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
Notty64 Osteomyelitisinjaw
Posted
Hi. I had my lower right wisdom tooth taken out in October '15 because of infections. This just made everything worse! Antibiotics failed to do anything and by March I had osteomyelitis. Two lots of debriding also failed to work. In May I heard a snap followed by excruciating pain. I went to the hospital where X-rays showed that within 3 weeks the infection had eaten through the front right angled part of the jaw. The snap was the brittle back of the jaw hence why my jaw was wobbly with an ever changing bite. I was kept in for emergency surgery when a titanium plate was fitted from my chin to the right angle, where a second plate went from there up to the joint. I was warned my jaws may be wired for 12 weeks and I might have an external fixator coming out of my jaw. Thankfully, neither happened. I stayed in for three weeks for IV antibiotics. I then had a PICC line fitted so I could continue the antibiotics at home. My consultant (Stephen Liggins) has been superb as have all the staff on the ward. The NHS has been excellent. Ive an appointment in a few weeks to see he things are going. The swelling has almost gone now. The nerves in my lower op, chin etc don't work so talking and eating are a bit tricky. Hopefully, they will start working in due course. I'm so sorry to read the stories of poor/inappropriate/wrong treatment. I hope things start to improve for you all.
hannah22624 Notty64
Posted
Hi - i know this was posted a long while ago so dont know that anybody will see this message, but i am so please to have come across this forum!
I am 21 years old and am actually a dental nurse! I had an impacted wisdom tooth removed in January of this year and the problems began after this. Following the minor surgery i got an infection called dry socket, unfortunately nobody would listen to me when i was adamant that i had it and therefore wasnt prescribed any antibiotics. Due to this the problems began, I had constant pain in my lower left mandible and my dentist put it down to me grinding my teeth. It wasn't until my bone started swelling massively between the back of my mouth down to the centre that people started to listen to me. It had been left for such a while that i actually ended up with a point in my mouth full of pus. I was referred to maxfax at my local hospital, i was tried on antibiotics (both orally and intravenously) but this did not work. I had blood tests, x-rays and an MRI scan before i was diagnosed with chronic osteomyelitis. I had my first operation around three months ago, and it was very quickly decided that this had failed and there was still a lot of necrotic bone, therefore i had a second op just four weeks later. None of this has helped me, I cant even begin to explain the constant pain to anybody and nobody seems to understand. I cant sleep properly, i cant eat properly, the pain radiates into my ear also so it feels like i have a constant ear infection. I have heard that pamidronate intravenous helps the pain a lot - has anybody else had this? I just dont know what else to do - im currently awaiting an ultrasound of my jaw and neck to again assess how bad it has become. The consultants at hospital are extremely good (i actually work with one of them), but they just dont know enough about the condition to know what to do for me. Only one of the consultants in the hospital has seen osteomyelitis of the jaw before and that was just the one case around 25 years ago! fortunately for that patient it was only acute osteomyelitis and was successfully treated after one operation. Unfortunately as mine went undiagnosed for such a time it became chronic. I havent actually been told by my consultants that they wont be able to get rid of it but from what i can see on this forum a lot of you feel as though it will never go? i honestly dont know what else to do i am trying to continue with work etc as normal but some days im in so much pain i dont even want to get out of bed. Paracetamol and ibuprofen have absolutely no effect on it anymore, tramadol works a little but it knocks me out for about 12 hours! has anybody else used anything different that is effective for pain relief? I have heard of a specialist named Peter Ayliffe that works at the Eastman hospital in London, i am considering trying to get a second opinion from him but im sure it wont be that easy! Sorry for the extremely long post but my story is just as long as some of yours!
melindasmakeup hannah22624
Posted
Hi Hannah! My story is almost identical as yours, been in and out of doctors offices and had many jaw surgeries but still have pain! I got a referral from my surgeon to see a new infectious disease dr for a second opinion. I hope I get some new advice/answers. I'm so depressed from this disease!
hannah22624 Osteomyelitisinjaw
Posted
Hi - i know this was posted a long while ago so dont know that anybody will see this message, but i am so please to have come across this forum!
I am 21 years old and am actually a dental nurse! I had an impacted wisdom tooth removed in January of this year and the problems began after this. Following the minor surgery i got an infection called dry socket, unfortunately nobody would listen to me when i was adamant that i had it and therefore wasnt prescribed any antibiotics. Due to this the problems began, I had constant pain in my lower left mandible and my dentist put it down to me grinding my teeth. It wasn't until my bone started swelling massively between the back of my mouth down to the centre that people started to listen to me. It had been left for such a while that i actually ended up with a point in my mouth full of pus. I was referred to maxfax at my local hospital, i was tried on antibiotics (both orally and intravenously) but this did not work. I had blood tests, x-rays and an MRI scan before i was diagnosed with chronic osteomyelitis. I had my first operation around three months ago, and it was very quickly decided that this had failed and there was still a lot of necrotic bone, therefore i had a second op just four weeks later. None of this has helped me, I cant even begin to explain the constant pain to anybody and nobody seems to understand. I cant sleep properly, i cant eat properly, the pain radiates into my ear also so it feels like i have a constant ear infection. I have heard that pamidronate intravenous helps the pain a lot - has anybody else had this? I just dont know what else to do - im currently awaiting an ultrasound of my jaw and neck to again assess how bad it has become. The consultants at hospital are extremely good (i actually work with one of them), but they just dont know enough about the condition to know what to do for me. Only one of the consultants in the hospital has seen osteomyelitis of the jaw before and that was just the one case around 25 years ago! fortunately for that patient it was only acute osteomyelitis and was successfully treated after one operation. Unfortunately as mine went undiagnosed for such a time it became chronic. I havent actually been told by my consultants that they wont be able to get rid of it but from what i can see on this forum a lot of you feel as though it will never go? i honestly dont know what else to do i am trying to continue with work etc as normal but some days im in so much pain i dont even want to get out of bed. Paracetamol and ibuprofen have absolutely no effect on it anymore, tramadol works a little but it knocks me out for about 12 hours! has anybody else used anything different that is effective for pain relief? I have heard of a specialist named Peter Ayliffe that works at the Eastman hospital in London, i am considering trying to get a second opinion from him but im sure it wont be that easy! Sorry for the extremely long post but my story is just as long as some of yours!
hannah22624 Osteomyelitisinjaw
Posted
Also - has anybody experienced severe fatigue and sweating profusely? Ever since these problems started i have been having severe hot flushes and have been sweating lots (only on my head/face&neck).
xxthisismelxx hannah22624
Posted
Yuuuup. Mine has been really bad. Feel like I'm going thru menopause.... but I'm to young for that. Constantly sweating, it sucks
hannah22624 xxthisismelxx
Posted
Exactly how I feel !! And I am only 21 so also to young. I'm having blood tests this Friday but feel like there isn't much point ! I don't understand why it is this happens though really. Possibly because of infection in the body I suppose ...
Notty64 hannah22624
Posted
Oh yes, fatigue and sweats. I was told it's because of the chronic infection that my body wass trying to deal with. I hadn't realised how crap I'd been feeling until the antibiotics started getting on top of the infection. Definitely not the menopause as I'm a bloke!!
My consultant did tell me that it is possible for the bone to start healing itself, but the plate will stay in for the rest of my life. The 3D CT was really interesting (in a perverse way!) and my jaw looks like the inside of a Crunchie bar.
I have a chronic pain condition so take lots of prescription drugs including morphine, but the pain in my jaw cut through all that. The IV antibiotics I was on were Tazocin (2 weeks in hospital) and Ceftriaxone (4 weeks at home through a PICC line). The hospital microbiologist recommended these after examining cultures grown from my infection.
I hope you get your osteomyelitis under control soon.
hannah22624 Notty64
Posted
I feel a little let down to be honest, it's getting to a point where I just feel as though nobody is helping me and that they've sort of just given up. The longest I was in hospital was after my first surgery and that was only for three days, would have been less if it weren't for the fact I got cellulitis in my arm because of the canula, they couldn't wait to get rid of me as needed my bed for somebody else ! Nobody has offered me a PICC line. I have had metronidazole intravenously and orally I have had metronidazole, clyndamycin and erythromycin. I am allergic to penicillin I should probably note. I don't think anyone really understands the pain osteomyelitis gives you and how much it affects day to day life. I'm just really fed up now and am just giving up myself really just trying to get on with it !
melindasmakeup hannah22624
Posted
Yes I get really hot waves that Coke over me, and I get sweaty. It's awful
melindasmakeup
Posted
Spelling "come" not Coke!
melindasmakeup hannah22624
Posted
Yes!! I get sweaty all the time! It comes in waves and I feel like someone turned the heater on! And I'm only 35. It's been this way for 16 years!
hannah22624 melindasmakeup
Posted
Sorry for the delayed reply i dont get notifications when my messages are replied to.
The hot flushes are getting worse and worse each day.
I was also diagnosed with a seperate problem around three weeks ago that can also cause hot flushes but am undergoing treatment for this and there has been no improvement in my hot flushes so for now i am putting it down to the OM. i hate them, i cant go anywhere or do anything without having one! I actually had a really good month with the OM - i almost forgot it had ever happened! But unfortunately i have had another really bad flare up - it started saturday and i have to say i have not missed the pain one bit!Â
melindasmakeup hannah22624
Posted
How terrible! Yes I understand the feeling. Hopefully your doctor will see that it could be the OM flaring up and do some X-rays or something! It's so weird how the pain will subside for a while and then boom! It's back. I hate when you feel like you're rid of it then it comes back with a vengeance. I've had good months too where I feel like I'm getting better then it will come back again and it makes me feel so down because I thought I was healing.
My doctor doesn't have any good answers for me so I'm going to get a second opinion and ask about the pain flaring up around my period and about the hot flashes.
crystal_31981 Osteomyelitisinjaw
Posted
I can't imagine the years of pain. My husband has suffered from jaw pain for six months now. He hasn't been diagnosed with osteomyelitis for he has not seen a doctor. He went to a chiropractor for maybe six weeks whom said it was tmj. I fear it is osteomyelitis. Everything I've read points to this. His symptoms:
Lack of jaw movement
Swelling
Intense pain
Feels like tearing when he falls asleep and the pain wakes him in excruciating agony
Can't eat
Can't sleep
He sits nonstop with ice/heat on his jaw, doing stretching exercise with handle of hairbrush in mouth
Everyone has tried to encourage him to seek medical treatment but he believes there's nothing that can be done for it.
I truly fear if its infection it will travel throughout his body and take his life.
Any advice to convince him this is a possibility that it is not just tmj but something serious?
hillary_1959 crystal_31981
Posted
Omg! Get him to an oral surgeon (or an ENT if you have better medical insurance).
I had my first of FOUR surgeries April 4. The 2nd surgery left the bone so thin that I ended up breaking it (OUUUUCCH!!!) I ended up with four three to four day hospital stays, a PICC line and a super strong antibiotic that I had to go to the infusion clinic EVERY DAY for SIX WEEKS. I'm telling you. Don't mess around with this. It's brutal!
My last surgery they finally had to cut a piece of bone from my hip and put it in my jaw. Along with that was a solid metal appliance that looked like a bike chain (same size too, maybe bigger). It was crazy!! It also cost $12,500. I'm finally on the mend, but I still have the metal on my teeth, should they need to rewire my jaw.
I've left out a lot of detail or this would be a book. The point I'm trying to make is GET HIM IN TO SEE SOMEONE!!! The longer you wait, the worse it'll be, and the cost will continue to go up. I guarantee it, especially if it's OM. I'm in debt around $35K. I've got Medicare, but the oral surgeon I started with doesn't take ins.
If he won't go on his own, trick him and make the appointment for him. I'm serious. Mine came out of nowhere. It started by a small amount of pus coming from my gums; there wasn't even an abscess formed yet. I went to a regular dentist to get the tooth pulled and that's when I found out just how much infection there was. Obviously, they recommended me to an oral surgeon and so my journey began.
The infection in him can take off like mine did. It was absolutely insane! I've had a myriad of health issues, but this has been beyond anything I could possibly imagine.
Feel free to ask me any questions. I get notifications on this thread, so I'll see it.
All my best to you and him!
Hillary :~}
ps.. Maybe Don't tell him everything I said. It might deter him even more from taking care of it.
hillary_1959 crystal_31981
Posted
maxine_44228 hillary_1959
Posted
My daughter is 18 and has osteomyelitis of the lower mandible. Â She has had 2 debridements to date. Â Currently she has been given Steriods to dampen down the immune system and lower the inflammation. Â There is talk of bio phosphates but after reading about them I would rather not go down that road. Â I am really interested to hear about your operation and bone replacement.Â
I do not see any resolve with this chronic condition I have  read about bio glass and jaw replacement. I really do not want my daughter facing years of this on-going severe pain.  Can you give us some information on this procedure and the recuperation time!  Also how evasive was the operation and are you ok now and pain free???Â
Than you for sharing your story it really is helpful
maxmill68
michele62869 crystal_31981
Posted
Hi Crystal, just reading your post and wondering what your husband ended up doing? Hopefully it was TMJ but I was curious to know if he got better or what treatment he ended up seeking. I have osteomyelitis of the jaw, center mandible. I had surgery just a little over 5 weeks ago with debridement of the infection and a bone graft inserted. All the dead crumbled bone was scraped out. Bone from a cadaver was added to my plasma and inserted back into my jaw in place of what was scraped out. I'm still healing and trying to manage the nerve pain that I hope/assume is regenerating and healing.