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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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  • Susie4016
    Susie4016

    Posted

    Hi William,

    I just responded to a posting above and then saw yours. I am so sorry about your leg. It is just terrible.

    Your experience helps me formulate my thoughts when I see the Maxillary Surgeon again on Thursday.

    They have been putting me off with antibiotics, and 3 debribement procedures.

    They seem somewhat unconcerned about my condition. I started reading about it and am still shocked.

    I don't know where this is going, but I'm thinking I'm not going to get the help I need from the Maxillary

    Surgeon.

    Thanks for your help.

  • william22670
    william22670

    Posted

    good morning suzie,

    thank you for the reply to my post , and i am sorry to hear about your situation, i will be here to offer any kind of support i can, the thing that first got me curious about osteomyelitis was when i saw the word osteomyelitis on a examination form when i was undergoing tests back in early march 2013, i asked the nurse what osteomyelitis was , she just said it,s one of the things they look for , that was it, no further disscussions until i was given the diagnosis , chronic ostemyelitis a few weeks later.

    for me suzie , i was and still am quite shocked as to how the laid back the medical staff etc dealing with my issues seem to be. what i will say suzie , DONT BE FOBBED OFF DARLIN , i had to find information myself about this disease, i found a great deal about it on the internet , as soon as i got home after seeing it written on this examination form . i wish i had heard about it much sooner , but im not going to dwell on the past , for me what,s done is done, , but dont let it drag you down suzie , ASK THE DOCTOR,THE PEOPLE TREATING YOU FOR ANSWERS, BE DETERMINED , i sincerly hope and wish it isnt as bad as you may think , but we are human beings and when things like this happen in our lives,it causes anguish , upset and worry for the future, you have a right to be treated with respect and you should not be ignored, i understand your having anti-biotic treatment and have had some debribement operations, i feel for you , i really do suzie , if you do feel your not getting the answers you need from the maxillary , ask/insist on being reffered to another specialist , it is your right , thats the thing with us human being,s its so easy just to accept what is said to us by these so called doctors etc , because of the lack of knowledge about the medical terms mostly used by them , where not guiney pigs either, so suzie if your still not happy with how you feel you are being treated , make sure you let them know , this illness like any other serious illness effects how we live our daily lives , mentally and physically. dont wait for them sending you letters etc about your treatment , we all know how long it takes these people to do anything , i would contact them atleast once a week or so, and voice your concerns most strongly. like i said at the end of my last post , IF WE DONT ASK,WE WILL NEVER KNOW..

    so suzie when you see your surgeon again on thursday , before you go , i would write everything down that has you concerned about your condition/treatment etc, tell them openly and honestly how it is effecting you , mentally/physically, tell them how much you want to move on with your life, HOPEFULLY by doing this suzie it will be the kick up the backside they need , to get you back on track to having your life back with a more positive future ahead for you.

    so keep your head up suzie , if what i have said makes a difference,thats good , its nice to voice our opinions.

    god bless .

  • Susie4016
    Susie4016

    Posted

    Hi William,

    Thanks for your support. After my visit last Thursday, I believe they think they have no further responsibility for me. They suggested a pain management specialist, offered a referral for a second opinion at my expense, and will not provide an MRI to determine what damage has been done to my bone and exactly where the infection has spread to. They did give me another prescription for 10 days of Bactrim. They did offer to remove my implants, but the site of my implants is not sore, and I have no pain when I tap them. The gum around them is pink, and not swollen. This infection has moved below my chin, to my neck, side of my neck, and has given me a constant headache, sore throat and impacts my swallowing. I am very worried at having yet another procedure where the skin is opened, as there has been disastrous results every

    time this was done in the past. Plus, I don't know about the complications when the bone is cut into,

    leaving it exposed. As I am reading on the internet, an MRI will answer these questions. My insurance will not pay for it as they consider it a dental procedure. I'm stuck.

    I did finally get a copy of the culture results from the March 9 test. Here they are

    Heavy growth - Vindans Streptococcus group

    Heavy growth - Gram negative diplococci (Saprophytic Neisseria)

    Moderate growth - Enterobacter cloacae

    Light growth - Stomatococcus

    They want me to go back on Monday morning when the head of the department wants to "confer" on my

    case. I'm assuming he is also the financial guy. Like you said before, i'm going to write down everything and hope I can convince them of their moral and medial obligations.

    • jamie30365
      jamie30365 Susie4016

      Posted

      Hi Susie,

      I just came across this forum and relate with your situation. I have similar problem as you from botched and infected dental implant surgery 3 yrs ago. It's been a nightmare, totally debilitating and turned my life upside down. Please let me know if I can help sharing any information, I would be happy to help someone else going thru the same struggle. It took me over 2.5 yrs and seeing over 20 surgeons to get properly diagnosed & treated. So far I've had 3 surgeries, hyperbaric oxygen treatment and over 1yr of antibiotics. I'm an otherwise healthy person in mid 40's. My last surgery was 4wks ago, major under general anesth. Hopefully it will fix the damage, but I will not know for many months to come. The chronic infection has left me so weak and horrible pain. I haven't been able to work. There was bone/bone graft and soft tissue

      infection. For chronic infection (more than 6mo) you need a team of specialists. My infection started as dental, but now it's a full-blown medical problem. Just having an oral surgeon may not be adequate. In addition to oral surgeon I have pain, infectious disease and sinus specialists. It's a battle getting doctors to take you seriously and get the right treatment. I hope you have gotten better. Take Care

    • sandie96589
      sandie96589 jamie30365

      Posted

      Hi Jamie, I am going through almost exactly what you are going through. Are you better now?
  • william22670
    william22670

    Posted

    hi susie , i really feel for you , you,ve gone and are still going thru some tough times, try not to let it get you down , easy for me to say, as i myself are dealing with different issues, but i really understand where your coming from, my best adviceto you susie,is dont give up the fight, you are entitled to proper care and treatment from all of the medical department,,s dealing with your health issues, here in the uk as long as you where born here in the uk or have the legal right to live in the uk , i am most certain your are entitled to free medical treatment thru the nhs, like i have previousley said susie, people in our situation etc find it just so easy just to be fobbed off by the way we feel we can be treated by the medical profession,when they use certain termonology, but we have the right to fair and proper treatment , to be treat as a human being , not guiney pigs, just be strong susie and dont ever give up , they have a duty of care to ensure your health and well being, im sure if you keep on at your gp your voice will be heard and as a result you will be given the best treatment possible for your situation for the future.

    hope you wrote it all down to show them how it effects you living your daily life , keep on at them ,but dont let it get you down , you can still live your life. each day can be a new day ok.

    regards billy

  • debbie02705
    debbie02705

    Posted

    your story is very interesting William , my son when he was 15 complained about a rash on his leg , this was in the april , we had many appointments at the hospital over the following months , in the june he saw a surgeon who did a scan and low and behold he had a deep abbess , that night he went down to surgery , at last I thought , the end of this problem , later that night I saw the surgeon who showed me a piece of what he called plastic that had been in my sons leg , I at the time thought it was a piece of bone and had that put in his medical records ,by this time I was thinking of what was really going on but chose to believe the surgeon , this was early june , he had a nurse coming roung daily to treat his abbess checked , we asked every day what the histology results were . by September we once again returned to the hospital by which time I was really angry , and demanded an x ray which then proved he had cronic osteomyelitis , this nasty bone had been half eaten , .the next 6 weeks were hard he had 5 hour surgery followed by 6 week hospital stay , only to return again 6 months later , this is a very hard thing to deal with and I found that you have to keep nagging at the doctors , we were told that its a rare thing ,but my son now29 will have to live with all his life , so every time his leg hurts our gp sends a referral of to the hospital where he is seen fast , has bloods and mri scans , so at the end William you need to be on top like you said, and I hope at the end of it all you will be on the top , good luck and fingers crossed it doesn't get any worse and Susie keep in at them x
  • william22670
    william22670

    Posted

    hi debbie , so sorry to hear about your son,s issue over this terrible disease, its made me an even more firm believer never ,ever give up on asking questions, pressure those medical individual s or departments to ensure your son gets the right treatment he so rightly deserves , the thing with chronic oesteomyelits is it can keep coming back, but aslong as your son doesnt ignore the symptoms that he has been dealing with in the past,ie , rashes on the skin, any wounds in the area that dont heal well, obvious swelling, pain and discomfort,along with any other symptoms that first raised your concerns, like i said earlier in my posts, i never even heard of osteomyelitis , when i saw the name on a medical form when i was undergoing ct/mri scans i asked what osteomyelitis was, i was just told by a nurse its just "one of the things they test for "no further explanation,s . i had to look it up myself on the internet to find out more about it.

    i hope your son does not have to have any further intervention, best advice , do not be fobbed off by the medical people dealing with your sons treatment, they all have a duty of care to ensure every patient receives the right care,support and treatment neccasary.

    for me losing my leg at a time when my career , my home and my personal life was going really well, have taught me no longer to take things for granted , we only have one life. i will always fight for my rights in everything that i do, i dont give in so easily. i am a happy go lucky type of person ,who always looks out to help others , that has always been my nature, im dealing with new challenges every day , there are far worse off people than myself, but i shall always be true to myself.. be proud of who you are, keep up the fight , be strong for your son.

    regards william

  • debbie02705
    debbie02705

    Posted

    hi William thanks for that ,I can assure you im on top of my son all the time as so is his partner , he did have a slight problem last year but medication worked , the funny thing was that his best friend at school was in hospital the year before with the same ,it opened my eyes thank god or we may not have had a son today .his last visit to see a general surgeon was a bit of a push as I had decided enough was enough ,and demanded an x-ray of which showed osteomyelitis , we arranged with a new surgeon for him to go into hospital the following week after a week of antibiotics , he had bloods taken and off we went home we didn't get home as he was admitted as an emergency , it was a very scary moment at the time ,and were told that if I hadn't demanded that -ray that he would not have made it at all, he lost 50 % of bone and has a scar over 14 inches long ,my moto for the story is listen to your heart and don't allow any one to tell you other wise . my son did not have any other signs what so ever ,my son now knows how to think out side the normal box of life

    thanks William ,I hope you don't get any more trouble from this , take care Debbie

  • jay196314
    jay196314 william22670

    Posted

    Hi William, I first heard of this disease today when I attended the walk in centre. I was shocked, no sorry I was not when I first heard the term, However I was mortified when i looked it up.

    I am diabetic with heart failure and have had a number of heart attacks. Now I am told that I may be in a spot of bother with this thing, but they cant say at the moment until they have done tests etc etc. I tried to laugh it off and to be fair the nurse she said this is serious stuff that needs sorting. It may cost me my life.

    I have read your story and as a result I will attend all the appointments they make for me.

    I wanted to thank you for takng the time to share your story and to let you know that your words may have helped me to save my legs and life GOD BLESS you.   

    • william22670
      william22670 jay196314

      Posted

      hi there jay,

                        so sorry to hear about the health issues your dealing with , the important think to remember is for you to stay in control jay , easier said than done i know only too well , but you have a life worth living for and a life worth fighting for, hell we only got one life, i refuse point blank to let anything beat me, since i lost my leg it made me such a stronger person , more determined in that i will not allow myself to be fobbed off in anyway by any health professional who is treating me , from my own gp to the vascular surgeons and so on , you must ask questions from the health professionals treating you ,more so with you also being a diabetic , dont let this rare disease off osteomyelitis scare you , if it has been diagnosed early enough it is treatable with anti-biotics once the germ/s have been identified etc. i do hope with all my heart jay that it isnt as serious as you may think , like you i hadnt even heard off it until i was getting my last mri/ct scans done and was diagnosed with chronic osteomyelitis a couple weeks later, as long as you stay in control , write things down, questions you want answers to if there is anything your not sure about , have them ready each time you go for tests etc, the health professionals treating you have a duty of care to ensure you are well informed as to what you may or may not be dealing with, and also to receive the right treatment. i know you already have a lot to deal with ,  a heart condition , diabetes , and now the unknown certainty of this recent issue , osteomyletis. jay you have to be strong , and true to yourself , its important not to stress yourself too much , just having the heart condition alone is a great deal to contend with , but i am sure in my own beliefs of what i myself has went thru so far , that it makes you realise whats actually important in life , and it does make you a stronger person , just dont give in , we can only do our best i know when these things come along and knock us sideways , i choose to fight every day , i treat everything i do now as a new life experiance , i dont take things for granted anymore , im still the same person inside , yes since losing my leg things are more challanging both mentally and physically , if there are people out there ,friends who cant accept the changes that i have gone thru and they shy away from me , then there not true friends which doesnt upset me , it surprises me at times, but hey jay i live my life by my own rules , if you have family and friends who care about you , i believe you will have all the support you need to help you get thru this.  once i was diagnosed , i kept a diary of all the treatments and tests etc and wrote down questions i wanted answers to , if i was told by a health professional after i had attended an appoinment something like , we,ll get back to you in a few weeks time , i would only ever wait a week or so , i would hound them on the phone until i got the answers etc, justtry to remember this jay, advances in medicine and treatment options have come a long long way , but also remember jay , you have a right to be treated with respect and dignity thru out the entire time that you are going thru all of the health issues your dealing with , remain strong , you cant afford to let this latest thing stress you out, especially with having a heart condition , rest assured it will be dealt with once all the relevant tests etc have been carried out. no two cases are the same jay , once i was diagnosed with it , i looked it up on the internet , and there is a monumantal amount of information on there , which is easy to take to heart , but like i said earlier jay , NO TWO cases are the same , and the best advice that i can give you at this time , is to stay in touch with your gp , the medical dept/hospital etc that is carrying out any tests , keep a file for this latest issue , i have a medical file system i set up for myself , with a separate file for each medical condition that i have , ie , heart , diabetes , chronic osteomyelitis , muscle atrophy. so if there is anything that i have been unsure off when going for treatment etc , i can just go to the relevant file and pull out the letter etc and ask questions when i go for treatment or just have concerns.  i just want to help all the people that i can , thru this site , it knocked me for six when it happened to me , so i dont mind passing on any kind of help or support , just be strong and true.

      cheers for now .

  • caroline00304
    caroline00304 william22670

    Posted

    The beginning of the year I started having leg pains it has gradually got worse this last few months. The pain started in my hip then my knee now it is all my leg and mainly comes on at night time. I have tried different medication even Tramadol and Paracetomol together it is still very bad. I don't sleep much because of the pain and during the day I feel very tired and lathargic especially when walking. But then when I sit down for an hour or over I feel that stiff and my bones hurt. I have had x rays the GP has said I have slight knee changes nothing more. My sisters keep telling me to return to the doctors and get my pain sorted which after reading your story has got me more thinking that yes I am going to return and push the GP into more tests.
    • Susie4016
      Susie4016 caroline00304

      Posted

      Hi Caroline,

      I want to respond to both William and to ask you for help.  I also responded a few months ago.

      I was diagnosed with osteomyelitis earlier this year after tooth implant surgery and 4 debridments.  The test results were:

      Heavy growth - Vindans Streptococcus group

      Heavy growth - Gram negative diplococci (Saprophytic Neisseria)

      Moderate growth - Enterobacter cloacae

      Light growth - Stomatococcus

      The maxillary surgeon said I had osteomyelitis and then dumped me saying I should go to an infectious disease specialist or a pain management person.  I was given a 10 day treatment of Bactrim as I went out the door.

      It got so bad I went to urgent care, who first did tests which were negative for the above bacteria, (we didn't have the test results back yet,) then gave me an IV of Levofloxacin, and referred me to an Infectious Disease doctor.  It was hard for me to believe 10 days of Bactrim would clear osteomyelitis.

      Good Infectious  Disease doctors are hard to find.  Mine put me on 2 months of Levofloxacin, which was pretty rough.  I go back to him in a few weeks. I still feel that low level pain in my jaw, and I know it is still there.  I don't know what to do.  If I have surgery to my jaw, I am told I will lose 1/3 of my jaw.  I am sharing my treatment and test results so maybe we can start to know what blood tests to ask for and exchange info about good and bad antibiotics.  William, I am wondering what blood tests you had, and I am hoping to figure out what blood tests would help me find out whether or not I still have osteomyelitis..  Even the Infectious Disease doctor said it can hide and look ok on a blood test.

    • sandie96589
      sandie96589 Susie4016

      Posted

      HI Susie,

      did you ever get better? I see this post was a while ago. I am going through the same thing. Any info you can provide will help? Thank you.

  • kischr
    kischr william22670

    Posted

    Hello william,

    i joined this forum to get some feedback and hopefully to help others, clearly from your posts you care the same. I live in the USA and things are a lot different medically/financially but the disease and the stories are similar. My heart goes out to you and i wish blessings and health for you. 

    i see your communications with Susie and have great concern for her. My bloodwork never showed the problem for 8 months and they missed it on the MRI the first and second surgery/hospitaliations. Like you they could have saved me an incredible amount of suffering and financially, as in the US it costs a LOT! The financial strain is overwhelming as is the other stress involved. Through my experience the thing that sticks out to me is my lack of information i had and physicians lack of experience with getting this diagnosis. You are so correct about pushing to get answers. They did not know what was wrong with me until this infection was coming through my skin and it was located in my chest wall under my right pectoral muscle and clavicle bones and joints. It seems you have done a lot of research, i still dont know how i got this. I had no cuts, no surgery, no hardware of any kind. At one point they told me they thought it started with a broken rib but no findings of that at any other surgeries. I have had three occurances. I am not a diabetic and as far as my medical history - no circulation problems. It is so strange and the germ was a form of Staph but not MRSA. For those who join your attitude to keep fighting, i say Absolutely! I have a number of medical problems now as this seems to have crashed my system, affected my liver and due to sepsis almost took my life. Your advice and encouragement to others is stellar and i say thank you. God Bless you. If you have any further info from your research about other causes i would appreciate the info. I am 3 months clean blood work and crossing my fingers. Kischr  

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