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
stcey42430 Osteomyelitisinjaw
Posted
I've had osteomyelitis in my jaw for 3 years the pain is awful it's changed my life and me and I've finally had a second biopsy hopefully get the results at the end of march to find out more I'm under a different hospital as the hospital I was under for over 2 years pulled my teeth out on the left side where the osteomyelitis is then he threw my biopsy away and just kept treating me not good! I'm sick of taking antibiotics and painkillers I should be taking co amoxiclav and cylndamycin regularly but I try to only have them when I'm desperate. My face constantly swells up I don't have much sleep or energy lack of sleep makes me worse and cold weather I always have to be warm and I have a hot water bottle wich sometimes helps. I feel like nobody really knows what to do and there just hoping for the right solution the antibiotics make me worse sometimes as I took pictures when I was constantly taking them for a few months non stop I feel like it's taken over my life I'm so miserable and moody and it's hard for people around me as nobody will understand unless they have the same. I can't explain the pain apart from it's really bad and probably the worse pain I've gone threw all I can say is just take each day as it comes and hopefully will get somewhere in the end
melindasmakeup stcey42430
Posted
Hang in there Stacey! I'm in the same boat as you. I'm taking each day as it comes and trying to distract myself from the reality of what this is. I am also not the most fun to be around when the pain is this bad. I feel myself almost glaring at certain people that truly don't understand how much pain I'm in. No one should ever have to explain how much pain they are in. People need to just trust us and believe that we are suffering and to be sensitive to us at the least. I hate going to work when I'm in pain but it does help distract me for a little while. I usually go home after a couple hours because of the fatigue of what I'm going through. I really hope we all will find a treatment that actually brings us relief. Until then, I'm keeping you all in my prayers. I pray for endurance, strength, and rest!
choward1991 melindasmakeup
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Sounds like we are all in same boat! What antibiotics did they use for you guys? I've been on & off in past and then the pic line. I'm back on Oral clindamyacin 300mg 4 times a day. It seems like it's not working this time. I have excruciating deep bone pain as well. The pain killers don't seem to be helping mouth/jaw pain though. The neurologist added gabapentun last week and it does not help so far but it's started at 300 mg and I can work up from there. What happened that you didn't want to take? The CT I had at Cedars in mid February shows thinning of the maxilla I believe they said. I go next week to Oral Dr to review and they are also doing a PET scan next week. You are right about the pain! I had to stop working and with all the symptoms I'm home most days and have been bed ridden for days at times. I had great relief for 3 weeks after the bone debridement but then went back downhill. Do you see an ID Dr in Inland Empire?
PTP071 choward1991
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When I took the Gabapentin, I was put on the extended release version that's 600 mg. Maybe it was too high of a dose to start with, but the first day I took it I felt like I had been hit with a tranquilizer dart. I don't know how else to describe it.
After it kicked in, I spent the first hour sitting on the couch feeling like the earth was tilted and I was going to fall over if I moved. After that, everything was moving in slow motion for hours and I couldn't even articulate my thoughts verbally or through text. It seriously took me 5 minutes to text 3 sentences because I was losing track of what I was trying to say. And apparently I was repeating the same things for a few days straight and had no recollection of ever having saying them. I'd also wake up the next morning, 17 hours after having taken my medication, and it would take me at least 20 minutes to actually get up because the world sped back up and I was still moving in slow motion. The final straw was when I hadn't even taken my medication yet one day and I was driving and I got completely lost on one of the main streets in my city - a city I've lived in my whole life! Right then I decided that this medication wasn't for me. I'm not sensitive to medication and the side effects for me were really scary. That and my pain levels were rising the whole time because it was bone pain, not nerve pain.
I'm not currently seeing an ID doctor. We don't even know what stage I'm in or what's causing it, so as we know more we'll go from there. My surgeon told me to get ready to battle and we're gonna throw everything at this. My infection is right up against the adjacent molar and he thinks it may be infected. He said he's all for preserving teeth and I'm like, "Get it out! I'll get a new one some day!" Maybe reading up on OM has prepared me for how bad it can get, and a single tooth is a small price to pay in my opinion.
I actually know someone personally who had OM of the jaw after a terribly botched extraction and bone graft procedure and my previous surgeon (who wasn't listening to me) was the guy who came in and saved his jaw. He got it under control with three surgeries and oral antibiotics and that is a miracle. Too bad I won't be going back to him but my new surgeon has some pretty good credentials himself so I think I'm in really good hands.
jess0548 stcey42430
Posted
Wow, it's sounds like I'm going through the exact same thing. I've had 2 surgeries of my left maxilla with mixed oral flora findings. That has caused me 3 years of fighting with over 20 docotors to get some help. I've done 1 round of IV antibiotics and hyperbaric and felt great during treatment, only to have everything return later. My current ENT is wonderful and says it has to be osteomyelitis. I'm awaiting another bone scan before I'm referred out of town to another experienced surgeon. He keeps mentioning a possible plate due to the loss of bone. For three years, unless I'm on antibiotic, I'm completely miserable with pain, nausea, sweats, chills, and on and off fevers. I would not wish this on my worst enemy. Hugs to all who have had to endure this nonstop pulsing, pressure, pain!
karenna61864 Osteomyelitisinjaw
Posted
Hi Everyone,
I have had Osteomyelitis of the left mandible since 2001 and have been almost completely pain free for 16 months. Although it was caused by a tooth extraction, my white blood cell count was never elevated and antibiotics never seemed to help. Doctors were still convinced that it was an infection, and maybe it was. 3 surgeries, hypebarric oxegyn treatment, 2 PICC lines may have helped a bit, but I was still in extreme pain. A doctor at the Mayo Clinic prescribed prednisone (10 mg once a day), and it worked to control the pain and inflammation when I had flare ups. I was on and off it for years through college, but it was not a good long term solution.
Four years ago, I moved to Portland and started seeing a rheumatologist at Oregon Health and Science University. He did a bunch of research and we tried a variety of biologics (ex. Enbrel) without much help. What eventually worked was a bisphosphonate called Pamidronate (an injection once a month at the hospital). I was on it for 6 months. It helped almost immediately and the affects lasted for 16 months so far. I'm hoping the pain never returns, but am grateful for every day without it. There is a risk with Pamidronate, which is expecially scary for those of us who have osteo of the jaw... one of the very rare side effects is jaw osteonecrosis (death of the jaw bone). I consulted with a few doctors before taking it, and really my options were to try more biologics, get surgery, or try the Pamidronate (which could result in surgery to remove the dead bone tissue if I experienced the rare side effect).
I hope this information helps someone with a similar story.
pat88053 karenna61864
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megan82465 karenna61864
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PTP071 Osteomyelitisinjaw
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Just a little update:
I was scheduled for my 'sequestrectomy for osteomyelitis' today and I had my surgery.
I don't know if he removed any sequestra but he removed the granulation tissue and debrided quite a bit of bone. He didn't see any pus inside so that's a really good sign. Either it's not too bad or the Clindamycin is working really well. I was given another round of Clindamycin but he doesn't feel additional antibiotics are necessary right now.
He's still hoping the opposing molar is salvageable, but we'll see.
We're hoping a new clot will form and stay put. The site was packed with a packing strip soaked in alvogyl and stitched closed. I'll have it changed out and checked on every three days. It's basically now being treated like a dry socket. He even mentioned that it was like a non-healing dry socket.
Here's to hoping this finally starts healing and the infection is taken care of...
choward1991 PTP071
Posted
How are you feeling post op? I had 2nd surgery in April. Maxilla is still feeling better but gums still don't appear to look normal and get swelling and pain there along with all my other terrible symptons but was curious. They debrided bone during both surgeries and there is sclerosing now. I hope yours isn't the same.
PTP071 choward1991
Posted
I've been really good since my surgery! I started having a lot of pain and we discovered that the molar next to the extraction site was suffering from irreversible pulputis from the trauma (not decay) and I had to have a root canal on it.
I had another CBCT scan done due to the pain that was in the area but it showed new one was generating and it was a beautiful sight.
I still think about it from time to time, but I'm pretty confident that the nightmare is over.
PTP071
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NurseColleen Osteomyelitisinjaw
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nurseotr NurseColleen
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Thank you, thank you, thank you! I'm a Surgery RN who had almost the exact duplicate series of treatments and surgeries. I was fortunate that my Oral Reconstructive Surgeon did everything through my mouth. But I didn't have to have a bone graft as my bone grew back completely on it's own. I have never been sorry I had it removed! My Surgeon is Dr. Joel Berger in San Diego. He's the best over here. I've tried to discuss excision of the infected bone before but nobody was interested. I wish I had done mine sooner.
JillKA NurseColleen
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JillKA nurseotr
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