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Living with Osteomyelitis

Posted , 16 users are following.

clio2008
clio2008

I have never met or spoken to anyone with this condition before. I decided 3 days ago to find other sufferers and was given the link that brought me here. It is a big relief to find that I am not the only one, especially after living with this illness for most of my life.

I got infected on a christmas holiday to the village when livin in africa. I was 4 yrs old at the time, and I went for a wade in the stream without slippers on and when we got back to the city like 3 days later I was in agony...felt like something was crawling in my legs but no one could see anything and they even got upset with me thinking I was doing it for attention. Within 5 to 8 days both legs ballooned up, from ankle to my knees, I was rushed to hospital where both legs were incised and according to my mum a small bucket was filled with the puss they squeezed out...that was when my saga with Osteomyelitis started.. I was put on very strong concoction of antibiotics for 6 years straight, kept going for ops each time my legs ballooned up, I had constant fever for months and stayed in the hospital for 4 months or more on blood transfusion as it was making me anaemic..finally the doctors not knowing what else to do opted to amputate my legs but my mom would have none of it and discharged me from hospital, she was a nurse so she had the medical knowledge needed to take care of me at home. Couldnt walk for 2 years, then one day my right leg got better but the infection kept recurring in my left leg throughout my teens..but by my mid teens my bone had started breakin up and coming out whenever the leg was incised..by 23 I had developed osteoarthritis in my right leg (which was my good leg then).

We had lost faith in the medical professionals in africa so when I came over to the UK in my late teens we hoped they would know what to do for me, but unfortunately they were more perplexed by my condition than the african doctors and instead pumped me with more antibiotics which i finally became allergic to and had to stop taking after 4-5 years straight on flucloxacillin and fucidin. My GP had been made aware of my condition from the day I registered there, in 1996, but they felt, despite me telling them my history and my mom a nurse telling them, that a test was not necessary and medication would suffice. Years later in 2003 I came across a brilliant, sympathetic locum GP who took my condition seriously *she took the time to LISTEN to how it had been affecting my life* and referred me to a consultant in our local hospital. I never saw him but was seen by one of his team who decided to operate on my left leg in order to perform a debridement. But I was told an hour after the op that too much damage had been done to my bone and consequently in my post op clinic I was informed that as the bone was constantly breaking up there wasnt much they could do other than send me home, then anytime it got inflamed come back for more bone scrapping and filler put in. *What a Joke* The pain I was living with by that time had become unbearable as every step hurt so much and every nerve in my body tingled with the pain shooting up my legs I broke down and cried..I had night sweats every night that left my mattress soaking it had to be put out to air....I felt so alone, lost and in unimaginable pain and at that moment I was told this I became determined that I was NOT going to let another doctor or medical professional 'shut the door' on me again and I was not going to leave that hospital until someone helped me. I sat on the floor crying and demanding medical assistance. After security came I was put in a room with some nurses whilst the consultant was called out and a discussion amongst the team occured in the hallway, then a member of the team came in to tell me I was being referred to another hospital where there was a specialist.

This was in 2003. The specialist surgeon was not sure of what he would find but decided to take the chance and operated. This was in Jan 2004, 27 at the time. The procedure was a fibulectomy where most of my fibula was taken out of the left leg. A little was left at the ankle and the knee to enable movement/rotation. I was in recovery for 2 years before I could walk with a walking stick to return onto my university course to complete my last year in 2006. As I already had osteoarthritis in my left leg, my amazing locum GP referred me to the same surgeon to have a look at my right leg and in march this year 2008 I had a subtalar fusion of my right ankle. I am still in recovery but everyday gets better. The pain is not as extreme as it was before and I can live with that. I shall always use a walking stick but am ok with that. But what am not ok with is the brick wall *or shoulder shrugging* I hit whenever I enquired or told medical professionals and even people in general about my condition. Not enough is known about it hence the need for more research. There needs to be more support for people whom have/had this condition and their families. More information needs to be put out there to doctors, NHS trusts, social services departments, GP practices, Walk-in clinics, etc. They need to be made aware of how much this condition can impact on a persons life.

What has made my condition even harder to live with is not the purely the condition itself, but the ignorance of people who need to see a limb missing or something physically abnormal or mishaped to believe/accept that there is something actually wrong. I have always had a limp when I walked, but for some reason now I walk with a crutch people seem to believe me more....that should not have to be the case.

For anyone out there who has had or is coping living with this condition?

I just wanna say you are not alone, dont give up fighting it.

1 like, 13 replies

13 Replies

  • sadiec
    sadiec

    Posted

    What an inspiration you are! My daughter was diagnosed with this horrible infection 12 mnths ago.

    After 4 wks in hospital and 3 operations on her femur bone she was finally released.

    I agree more needs to be done on research to this awful infection, my daughter was in our local hospital for the first 2 wks and the consultants kept saying they had never seen such a case in all their consultancy days... not something u want to hear when your child is lay there extremely poorly.

    We were then sent to Birmingham Childrens Hospital where they were much more experienced in this field even tho they said that this conditon is rare.

    After 12 mnths of check ups she has finally been discharged.

    I still worry as u do hear that it re occurs in lots of people in later life.

    As the infection was so close to her growth plate they were worried about growth of leg but each x ray showed bone knitting back together nicely.

    She is now back doing all the things she loves ie ballet and jazz, and will be 7 nxt wk!!

    I hope you can finally get your life back and yes this forum is a great help to sufferers and their families.

    I know it has helped me understand things more

  • dregomax
    dregomax clio2008

    Posted

    Hi. My name is Chris and I'm 36 yrs old. All my life I've been as healthy as can be to point I can count on one hand how many times I've had as much as a common cold. That is until 5 1/2 yrs ago. I had a really bad vehicle accident that resulted in a bad crush injury of my left leg. My hip, femur, tibia, and fibula were broke and a lot of tissue was torn off on the front of my shin and around my knee. I was air lifted to orlando regional hospital where I was in an induced coma for 8 days. The first nine months my recovery seemed to be going well. The surgeons originally tried to reattach the ball of my hip with two screws going through my femur and into the ball. That did not work so they decided to do a full hip replacement. About 2 wks after my hip was replaced is when my problems started. My inscission turned really red and swollen. I went to see my orthopedic surgeon and he put me in the hospital the next day for mergency surgery. After having my hip replaced for the second timefollowed by 6 weeks of IV antibiotics ( vancomycin) I was told the infection was gone. after about 2 yrs  I started experiencing a lot of pain in my left hip and knee. unaware that the infection was coming back I assumed that the pain was due to the metal on metal hip that was installed due to the recalls. that was until the fevers started. shortly after I had an abscess pop upon my left leg. and he immediately pur me back in the hospitald me back in the hospital for another hip revision and irrigation of my leg. once again the surgeries were followed by 6 weeks of IV antibiotics. I was told that the bone infection must have laid dormant in the prosthesis.  I thought to myself ok that makes since but at least they got it now. Now it's been another 2 1/2 yrs and the infection has taken over my leg again. Intense joint pain and swelling followed by yet another abscess in almost the same spot as  last time. I had 2 more surgeries two weeks ago and am currently on iv antibiotics again!!!  I went to my orthopedics office today to have the stitches removed from my leg. I asked if I was the only person that had reoccurring infections like this or are there other cases of it as well. I was told that I was not the only case that  they have dealt with this problem. Until today my condition was referred to as a bone infection. Today they referred to it as osteomyelitis.i came straight home and started reading about it on the Internet which is how I came across your article. I've been holding out hope that this problem is something they could treat and rid me of but now I'm not so sure and I find that thought to be very discomforting. Are you still having to deal with the infactions? Is this infection a permanent fixture in my life that's gonna rear it's ugly head every couple years and put my life on hold for months at a time? So many questions and worries and so little info on the subject. I've dealt with this for 5 1/2 yrs now and until today ( 8/19/2014 ) I didn't know that my condition was called osteomyelitis or that I was not the only person dealing with this illness. If you have any info or tips on living and dealing with this I would be very appreciative. I've already completely change my lifestyle by quitting smoking and eating extremely healthy but here I am recovering again. I wish the best of luck to you and anyone else dealing with this!! 
    • macCB7
      macCB7 dregomax

      Posted

      Hi,

      I was wondering how you are doing. I just read your story and it is now 2017. I have some personal experience with this and was wondering if you are in the US or UK. Because if you are still having problems, I would like to refer you to my specialist who has invented and patented a new procedure for treating bone infections with great success. She treated me this way with great success.  

      What happened to me is that in 1981, I was in an accident and broke my left femur clean through, right above my knee and they had to put a titanium L bracked screwed into the side of my femur and into the knob of the femur.  I had that in there for about a year and then decided to have it removed because it was starting to protrude when my leg got its form back.. Anyway.  I went in for an outpatient procedure to have the plate removed and was supposed to go home that day. Well, they had to admit me with a fever for some reason and that evening i had a very high fever of 104 and my leg swelled up and green puss shot out of the incision when the doctor pressed on it.

      They determined that I had a staff infection (Staphylococcus aureus) and put me in isolation and IV antibiotics for 6 weeks in the hospital.. I recovered from that and had to go through therapy all over again and thought that everything was fine until 2015, when I started having strange pains in my left leg and shooting pains similar to a pinched nerve coming from my knee all the way into my groin and hip area. It was especially bad when I was peeing and using those muscles to push my pee out. I know it sounds strange but let me continue.

      This condition got gradually worse to the point that when these shooting stabbing pains would hit me, it was so bad my leg would buckle from the pain. So, I started going to ortho doctors for my leg and then for my hip. Had multiple MRIs and CT scans and xrays galore.all to no avail. I actually went to 5 different doctors and they could find nothing and I was starting to go crazy thinking that i might be making this up. Actually, I think that some of the doctors probably thought that I was trying to get pain meds to get high or something the way they were dealing with me. I didn't want pain meds I wanted a solution, like alot of people on this board.  

      So, finally, I decided to go to one more ortho guy and see what would happen. He was a young doctor, younger than me. He examined me and the first thing he asked me was about the long scar on the left hand side of my left leg. (none of the other doctors even asked about that and I never even thought to tell them the story) Anyway, I told him the story I just told here and he told me that there may be a possibility that the infection had laid dormant all this time or was growing all this time over 30 years. He said that before we did anything we had to rule this out as a cause. He told me the only way to determine this is to have a bone scan. This is where they take you blood and spin off the red blood cells and then take the left over white blood cells, irradiate them and while laying under a scope in real time, inject them back into my bloodstream. Well I went and had this done the next day and as I was watching the monitor, a cloud of white surrounded my femur exactly where I broke my leg!!!  I asked the tech if there was something going on there and he told me that he wasn't a doctor and could not advise me, but he said there was definately something there. 

      The results were sent to the bone specialist that I mentioned at the beginning of my story and sure enough they called me and told me that I had chronic ostiomyolitis. (a bone infection)  WOW, was everyone surprised. after 30 years it came back.

      That was on a Thursday and the doctor told me to check into the hospital right away for more testing and to prepare for surgery on Monday. I did as she asked and had surgery on Monday, where they dug into my femur and found a chestnut sized ball of infection that has apparently been growing all this time!  She told me that if I had not been persistent like alot of people on here that I may have lost my leg or died in the next 6 months if that infection got into my system. 

      What this specialist did that was so different than most is that she developed a compound that is like a paste or putty that is infused with antibiotics and after cleaning out the infection site, packed the hole with this putty and sewed me up. I still had to go on a regimen of 6 more weeks of antibiotics, like everyone else on here but I think what made the difference in this not returning and me not having any more reoccurances (that I know of so far) is because of that procedure. 

      If you are still having problems and have not found a solution it may be worth it to contact this doctor. and if you are interested I can give you her contact into. She also deals with deformities from accidents and resonstructive and correctlve surgery from birth defects. please email me directly at .  Thanks for listening. attached is a picture of the bone scan as it was happening.

      Mac

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • Irishlass123
      Irishlass123 macCB7

      Posted

      Hi, hope you are well now. I live in the UK, and I have osteomyelitis in my foot for the 3rd time in 2 years, from recurring ulcers on the sole of my foot. I am a non-diabetic currently on a 6 week course of IV antibiotics. I saw 2 OP surgeons last week who both advised I need an amputation of my forefoot to prevent the infection from spreading. Naturally I am shocked at this and don't want to lose my foot. I have Charcot Marie Tooth disease for 18 yrs now which has left me with no feeling in my feet, lower legs or hands. My right foot has become disfigured over the years, and I put all the pressure on one part of it which leads to the breakdown of the skin, which develops into ulcers. I have asked for various surgeries over the years, and the surgeons wouldn't attempt anything, basically as I believe they weren't confident and had no knowledge of my condition either. An OP surgeon I was with 3 yrs ago wanted to amputate my foot back then because of the recurring ulcers, and there was no mention of OM then, when I wouldn't agree to the surgery, he discharged me from his clinic. This leads me to believe that the real reason they want to amputate now is still because of the ulcers, as there was no mentioin of the OM being chronic, and one of the OP surgeons I saw last week has an 18 mth waiting list before he could do the surgery anyway. I have asked to be referred to a bone specialist unit at Nuffield Hospital, Oxford and the OP surgeon agreed to look into it for me. I don't understand why the bone wasn't debrided, as it was when I first had the OM. I have read up on this disease and understood debridement was very important. I would be very grateful of any help or advice you can give me please. Thanks.

    • Richie522
      Richie522 macCB7

      Posted

      Hi, thanks for sharing your story. I'm going through a similar situation with recurrent bone infections and was wondering if you could provide me the doctors info who ultimately helped you. Thanks

      Rich

  • jeannette1209
    jeannette1209 clio2008

    Posted

    My son was diagnosed with this osteomyelitis, a month after being in the NICU. He was born pre mature but was not born with this condition, I know this because he had movement of both arms. One month later on 1-7-14, I was the one who noticed he wasn't moving his right arm. No doctor or nurse had even noticed and when I brought this up, they said," oh it's common for newborns to have fractured bones, but no need to set in cast, it will heal. I demanded X-rays, since their blood tests showed nothing, and after MRI, cat scan of my poor 2 pound baby boy, they said they don't know how it happened, but they had to send him to her his joints drained and scrubbed. basically a nurse neglectfully had an IV in his right hand and moved it to the left. they denied it of course but luckily I have pictures to prove this. our son is now in therapy for his arm 3-4 times a month. He still is week and we are very afraid of this condition returning. I'm lost as to what to do from here? 
  • gwendoline333
    gwendoline333 clio2008

    Posted

    I too have chronic Osteomyelitis.  It has been with me since I was 9 years old.  Left hip, thigh and in face initially.  Operated on when nine and since my 20s it has visited me many times.  Now 66 and it is with me now causing so much pain.  

    I feel sorry for you as you really have never had a period in your life with you were free of it.  

    I have found most doctors to be nitwits when it comes to Osteomyelitis.  It seems to me they prefer to think of us as hypocondriacs rather than believe that we know our bodies best and suffer from this terrible disease. 

    I will be having a full body nuclear scan in a couple of weeks and that should show something.  X-rays are useless as are normal scans.

    I will keep fighting it as I am sure you will.  I hope we win.

     

  • ilmm
    ilmm clio2008

    Posted

    About 5 years ago, my mother was repeatedly misdiagnosed after experiencing excrutiating back pain. Prior to this, she had been an extremely fit and active woman-in all honesty more so than most being a single mother. Initially we were told that what she was experiencing was sciatica. At the time I remember being quite confused by this as I had had a teacher who had sciatica and he would tell the class about how he competed in running competitions. I knew my mum would not be able to do anything of the sort, but, being a reasonably naive 13 year old, I accepted the doctor's diagnosis. She was sent home with strong painkillers. 

    After a time, the pain,which had not gone away with said painkillers, came back a whole lot worse than the first time. Again we went to hospital, this time she was admitted to a ward. She underwent tests and scans and the hospital seemed flummoxed by her condition. At times she has said that she was sure they thought she was making her pain up. After a month or so of being in hospital, she was dicharged. We still had no explanation. 

    Again, the pain returned and after our family GP came out to our home and insisted she go to hospital again, she was again admitted. It soon became apparent that she had been 'lost in the system'. The results of an important scan had been lost. This time, she was moved to a hospital which apparently had a more specialist facility. On top of the negligent loss of scan results, a consultant at this hospital then informed us that an extremely important test had not been performed. This test would be the one that confirmed ostemylelitis. She was given a course of IV antibiotics-which continued after her discharge at home.

    After 5 years she still experiences severe back pain and walks with a stick. From my perspective, as her daughter, I see a person who is so physical different to the one before this vile illness. She is no longer an extremely active and fit woman, instead she still requires help to do certain things. 

    The thing that most bothers me now is that we were not told anything during this. We were told afterwards that the doctors were concerned that she may have had cancer in her spine. As well as this, there is a complete ignorance in the medical system regarding this condition. No one seems to know anywhere near enough. How can anyone with any connection to this illness trust the doctors if they dont know enough?! 

    Surely something needs to be done about this.

    • jeannette1209
      jeannette1209 ilmm

      Posted

      I feel your views and agree with you totally, not enough studies are being done, or are put in the media so that everyone can be aware of this growing epidemic. But how do we change this so that we can educate the professionals at better recognizing this in patients?
  • Guest
    Guest clio2008

    Posted

    Hello clio2008, I am deeply touched by your story and what you had to experience. I was diagnosed with osteomyelitis on my left hip when I was 9 years old, and they removed it because the infection had ruined my bone. I was told I had to wait till I was 18 to have a hip replacement. I live in the United States, and now I am 16 years old. I have always felt misunderstood due to my condition/ disability. I attend a public school, despite the fact I miss many school days. Growing up, I learned to live with it. I wish to talk to you because i am truly inspired by how strong of a person you are. I always felt like I had it bad. You mentioned you walk with a crutch? I do also. I have been walking with a crutch since I was 12 years old. People at school think I have nothing, while some pity me. I have considered home schooling, but I do not want it to affect my future. I wish to be a writer and attend college. Because of my disability, and because my school does not accept my absence excuse written by my doctor, I miss a lot and they count it against me. The education system is absurd. I may look normal and look healthy, but I am dealing with this every day. I am growing impatient to have my hip replacement, but coming across your story has opened my eyes. I realize I have not been entirely grateful. As you mentioned you've been in Africa, I want to share with you I deeply hope one day I can travel there and write about the animals. I love animals, the tiger is my favorite. Besides my love for writing, animals are my number one. I want to also say that this has impacted my life. I hope you read this, God bless you!
  • lacy82289
    lacy82289 clio2008

    Posted

    I am 33 Dec 2003 I was in a really bad car accident breaking my pelvis in 7 places broke my right wrist punctured my right lung broke my index finger on my right had having almost severed the tendent my spline was removed also part of my small intestine my bladder burst and my liver was nearly cut in half I was released from the hospital in February 2004 only a month or two after I ended up attempting to walk and re broke something on my left hip lower back area causing an infection to surface out through one of the scars on my back. Did I mention I also had to have a chain screwed in my pelvis holding it together I assume My dr not the operating dr but my pain dr diagnosed an treated me for staff infection with an antibiotic Bacterium he assumed the infection was most like on my hardwear. I was given the option to delay any surgery by having a pick line put in my left arm this type of treatment also oral antibiotics has been going on for 13yrs the infection reoccurring every few months or longer to almost once a month draining it is worse now ive contacted many dr specialist etc with inconclusive test results when a graph was done. I think its because of the antibiotics but I have a very complicated problem I forgot to mention ive also had a hernia thats trying to come through my scar on my stomach that goes from below my breast through my belly button and stops right above my private area ive had it for going on two years now. I have done much research only to dance around my actual condition never finding anything helpful really. My question is can i somehow help educate people with my condition putting it out there because I really might have messed up letting this infection ly dormant like I have just because I was scared but im having to deal with surgery very soon I did my latest ct scan 09/15/2016 just let me know please it is helpful just having found something alike my own situation thank u for speaking out it does help people.
  • tallpines151
    tallpines151 clio2008

    Posted

    Hello Clio2008! I just found this site today. I've read you story and can relate to a lot of the tragic events throughout your life. I hope things have gotten better for you in the last few years. My situation all started in 2012. I was 54 and healthy. One day while hiking, I got sever pain in my groin. Within 24 hours, I was in sepsis shock, flatlined and fighting for my life. I was diagnosed with staph infection of blood and bone with no point of entry. Osteomyelitis of my pubic synthesis. Pain like I never imagined a person could survive through. 2 months in the hospital, full body staph. My joint has since been removed. I live in constant pain of the goin, legs, hips and tail bone. All has been done for me leaving me to suffer on my own. Today, 5 years later, I manage it with opioids. I am so grateful my general MD is compassionate and kind. So many pain management doctors won't touch me, they are afraid of me, hehe! Not funny, really. I am drug defendant not drug abuser. This infection has destroyed my life as I knew it. Fearful of it coming back, as I know it may. Now, I also have ulcerative colitis, mixed connective tissue disease and Lupus. My body rejected a dental implant. My immune system is very bad since my infection. I have hope for something big in the future to help us with osteomyelitis. Trying to stay grateful daily for just being alive. Again, I hope you are doing well. 

  • belinda06074
    belinda06074 clio2008

    Posted

    I Live with this. I got it from a Dental procedure. If anyone out there LIVES with Osteomyelitis, Please contact me. I'm so depressed.

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