doctor he's say the the report said nothing about an infection and dismissed my question I suppose because I don't get fevers which I attbute to pain med it contain atiamitphine which is like tylonal sry for bad spelling my lastest sytom is a out of the blue swollen knee it doesn't cause more pain per say just leg discomfort that doesn't go away I have some heat in the knee and the swelling is worse I want to go to er but I'm afraid there just going to wrap it and send me home I'm tried of being over looked unfortunately for me my own husband isn't much help you see he's adicted to my pain Meds so his only concern where's he getting his next pill from. Don't get me wrong he loves me but not enough to stop stealing them which is my only life line without my pain Meds this pain would kill me

    • caroline00304
      caroline00304 tena44467

      Posted

      I have suffered with bone pain for quite a while and I have mentioned this to my GP the pain in hips and knees they have said Arthritis and then the leg pain they actually haven't got a clue and just give me pain killers to help which really are no help at all. I suffer with clotting so they have said to keep wearing my elasticated socks which should help to ease my discomfort but not cure.

    • tena44467
      tena44467 caroline00304

      Posted

      Well i to had clot before my two back surgeries I did do the blood thinners because they also pose a health risk so I tried leech therapy. And it worked for me. I don't take blood thinners but should do another leech session you leech great creatures have an anitlaglint with last in our bodies for up to six months but first they open up the attires that have the cloth and for the first day the toxins come out of our leg the antiglint thins our blood with out Meds which is bad for us look it up pretty amazing creatures 

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