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chronic osteomyelitis amputated foot 33yr old woman

Posted , 7 users are following.

jennyjuniper
jennyjuniper

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?

Itd be great to hear from anyone whose been through this? I'm told its really rare but when I googled my symptoms on the NHS website the advice said to get a test for infection. Something I was never offered in 5 years of presenting with the same symptoms.

2 likes, 14 replies

14 Replies

  • osteomyelitisarmboy
    osteomyelitisarmboy jennyjuniper

    Posted

    Hi Jenny. I'm sorry to hear you have had a difficult time as of late. I think its a lottery on the diagnosis, i myself was diagnosed with tendonitis then cellulitis then a Consultant swooped in shouting "osteomyelitis!" And i had a lot of surgery and medication i got better (read my post 25 year old osteomyelitis in forearm)

    Amputation i''ve discovered is quite common with this disease especially as it's so difficult to clean out the joints.

    Sorry i can't talk more at this second because i'm at work, but i'm here for you just message me and i'll always get back to you.

    Mike

    • jennyjuniper
      jennyjuniper osteomyelitisarmboy

      Posted

      Thanks Mark so much for your reply it's nice to know other people have experienced this too. I am being referred in march to w group of specialists as apparently this is unusual and mostly children get osteomyelitis so maybe they will come up with something I'm trying to stay positive. Did u find any pain medications that worked? I've tried most things but nothing seems to help. Thanks again smile jenny
    • osteomyelitisarmboy
      osteomyelitisarmboy jennyjuniper

      Posted

      It's true children are susceptible to osteomyelitis. To be honest i also found the pain unbearable. I'm also allergic to morphine :-/

      I was on tramadol and a herb plant, begins with the letter C... I know it's wrong of me to point this out but that plant was 100x better than oramorph AND tramadol together!

      I believe i contracted this infection from a 1cm cut on my finger it can come from anywhere. My consultant said determining where it came from is pointless, it could be anything, treating it is all that matters and you too will be out of the woods eventually, i know it.

      Mike

    • jennyjuniper
      jennyjuniper osteomyelitisarmboy

      Posted

      Hi Mike thanks for your reply smile I went to the GP again today I'm struggling to cope at work (I do nights hence the odd times I reply) who put me back on morphine...I'm seriously considering your suggestion of a certain plant but I wouldn't know where to get any from!

      I've also just started gabapentin, which may or may not work I'm not too sure yet. I'm just mainly worried because no-one seems in a hurry to operate - they've told me I will need either an amputation or possibly several surgeries to TRY and repair the ankle using healthy bone - but they arent keen on this option. If I need an amputation then it must be a risk having an infected limb but I havent got a meeting with the surgeons until March rolleyes plus I feel crappy again. I'm having my bloods redone but last time they showed okay (ish) yet i felt terrible so I dont know that its an accurate test. The pain is really getting me down. I'm switching to a vegan plant based diet and quitting smoking so I'm hoping that will help. It gives me hope that your all recovered and back at work, I feel like its going to be a long road but my work are supportive which is nice. Money wise did you get any support when off sick? I get sick pay but its about half my regular wage so I'm hoping there might be something to top it up, unlikely though i guess. Thanks again jenny

  • donna68767
    donna68767 jennyjuniper

    Posted

    Hi, I had surgery 18 months ago, acdf on c5-6 in my neck, I have been in chronic pain since. A PET scan revealed the infection back in April last year. I have had two antibiotic treatments since, the last being 3 months iv with a nurse coming to my home everyday. The latest MRI shows no change since October 2013 so I am now waiting for another PET scan to see if the infection is still in the bones. I can only pray it has gone but the pain I am still in tells me different. Obviously I don't have the option of amputation as it is in my neck, I have no idea what my future holds, I have two children. It has saddened me to read your story as I was ignored like you when I kept complaining of my symptoms, our outlooks could be very different had we been treated initially from the symptoms starting. Rare is a word I am sick of hearing, their way of getting out of being negligent is by constantly saying how RARE osteomyelitis is but when you look on sites and forums like this one there are many of us suffering from this. Sorry you are suffering so much, hope you get some sort of relief soon xxx                                                                              
    • jennyjuniper
      jennyjuniper donna68767

      Posted

      Hi Donna I'm so sorry your going through this too I really feel for you. How are you managing with your kids? I struggle to do anything active with mine which is really upsetting me. I love to go walking and my little girl is just getting old enough for iceskating and stomps in the lake district. Instead we sit at home every weekend and I feel cruel. I do take her for short day trips but it exhausts me and I cant drive anymore due to the pain. I had IV treatment too in hospital when they removed the bone and drained the cysts and afterwards at home. Did it make you really sick? I felt awful. I just think they take so long to do anything! the doctors etc I mean, like now I know I'm still infected and I think its getting worse - its a dull achy pain like my bones and muscles are constantly tensed and I can't relax them - when I do too much it turns into a throbbing agony. Is your pain similar? I'm wondering if what I'm feeling is the infecton eating away at my bones. I'm not currently on any antibiotics and I don;t know why. My bloods look okay ish (low white cell count but at the high rang of normal) but I know how I feel and they ignored me last time and look whats happened. I told them I want to be back on antibiotics today atleast until I get the operation and they just said I needed another blood test rolleyes

      I asked the GP to explain my condition and she said she couldnt, that I had to talk to the specialist - I dont even have a specialist! I'm meeting lots of clinicians in March but as of now I am still under the orthopoedic doctor as its located in my foot - surely I should be under an infection specialist though? Who do you see?

      thankyou for your reply and I really hope things are okay infection wise for you - I think we know our own bodies and we know when something is wrong. I still don't understand why neither of us was given a test for infection and why they seem to be dragging their feet in terms of treatment. Do you find certain things make it flare up? mine is worse in cold weather and if I have a drink - which I dont because of pain meds anyway now. I asked my GP to explain what osteomyelitis is exactly and why mine is chronic and not acute and she said she couldnt, that she didnt know what it was sad

      wishing you all the best jenny x

  • donna68767
    donna68767 jennyjuniper

    Posted

    Hi Jenny, my pain is exactly the same and the more I try to do the worse the pain, throbbing, burning and aching. At the moment my meds are pregabilin, solphodol, slow release tramadol, duloxotine and morphine, I am still always in pain so I don't know how I would feel without them. I have tried the plant medication and it helps better than anything else. My girls are a little older but I still struggle to do things with them, the youngest needs a trip to the Trafford Centre for her friends birthday presents at the weekend and I am dreading it but can't keep saying no. I have to wear my neck brace and people just stare obviously wondering what is wrong with me and it's very uncomfortable. My pain is also travelling up to my head and like you I feel it's the infection eating away, it's scary isn't it. I personnally think you should still be on antibiotics until a decision has been made on what to do next. I have been told if my scan results aren't good I will need more surgery and possibly a lifetime of antibiotics to keep it away, trying not to think about that at the moment. With regard to chronic and acute osteomyelitis, it is chronic when there has been a delay in diagnosing and more difficult to rid of. Acute can usually be treated as it is caught early enough, we are the unlucky ones with medical proffessional not listening to us about how our bodies are feeling and the infection ending up in a chronic state. Hope you feel better knowing it's not only you in this situation xxx
    • jennyjuniper
      jennyjuniper donna68767

      Posted

      Oh Hon I really feel for you it's just awful having to live like that sad I had a supportive boot for 6months when it was really bad I know what u mean about people staring it was like a giant sodding moon boot I clonked. I think I should be on antibiotics too so back to Docs I just don't trust em to do anything eight now. Yes it is comforting to know I'm not alone in it and it's good to finally have a diagnosis after 6yrs. It's all swollen today n I feel crappy I'm working nights and my boss is coming to see me this afternoon to assess my ability to work rolleyes I really don't want to sit at home doing nothing I'd much rather be working. Do u manage towork? Are u in the UK? I'm in calderdale jx

  • donna68767
    donna68767 jennyjuniper

    Posted

    Hi, sorry you are feeling bad today and good luck with the boss. I haven't worked since my surgery in August 2013 and I get so bored and fed up but because my problem affects my left side my arm is very weak so even on a rare good day there isn't much I can do, family and friends come round to visit. I didn't mention earlier about when I was on the antibiotics. Well, I was so poorly and lost a lot of weight even though the hospital had me on Ensure build up drinks and all sorts of vitamins. For 3 months I was on iv and oral antibiotics combined so you can imagine this on top of all the other meds, I then got c diff which made me very poorly and they only wanted to give me more antibiotics but the strength of the ones I was already on I couldn't take anymore. I have lost all faith in the people treating me and I am loosing patience with how long it takes to get to the next treatment they think of. When I eventually get my next PET scan my surgeon has informed me that he is circulating it to other neurosurgeons across the county to see if they have any ideas as to where to go next, you can see why I have no faith in them, they just tell me they have never dealt with cervical osteomyelitis before as it is so RARE. I only live inbetween Liverpool and Manchester so we are quite close, usually I have only spoken to people in America. I hope you are feeling brighter soon and you get some progress on the antibiotic front, take care xxx
    • jennyjuniper
      jennyjuniper donna68767

      Posted

      thanks hon, they don't seem to be in a rush with me either I asked them why I wasnt on antibiotics and they say because my EFA (I think!) levels are low it shows infection is not flaring up at the moment but I had my bloods Jan 16th so they could have gone up since then rolleyes

      Plus you'd think they'd rather be safe than sorry but given previous history maybe not! I just feel like no-one wants to treat me, probably because its so RARE lol

      Good luck with everything I wish you all the best do stay in touch and we can share experiences, two heads are better than one and all that...fancy being so close I've only spoke to Mike on here and one other person in USA as well xx

  • jennyjuniper
    jennyjuniper

    Posted

    oh yes, also i st alot of weight too Donna, about 3 stone in 3 years. I also had terrible night sweats and mood swings - all signs of infection but at the time i thought it was just me adjusting to working nights rolleyes
  • ROBIN1964
    ROBIN1964 jennyjuniper

    Posted

    Hi, over 3 years ago I had surgery on my ankle and then 3 mths later when I started working out at the gym I noticed I was having pain in the femur of the same leg.  I just thought I haven't worked out in awhile, I broke my ankle and a  bone in my foot and I had 2 surgeries right b/4 that, anyway I thought it was just normal.  The pain started getting really unbearable and when you don't have insurance (I got hurt at work, had the 1st surgery went back to work and when I went on vaccation and came back they had fired me.  They knew my 2nd surgery was coming up) because I lost my health insurance when I was fired, so when you have no insurance you kind of get ignored.  I went to the ER 3 times, saw family doc 2 times, and had x-rays and a MRI of the spine.  I was diagnosed with everything from bruised hip to siaticica.  Finally after a mth I started running a fever of 102 and my leg started looking like it was mottling.  Went back to the ER and they did a CT and saw a mass that was 22cm length, 14cm wide, and 5cm deep.  They told me they thought it was bone cancer and sent me to a teaching hospital where they finally dx me with osteomyelitis.  I have had 2 surgeries and 2 8 week courses of antibodics through a pic line.  My x-rays still shows chronic osteomyelitis.  I have pain from my hip/groin area all the way to my foot.  I can not stand on this leg for long periods of time without my leg and my foot swelling. 

    I don't have anyone to talk to about the pain I have because people just don't understand.

  • donaldb
    donaldb jennyjuniper

    Posted

    Hello Jenny my name is Donald Broadnax I'm 47 years old and I've been suffering with osteomylitis since 2005 I'm also a diabetic but due to my osteomylitis I've had one below the knee amputation and their toes amputated off of 1 foot I have an awesome dad cause my osteomylitis to run rampid in my foot I just recently had surgery to have infected bones removed and now I am on a regiment of IV antibiotics to try to kill it
  • leslie26372
    leslie26372 jennyjuniper

    Posted

    Hello Jenny. I have suffered from osteomyelitis since the age of 13 im now 60. It actually killed me and I was brought back for a second show. I woke one summer morning and my left leg hurt a little. Within 8 hours my knee swelled to 4 times its normal size. I was in the worse pain of my life. I have never had such pain. My father rushed me to the er. He was told I had junior arthritis and to take me home to call my doctor. He refused and demanded they contact my doctor and have me admitted. If he had not done this I would not be here today. The last thing I recall was being taken to a room. I slipped into a coma for over 35 days. I not only had osteomyelitis but I had gotten blood poisoning from it that put me in a coma.I had like so many others went through operation after operation I stopped counting after a dozen. In my early twenties they want to take off my leg from above the knee. My leg from the knee down to the ankle was infected. I did not do this. I gave up seeing the doctors and suffered the pain and filled the holes in my leg with gauze. I did this for over 35 years. I was unable to pass a phiscial so I could not get a job. I did go into business myself and did very well. I was unable to stand long or walk very far. I again gave up went to a doctor to have my leg cut off I could not take it anymore. I was referenced to a bone specialist. He said there was and operation that could get it undercontrol and it was experimental at the time. I don't belive it is anymore what they did was called a muscle flap. They removed the muscle from the calf of my leg and wrapped my bone in it increaseing the blood flow to my bones. They did scrap the bone and cleaned it out also. I was in the hospital for six weeks on antibiotics and was unable to walk for almost 4 months. I still suffer from pain and from walking funny all my life I also have back problems. I do not have any drainage anymore and it seems the bone is no longer being destroyed. I don't know if this would work for others and it does not fix that awful aching pain but I no longer have boils on my leg. I can't say that I miss them. It is a hard thing to deal with many don't understand the pain. Even the ones who should like the doctors. It is an awful thing to have and may God bless us all for having such a cross to bare. I hope this is helpful. Good luck. See if such an operation can help you.
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