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Chronic femoral osteomyelitis

Posted , 5 users are following.

nige035
nige035

I consider myself to be a fit and active 44 year old man and my condition began in earnest with a painful knee at the beginning of March 2007. After a month of ineffective over the counter pain killers I visited my GP at the end of March and requested a private consultation with an orthopaedic specialist as I suspected a knee ligament/cartilage problem due to my sporting history. As a result I had an MRI scan on my left knee in early May.

In the meantime further visits to my GP surgery followed due to the growing inflammation around my knee, the uncontrollable sweating episodes, the loss of muscle tone in my calf and thigh due to my restricted mobility and the total ineffectiveness of the prescribed pain killers, (which at the final stage was diclofenac sodium, tramadol and Fentanyl Skin Patches taken in conjunction with each other with no pain relief whatsoever! ).

The orthopaedic surgeon upon viewing the MRI results stated that \"I had a tumour or an infection in my distal (lower) femur and that I would have to have a further urgent NHS funded MRI over the whole area\".

2 extremely anxious weeks passed and I had not had the urgent MRI when I was admitted as en emergency patient due to a high fever and the most unbelievable pain in my left leg.

Numerous tests later and I was diagnosed with chronic femoral osteomyelitis as a result of an unexplained Staphylococcus infection. My CRP count was in excess of 460 at this stage and my recollection of this period is very patchy as a result of the blood infection. I underwent 3 subsequent surgeries in the next week consisting of having a window cut into my femur and having debridement and washing/flushing of the affected areas as well as the use of systemically and locally applied antibiotics needed to eradicate the infection.

I was in hospital for a total of 3.5 weeks and left with an external caliper and crutches to be used as I am 100% non weight bearing on my left leg due to the femoral window. A further 6 week course of antibiotics at home saw my blood results return to normal levels.

So far my general health has improved and initial twice weekly and now monthly follow ups with the surgical team, including x-rays and blood tests are the norm. I continue with daily home physio exercises to improve flexibility in the knee joint and to exercise my muscles in the left leg which have deteriorated drastically due to me being non weight bearing.

However, the window in my femur is regrowing but how long it will take to regrow completely is the 64 million dollar question?

Has anyone any experience of the time the bone regrowth may take? Also has anyone in a similar position applied for Disability Living Allowance and any other applicable benefits?

Good luck and best wishes to anyone who is suffering/has suffered from this dreadful condition.[/img]

0 likes, 10 replies

10 Replies

  • luke96824
    luke96824 nige035

    Posted

    Nige035 I hope you're still active on your account!

    I got diagnosed with the same left distal femur chronic osteomyelitis 9 weeks & 5 days ago to be precise after experiencing similar symptoms and a CRP of 390(!). I'm still none weight bearing and it has been 9 weeks since surgery. My surgeon just keeps saying 'it will grow back' but won't say when. In the meantime I'm just getting more frustrated as there's a limit to how much physio one can do in terms of rebuild before you really need to be weight bearing to progress further; but I have no idea when I'm going to be able to. Surgeon is being very vague! If you could send me any info on how much bone you had removed, how long it took to regrow, if you've had any recurrence of osteomyelitis, if you had to stay on antibiotics long term (my course is 12 weeks) I would be most grateful. I'm 27, no history of medical conditions, fit an well, been completely gob smacked by this entire thing! Hope to hear back soon. Luke

    • Susie4016
      Susie4016 luke96824

      Posted

      Hi Luke,

      I can't answer any of your questions, but I am so sorry for what you are going through.  I was on heavy antibiotics for 2 months which didn't clear my infection, so my infectious specialist is now trying steriods (my jaw).  This is a terrible disease and there isn't nearly enough research or knowledge regarding osteomyelitis.

    • nige035
      nige035 luke96824

      Posted

      Hi luke,  Sorry to hear of your condition and can fully appreciate both your frustration at the vagueness of your surgeons predictions as to the bone regrowth and your need to be more proactive in your recovery. Firstly I am pleased to say that I have had no further reoccurrence of the condition and returned to work and an increasingly normal life after 18 months. As to the bone regrowth question I'm afraid that my 'window'  had still not regrown fully 18 months after my surgery. The last X-ray I had did show that the bone had filled approx 20-25% but I was told it was likely that this would be as good as I could expect.  I was a lot older than you though luke,  so hopefully your ability to regrow the bone will be a lot better than mine. There was significant growth on the opposite side to the window which my surgeon said would help to compensate for the weakness due to the bone loss. I was on antibiotics for 6 weeks and had antibiotic rods inserted into my femur after my 3rd operation to wash with hydrogen peroxide and debride the infected area. I found swimming to be a real help for me physically and mentally,  to be rid of the caliper and crutches and feel 'normal'  couldn't be valued highly enough,  even if being brought out of he pool by the cradle was slightly embarrassing ☺

      I was weight bearing after approximately a year, and cannot stress enough the need to follow the physios advice regarding exercise and flexibility. The teams advice was to avoid sports such as rugby and skiing,  but I am able to run and exercise pretty much as normal as any 50+ year old wants to!

      All the very best

      Nige

         

    • luke96824
      luke96824 nige035

      Posted

      Hi Nige

      Thanks so much for coming back to me & I am pleased to hear you're now fit and well. 

      I have been fortunate enough to only have 2 operations to date, first was an arthroscopic wash out, the second was a full debridement and removal of circa 2x2cm worth of rotten bone.

      Infection wise (fingers crossed) the operation looks to have been successful. However the location the bone was removed is apparently the most weight bearing part of the femur and as such the surgeon is being really cautious with the NWB. After 7 weeks the hole was still 22mm wide albeit showing fragments of healing. My next appointment is in 4 weeks time. Each time the surgeon fills me with optimism that it will grow back come the next appointment, but I'm worried it's going to be another knock in 4 weeks time!

      Just some other questions if you don't mind:

      - how long were you off work for? How long did it take you to get back to full time? 

      - did you feel tired a lot post hospital? 

      - how long was it before you went down to one crutch?

      - how long before you drove a car again (I'm currently borrowing a friends automatic)?

      - do you still have follow up appointments? 

      Sorry for all of the questions. There is so little information specific to this specific type

      of infection and bone regrowth I just have to ask!!

      Luke 

    • luke96824
      luke96824

      Posted

      Ps yes I'm going swimming too. Getting changed at poolside isn't particularlj enjoyable but worth it when I get in!! 
    • nige035
      nige035 luke96824

      Posted

      No problem Luke,  I was away from work for 32 weeks and then returned on restrictions for a further 7 months. This was due to a good employer who created a role for me as I was due to go on benefits only,  zero pay!  Thinking back I was on 1 crutch after the 32 we period.

      - did you feel tired a lot post hospital?

      I  was completely knackered mate, I had to have several blood transfusions too as I had septicaemia due to the misdiagnosis. 

      - how long before you drove a car again (I'm currently borrowing a friends automatic)? 

       

      I was driving after about 6 months. Managed to get a blue badge for about 6 months due to my limited mobility after an assessment. 

      - do you still have follow up appointments? 

      I had appointments for 18 months, always x-rays and blood work,  then when I returned to work full time I was discharged from my consultant, but with guidelines about getting in touch with him directly if I had any issues of a similar nature. 

      I have a few pictures of my x-rays I can send you if you can pass your email address to me? 

      Keep positive mate,  information about the illness is so poor, but patience is a key thing as my wife who is a nurse told me many times! if you're anything like me I would have rushed my recovery and she kept me on schedule without any relapses due to doing to much. 

      All the best 

    • luke96824
      luke96824 nige035

      Posted

      Unbelievably helpful post that Nige.

      From my end I'm particularly fortunate I got admitted to hospital when I did, and quite frankly I think without my work private health policy it may have been much longer before I did as my GP wasn't really interested and just to me to go to physio and rest!!! Once my knee had swollen up I had a sample taken and MRI within 4 days, and then 7 days later I was admitted to Hospital. Turns out the dull ache I'd felt on a night for the previous 18 months was the St. Aureus bacteria eating away my femur

      from the inside !

      Suppose my only question and for the benefit of anyone else reading this post would be how much bone did you have removed and at what rate did it grow back

      I.e. 2mm a week for example?

      Thanks so much for your responses Nige, helped no end! 

      Luke

    • luke96824
      luke96824

      Posted

      Ps yes I'm just like you in respect of wanting to push the recovery, I've been trying to convince the surgeon to let me walk properly since the moment I could raise my left leg again and bend it + 60 degrees!

      Which reminds me, did you get your full range of motion back? 

  • Susie4016
    Susie4016 nige035

    Posted

    Hi Luke,

    I can't answer any of your questions either, but I am so sorry for what both you and Luke are going through.  The pain of osteomyelitis is not like any other pain I have felt in my life.  I wish there were more experts who could help.  

  • jeannette1209
    jeannette1209 nige035

    Posted

    I'm just reading you post and I'm fearful for my son, as he contracted it while staying in the NICU. Same symptoms, same instances of treatment you stated. I wanted to just reply to your ? About assistance. You can also apply for state SSI because your disability is preventing you from earning a living. The funds come from your social security. Not sure how long you can qualify but totally worth looking into. Good luck!
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