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

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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

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  • Posted

    I am hoping Mike will reply. My daughter, age 19, got osteomyelitis in her lower jaw from a wisdom tooth extraction almost a year ago. It was diagnosed because the doctor went back in to clear out any infection due toswelling and pain and found a hole in her jaw. She was on antibiotics for 3 months and MRIs showed no signs of infection so we stopped the antibiotic. She still has pain though that never completely goes away and it sometimes flares up for a few days at a time. We are told this is probably nerve pain but I'm a little worried that there still could be infection. Can you tell me why a nuclear bone scan was used and whether MRIs had been used previously and detected no sign of infection?
    • Posted

      Hi dear ,did you get an answer ? How is your daughter doing? I have a similar problem but in my upper jaw

      Thank you in advance

      Lana

  • Posted

    I mean "Michael"
  • Posted

    Hi i know you wanted the other Michael but thought i'd try and help. The swelling may indicate some infection still in there i went 2 months on anti biotics and no symptoms but it never cleared up, so i stopped the antibiotics and my arm ballooned again and i was back at square one. Go to doctor ASAP...

    Update: im now back at work since January after 8 months off work. I have a biiiiiig scar down my arm but oh well that cant be helped. The good news is im signed off by doctor and he has given me the all clear!! Though it may seem impossible, the end is there for all of us and hopefully one day, like me, you can put all this behind you. Ill keep in touch anyway i wont abandon you guys just because im clear of osteomyelitis! Bless you all. Mike

  • Posted

    Hi Shar,

    Michael here.

    There are 2 types of nuclear bone scans for osteo

    Gallium scan shows active bacterial infection - you must be off antibiotics for 7-10 days for it to show active infection though.

    Technetium scan shows bone turnover where bone is "hot" due to the bone trying to heal itself for some reason. Not diagnostic by itself but in your daughters case would be as good as. Don't need to be off antibiotics for this though.

    I would say your daughter still has active infection. I was on antibiotics for 2 1/2 years (it was a bad case though) and now I have no symptoms, no pain and no unusual feeling post succesful treatment. That is when you know it's gone.

    A bone biopsy is another option.

    Please let me know if you have any other questions

    Michael

    • Posted

      Michael , please l would like to ask you more question how an I reach you ?

      Lana

      Or please if you can find me in FB Sveta Cher

  • Posted

    Oh and I never had an MRI. It may not show anything other than degraded bone though. Much like a CT scan or even a simple Xray. Once bone has been eaten away by the bacteria by approx 30% (very round number) or so it will show up on these scans as a darker area- this darker area is dead bone and needs to be removed. Nuclear bone scans do not have this limitation.

    Biopsy is still the gold standard. But the scans are a good start.

    Demand that they be done. Move on to a new oral surg if they don't cooperate.

  • Posted

    Thanks for your replies Mike and Michael. I will try to get her to a doctor who will do a nuclear bone scan. The oral surgeon we were seeing feels confident that the there is no infection due to the MRIs so I will have to find someone else. Any suggestions for doctors in the NYC or Boston areas?

    Thanks again,

    Sharon

  • Posted

    Omg!!! I have just been diagnosed with the same problem!! Only my left lower side!! I am also 5 months pregnant, so I get no relief sad I'm in constant pain 24/7.

    I also feel like a monster sad I have a 10 month old baby that I have a very hard time caring for. Please send me some coping advice sad

    • Posted

      Hello Tara-

      I know this is an old post but wanted a follow up with you! I have a 6 yr old and a 17 month old and am trying to figure out if I have a bone infection too in my lower jaw- hope all is better!

      Alison

  • Posted

    So sorry to hear that Tara, my heart really goes out to you. I have not experienced the pain myself but have watched my daughter go through it and wish more than anything that it was me and not her. Have you tried anything topical? We had a little bit of luck with aspercream and a capsaicin cream (made from hot peppers, so be careful because it really burns if you put on too much). Hope it helps!

    Sharon

  • Posted

    Just reading some posts while I wait for my X-rays to come out. Briefly... till I get home- I was diagnosed with osteomyelitis in my right tibia back in 2011 after a decade of problems. Had op to remove the sepsis and bad bone... It looks like its back. I live in Australia and am quite devastated at the thought of that pain returning and the post op remmittion sad

    It is nice to know I'm not allone

    Cheers

    Emma

  • Posted

    Gosh, how awful for you all. All those anti biotics and steroids and painkillers.

    Have any of you tried acupuncture for pain relief? It can be brilliant.

    Tissue salts can help with neuralgia type pain. Look up NEW ERA.

    Also anyone on long term anti B's needs to take acidophilus for good gut flora too and eat plenty of plain yogurt with pre and pro biotics.

    Have any of you problems with thrush, candida etc as would not be at all surprised with so much anti biotics.

    Good luck to you all and would be very interested if you can reply about any alternative treatments tried

  • Posted

    Ok so had a little time to let everything sink in now....

    I'm trying to decide on how to tell my story, short run down or extended directors cut :D

    Bit of both maybe.

    So when I was 3 I got neutropenia (super low immune system) and suffered from severe abdominal pain, diarrhea, fibromyalgia, migraines, halucinations, depression from that age all the way through highschool. When I was 16 I started getting super duper pain in my right leg that would send me to the ground if I was walking... Doc diagnosis- growing pains.... I attribute that diagnosis to everyday of suffering I've had since and one day I will confront this doctor but moving right along.

    In my 20s the hallucinations, cognitive problems got much worse. I was doing my honors in industrial chemistry and just had to stop. I began having troubles reading and my memory was collapsing. Then I started to have severe neurological turns that we're diagnosed as epilepsy, but when the EEGs stopped showing the previous activity, the neurologist decided that my problem was psychological. Having a chronic undiagnosed illness makes you grow a tough skin due to all the specialists and doctors that tell you that you just have a psychological problem and to see a shrink. My shrink who is wonderful has always had faith in my mental capability and has made sure ive got second opinions. Anyhoo, during these"turns" my body would become heavy, with muscle weakness turning to total paralysis. I would sometimes go unconscious and lose the ability to understand English (very short version). Scary stuff yet no one knew what was going on. One emergency doc told my mum to stop taking care of me because I just had mental problems.............

    I also suffered from severe fatigue and joint pain and fibromyalgia. I was unable to walk or even do things like brush my hair or hold a cup. It was the bone scan from my rheumie that found the osteomyelitis. That's right, in the bone that had growing pains.

    My most wonderful osteo oncologist operated, cleared out the destroyed bone and the ball of sepsis that was poisoning my body and brain. The hallucinations and the weird turns and the extreme pain all stopped! I still had fibromyalgia but that was nothing in comparison.

    The biopsy grew nothing. No bacteria. But overall who cared it was over... Right?

    That was 2 years ago. Since, my abdominal problems have escalated. Forgot to mention before that 7 years ago I had my appendix out but it was fine, what wasn't fine was an abdominal cavity full of adhesions, inflammation and mucous.

    Endoscopies and colonoscopy show nothing except severe ibs. Never knew ibs wakes you in the middle of the night with the runs and blood. Going to see my oncologists brother who is a gastro for a second opinion.

    Now that unmistakable leg pain is back and my specialist is thinking nonbacterial osteomyelitis. I'm having an MRI this weekend and seeing a general physician who will put it all together. I'm thinking I have CRMO with crohns. I feel like I have another lesion in my jaw that has been there since I was a kid. I remember that my jaw used to lock up for days and my doc trying to prise it open. It aches like a mofo along with my pelvis and lower back. Why are most docs so useless? My physio is a master but even he can't fix my hips.

    I've missed out a few things....but I've covered a lot.

    To the previous message, "new era" therapy has done nothing for me.

    The only thing that is guaranteed to work is a laugh and a glass of wine (only wine sometimes cause I get terrible tummy problems from alcohol :D)

  • Posted

    Oh forgot to mention that I had a beautiful little girl last year... Pregnancy was awful I was so sick, I had placenta previa and an "irritable uterus" which gave me labor pains without the labor for months. My sinuses cracked up and I had a pilonidal cyst at 26 weeks which was operated on because the cyst was considered more dangerous to the baby than the operation. Luckily codeine doesn't cross to the baby because that cyst has been the most painful thing I've ever endured and I've sustained a lot of pain in my life! Meanwhile my ear nose and throat specialist can't figure out what's wrong with my sinuses.... They have been inflamed and swollen for over a year now. Woot! Woot!

    So if anyone needs advise, or help researching their problem ill be happy to help!

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