22 years old With Osteomyelitis in my jaw- 8 years of pain -

Posted , 68 users are following.

It is quite difficult to start writing about something which has been such a big part of my life for 8 years. I will start from the beginning...

It started when I was 14 out of nowhere. The dentist I saw said I had a displaced jaw bone and this was the reason for my pain. I will always remember him asking if I had a boyfriend 'as kissing would make it worse?!' I did not. So at this stage I thought that this was the reason for my pain - a displaced jaw bone. I was given 600mg of Iboprufen and took this every day alongside paracetomal (8 tablets a day).

Over the next year the pain got particularly worse and my face swelled like a balloon. At the age of 15 I did not sleep at all. I had constant pain and was taking as much painkillers as I possibly could. The swelling got that bad on the right side of my face I felt like a monster. I grew my hair to as long as I could and would constantly cover my face with my long hair and a scarf.

Over the summer it would be increasingly difficult to cover my face without a scarf and when I was 15 I could no longer take this pain from my 'displaced jaw'. My mum and dad took me to A&E. Instantly the doctors here realised something was not right and I was admitted. Many tests were done to see what the problem was. I was discharged from hospital with painkillers and had to wait for my results.

I went to see one doctor for my results who I had seen whilst in A&E she specialised in cancer but luckily I was told by her I did not have this.

I had tests such as blood tests, bone scans, MRI scans, CT scans and a biopsy which told me that I had Osteomyelitis in my right lower jaw bone. I was referred to a very good consultant in the 'maxfax' department. He said that the steps that would be taken would be firstly an operation which would be done internally to shave away the acess bone and would hopefully relieve me of some pain. Whilst waiting for the operation I was given the antibiotic Amoxycillin.

I had the operation when I had just turned 16 I think. By this point I had not had a full night sleep for a year and a half. This was very frustrating as I was trying to live a normal life as possible. I was trying to be a good student at high school and not get behind with work. I was in excrutiatiing pain- I constantly felt like I was being viciously stabbed in the right side of my jaw. This pain often went up into my ear and below my eye. Often I was in too much pain to attend school, luckily I had one amazing teacher there that always sent work home and constantly reassured me that everything would be fine. I was particularly worried as this was happening whilst I was preparing for my GCSE's.

After the operation my face was badly bruised and I had very bad swelling. This was expected though as the operation wasn't plain and simple. One part of my face looked as though I had a tennis ball in it. I also had drains coming from underneath my chin that was draining access blood. I recovered in hospital for around 10 days and was given oral antibiotics to take home.

I saw my consultant regularly. Once the swelling had gone down from the operation- the swelling that was normally there from my osteomylitus wasn't as bad at the side of my jaw as this had been shaved away. Swelling of the bone was still there though. My consultant suggested I have hyperbaric treatment every day for 6 weeks. I was just waiting for a space to become available.

A space came available for the hyperbaric treatment - I remember being at school , I was taken out of my class to be told this treatment was going to start. I cried. A mixture of relief that the pain and this horrible swelling might eventually go. Again I missed a lot of school as I went every day to hull for this treatment. I have sworn to myself I would never have this treatment again. Hyperbaric treatment helps to get oxygen to the jaw so there is a better blood supply to the bone. A lot of cancer patients attended this treatment also. I had to enter a tank every day- put a oxygen mask over my head - something I can only describe as something astronauts would wear! For around two hours I was In this tank with a nurse and around 6 other patients- the pressure in the tank is changed and you have to make your ears pop like you would do on an aeroplane before the pressure goes below a certain number- a weird treatment but I can see the logic in it. I don't think the treatment really worked for me to be honest and I wouldn't do it again- but it may work well for others.

For the next couple of years I went on to do my a levels. I was on long term anti biotics as the osteomylitus had not gone away. I found Amoxycillin did not work for me so I was put on long term penicillin whilst on painkillers. I found that stress aggravated my jaw bone and I had episodes where my jaw would swell up more. At this point I had always said to my consultant that it may be my wisdom teeth were making my jaw worse. I was put to sleep and I had these removed from my right side- my pain did not stop so unfortunately this was not a cause of my osteomyelitis.

After my A levels I decided to take a year out and work full time at the job I was currently working part time at. At this point I was 18-19- during this time as I was older I could take stronger pain killers. I am intolerant to codeine so my options were ibuprofen and paracetomals or dicloflenac when this didn't work I would take tramadol which would have horrible side effects. When these did not control my pain my only option would be to go to A&E and be admitted to have stronger pain killers and anti biotics through an IV.

When I was 19 I was admitted to hospital because I was in so much pain. My consultant wasn't around at the hospital in this occasion so people he worked with decided they would operate as they wanted to drain my swelling at the side of my face of fluid as the swelling was getting uncreasingly worse. I have forgotten to mention that most of the time the opening of my mouth is restricted due to the swelling in and around my bone. This is another reason for operating. When they operated there was not a lot of fluid. The IV antibiotics took my pain and swelling done as well as a lot of morphine! And this episode seemed to be over with.

That's what there seems to be these episodes where my face swells and which then leads to a lot of pain. Some times I go months without these flare ups. From the age 19.5 - 21 I had minor flare ups which were bare able.

At 19 I started the studying for my 3 year course for my degree- I didn't want this horrible infection to take over my life. During this time I was given a mouth guard to wear at night to make sure that grinding my teeth is not an aggravating factor, and I also had root canal treatment to make sure I had nerves in my teeth and that a tooth was not dead and the cause of the osteomylitus. All of my teeth are fine.

It is now December 2011 I am 22. I am in the 3rd and final of my university degree. This year I have had many episodes/flare ups of my osteomyelitis - even though I always have it- my face can flare up and swell more and the pain is worse and becomes unbearable. This year I have been admitted into hospital twice.

First in April- the reason for this flare up I believe to be because of stress with work from university as I had 4 exams in a week so lots of intense studying. I had IV of antibiotics and Painkillers in hospital which seemed to work. I was in hospital for 4 days.

August of this year I was admitted for the second time. This was a very different experience for me and not a pleasant one. My consultant was not informed that I was admitted and I had doctors which new nothing about my Illness working on me. I was in for 8 days. I was not happy and did not feel any better from me entering hospital until the time I left. Normally when I am given metrodisonal and clindamycin through IV this reduces the swelling this did not happen and the swelling started to go to the side of my throat.

After seeing my consultant he suggested that we operate again as the anti biotics are not working as effectively. I really want to finish my degree at uni so I am trying to simply power through the pain. My consultant is fantastic and we work together as he rightly says nobody knows my condition as much as me. So I am delaying another operation at the minute. The operation Wil not guarantee that the osteomyelitis will go completely and this time he would have to operate externally which will leave me with a big scar. This is the reason for him not wanting to operate before with me being young he does not want to leave me with a big scar.

At the minute I am in the middle of another flare up it is close to Christmas and I do not want to be in hospital again So I am trying to control the pain at home.

A few things I have forgot to mention: at one point my consultant explained to my mum the pain I was going through like having 10 abcesses under each tooth on the side of my face ( hopefully this will put the pain I go through in context)

Also factors I have found which make my osteomylitus flare ups worse:

Cold weather (the reason for my recent flare up)

The change in weather

Lack of sleep

Cold drinks

Alcohol assumption when I am having a flare up.

Finally, sorry if my story is a bit all over the place it is hard to remember everything that has happened in 8 years. Please anyone get in touch who have this condition maybe we can help each other?!

8 likes, 253 replies

253 Replies

Prev Next
  • Posted

    Iv been booked in to my local hospital to have a small debridement where the infection was. Doctor said he has cured me clinically but theres slight damage where the infection was so needs to clean it up. He idnt worried at all, he said its straightforward, pnly be in theatre about 60 mins and ill be fast asleep. I see pretty much everyone on here with Osteomyelitis has had surgery of some sort. Im very nervous (though i suppose thats normal) i cant leave it so i have to have it done. I just feel very nervous. Even though i know ill be fine and need it doing. Doc doesnt seem worried at all so why am i?

    Hope everyone is okay. Mike

  • Posted

    Hi everyone, firstly thats great it's not a tumor Mike! I know my Mum feared I had cancer before I was diagnosed. I guess I can't really say what the surgery will feel like for you but I know it hurt - a lot! But in saying that since I had the debulk in 2001 I haven't had the same swelling or pain issues so hopefully they get rid of it for you. I saw a new oral and maxillofacial surgeon on Tuesday. I had a CT scan done wednesday and go back in 2 weeks to talk about my options. He didn't seem to think that antibiotics would help me. He seemed to be leaning more towards me getting the infection through the blood stream rather than an infection of the bone through dental work. Hope everyone's sleeping okay, keep posting updates its good to know how everyone's going.
  • Posted

    Hi all,

    I have Chronic Osteomyelitis of the upper jaw(maxilla).

    I was diagnosed by nuclear bone scan.

    I have had it for 20 months or so.

    I have been on antibiotics for the last 19 months or so.

    Current antibiotics are levofloxacin and rifampicin. I have been on that combination for 17 months straight. Im on a very heavy dose too.

    I have tried pretty much all antibiotics that are used for osteomyelitis(About 15 different antibiotcs) and this combination is the most effective.

    I am getting slightly better over time and think the antibiotics will clear it eventually.. Dont know when though

    I am a 31 year male.

    Please let me know if you have any questions.

    Michael

    • Posted

      Hi Michael

      I'm 33 and have had osteomyelitis in my lower right jaw for over 16 years. They just diagnosed it in 2008 so I've been having jaw surgeries since then, about one per year with iv antibiotic treatments and oral antibiotics. I'm still having pain sad I'm actually up right now watching tv waiting for my painkiller to kick in. I don't get much sleep.

      Hope you're doing better!

      Healthy Wishes and warm regards,

      Melinda

    • Posted

      II sent you a private message, I am in the same age range and am going through the same thing you are currently trying to get a solid diagnosis!

      My infection is in the upper mandible/maxilla. I hope you're feeling better!

    • Posted

      Hi Michael ,how are you doing ? Can I ask you more questions about your diagnosis and treatment ?

      I have a problem for 3 years since dental procedure was performed wrongly . I am in pain 4 sinus surgeries plus feel bone pain I don't know what to do

    • Posted

      Hi I just saw your post. I have Chronic Osteomyelitis of the jaw too. Up fighting pain right now. Do u still have it?
    • Posted

      Yes I still have it. I'm currently swollen and in pain. Going to doc today to ask for a second opinion. He doesn't seem to know what else to do. I've had 5 surgeries and picc lines. But it's still hurting...

      how are you doing??

  • Posted

    Hi everyone,

    My name is Chris, I also too have suffered from osteomyelitis and although I no longe rhave it it has left me in severe pain and long term damage. I had it in my back/lower spine to be pricesie and it has eroded much of my spinal area.

    Although this was nearly 4 years ago and it has healed sufficiently enough for me to walk about it is still not 100% and i have had a spinal cord sitmulator, which is basically a battery sewn into my spine, which is for life.

    I have yet to meet anyone who has had or even heard of osteomyelitis so in a horrid way its nice to find some people on here who can share their experiences.

    I am sorry to hear of all your experiences, particularly osteomyelitisarmboy in the jaw. it would be nice if we could all help one another.

    One thing that has helped me a little although it is for nerve damage is something called pregabelin lyrica.

    I hope to chat and hear from you all.

    Chris

  • Posted

    Hi Chris, glad to hear from you. Sorry to hear about your condition and it still affects you. Ive heard alot of people can have lasting effects from this destructive disease.

    I myself went into hospital 3 weeks ago for 8 days (was originally overnight but my infection was quite bad) so i had three lots of surgery and IV antibiotics. Im now off work 12 weeks and on some harsh drugs (clindamycin and rifampicin) which dont make me feel too good. Rifampicin can cause C DIFF if im not careful too so im not out woods yet. It helps to talk to people as i feel im not alone. How old are you Chris if u dont mind me asking. Im 25. Call me Mike smile

  • Posted

    I am so sorry to hear how much pain and physical trauma you have had to go through. You have been very courageous and reported you story so well. I am a senior citizen in the U.S. that has had the same symptoms for many, many years and two small cases of osteomyelitis (elsewhere) and antibiotics.

    The problem in my jaw, which is severe was recently (finally!) diagnosed. It is a more unusual form of osteomyelitis that is sterile, called Chronic Recurrent Multifocal Osteomyelitis. Rather than an infection, it is considered an auto inflammatory/autoimmune disease. Treatment includes prednisone and sometimes Azithromycin.

    It is common in younger people and may be another form of osteomyelitis for some to consider.

  • Posted

    hey!

    so i just came across this today and for the first time ever thought i'd write back to something like this! similarily, I'm 23 now and was diagnosed with Osteomyelitis when I was 15. Before that it took them so so so long so figure out what was wrong!

    I used to surf and skate alot as a teenager so when i started getting severe pain in my leg it really upset me! I was always active and loved PE in school and it really ruined it all for me. I remember weeks turned into months and months turned into years where I would be slouched in front of the telly with ice packs on my leg and reaching for solpadeine. Once specialist first diagnosed me witha condition called Osgoodschlatters, a condition thats really common in teenagers that are active, its worth taking a look into actually. Basically rest is the only cure for this really, so i took a year out of living a normal life that year with no results!

    it wasnt until my mother decided to take me to her physiotherapist that anything began to happen! Might I add,at this stage, I too had began to miss alot of school and my motivation was just lost. This physiotherapist began to pull some strings and referred me to an ortho consultant. He too believed it was Osgoodschlatters and decided putting me in a full length leg cast for a month would help... i didnt make it to ten days the pain was that bad.

    I suppose at the age of 15, being told by the consultant that it was either a bone infection, cancer of the bone or something rare really did not help! That has always stuck with me.

    Then it all came together, bone scans, MRI, CT, numerous xrays. A bone biopsy which when culltured, proved it was an infection. By this time I was 16 I was hospitalised for 1 month receiving IV and oral AB's and underwent surgery to debride the bone!

    The antibiotics instantly worked and once I was allowed to weight bear it felt absolutely amazing to be able to walk with no pain!

    2 years later I had a flare up that lasted around a week then dissappeared after having no treatment, and very very rarely it hurts. At the moment, after years it is very sore again, but I would have to agree with you, the cold weather definitely plays a part. I'm sure of it.

    I do agree that awarenesson Osteomyelitis is far too limited. I didn't let it beat me and since then I've actually moved from Ireland to England and am half way through my Nursing degree. So I'm also a firm believer stress can be abig player too!

    I hope this reply does soembody good, because there is hope and we are definetely not alone! smile

  • Posted

    First ever online post. I saw this post through some random computer usage and thought my story may help. Just over ten years ago I had osteo. The dentist just gave me antibiotics and said it would go away. Everybody who experienced the pain knows how rough it is. One day I was hit in the face playing hockey and went to the emergency room. There they found the true problem. Which I guess I was lucky I got hit in the face because they said it would have killed me two weeks later. The surgery to clean my jaw went mostly well except for the flatline after surgery. The i.v. antibiotics killed my veins so they put a central venous catheder in my chest and every few days I went to a disease center for about three months. It's been ten years and im osteo free. I know that pain hurts so hopefully this could be applicable to anyone's case. Good luck
    • Posted

      Hi, I know you wrote your story a long time ago already but can you please tell me more about how did your osteomyelitis go await and what did the doctors do to cure you i would be much appreciated for more info thank you..
  • Posted

    hi there i had osteomyelitis when i was 4 years old and had septicaemia i spent nearly a year in great ormond street hospital i had it in my right hip im on tamadols for the pain im 34 this year

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.