Jaw osteomyelitis

Thanks for the prayers. I will pray for you also. I'm 48 and this all started from having surgery and thankfully that was how my diagnosis came so quick.

I also had to quit work because of the Picc Line and still going 2 hours a day to the hyperbaric oxygen chamber. Now that the Picc Line was taken out two weeks ago the jaw pain has returned strong.

I called my doctor today to get an appointment for a follow up. The original nuclear Scan was inconclusive so they are making me an appointment the same day for what ever the follow up Scan is to an inconclusive Nuclear scan. I also had blood work that showed a high inflammation level.

It is terrible to know that others are also suffering with this disease yet it does bring some comfort to know I'm not alone. Friends and family suffer the consequences of me having this disease and the surgeries that come with it but they don't truly understand the frustration.

Thanks for replying Jamie30365.

Hi Rebecca, 

I am so sorry to read about your experiences due to this persistent and painful condition osteomyelitis.  My daughter has been suffering since the age of 15, due to a an orthodontic issue which then followed infection which her dentist initially failed to,pick up on until the apparent swelling in her lower mandible suggested an emergency appointment to the Maxillofacial Dept.  We are in Scotland and she was sent a hospital in the Monklands area.

The team at her hospital acted immediately on her first debridement followed by intravenous antibiotics and followed up by oral. We were lucky enough to get a reprieve from June 2014 until Dec 2015.   Thereafter the severe pain came back in full force. Her consultant suggested a second debridement in Feb 2016 .  He also carried out a reconturing of her jaw as the previous infection had left her face asymmetrical. 

During this operation the nerve leading to her lower lip was compromised and the team did aim to repair the nerve there and then.  I cannot fault the maxillofacial team as they did there ultimate best to reshape my daughter' s jaw.

The time in theatre and the wide opening of the jaw, caused my daughter severe discomfort as well as the numbness, burning and tingling sensation in her lip and lower area.  She remained in hospital for two weeks on intravenous drugs followed by an out-patient lesson on IV .  My daughter attends university 3 hours away from home, she had to have an IV line and use it each night after uni.  She had 6 weeks of Ceftriaxone, oral doxycycline and Clindimycin.  My daughter struggled through uni, she was constantly exhausted as she was borderline anemic. The infection and antibiotics compromised her blood count. 

Unfortunately, the pain and constant discomfort never ceased this time.  The pain continued on and off until the July.  After x rays and CT scans the bone was not looking good and the soft tissue was inflamed.

The next option was Steriods to slow down the immune system.  The reasoning for this was that something was triggering the immune system!! Thankfully, for the first time in a long time my daughter was pain free!  Her whole demeaner was happy and lighter.  The constant battle of fighting pain and working through it can take its toll on your whole outlook. 

Today was a good day! We had an X-ray which showed that the bone looked less porous and more dense.  The inflammation was down, there is more sensation in my daughter's lip.  At times, if my daughter is overtired, stress or it is cold then her jaw starts to niggle.  She ensures she has plenty sleep, she tries to eat a healthy diet ( low sugar). 

We are not under any illusion that the infection has gone for good, but while things are better , my daughter is so appreciative of a pain free chapter and is embracing life.  

For all suffers of this chronic condition please keep sharing all your stories, it has helped me as a parent through some dark days.  I just live in hope that perhaps there will be some progress in treatments. 

Thank you Rebecca for sharing

 

I am sorry to hear your daughter going through this at such a young age.

My second nuke scan showed that my jaw is in the healing process yet still hurts to touch and is tingling. It is scary to note that this disease can and usually is reaccuring.

I am just taking it one day at a time.

I am still suffering major fatigue and I literally sleep 16 hours a day.

In a week and a half I will have my different surgery for sleep apnea where they will only use sutures instead of a suspension device.

Then I will know if my fatigue is infection or lack of sleep related.

I am praying for your daughter.

Is everything ok with your daughter now ! I'm in the U.K. And can't get anyone to listen to me with my problems

Hi Alison,

At the moment my daughter is fine. She had a little inflammation in her jaw and her glands were swollen, she took some doxycycline and paracetamol and it calmed down.  She tends to get flare ups when stressed. She had uni exams and driving test..  

She also tries to eat healthy and uses spirulina. Microalgaes seem to help the immune system. 

Alison whom have you contracted regarding your condition?  We were referred an emergency appointment to our local hospital through our dentist, as the pain, discomfort and swelling was becoming unbearable.  Originally our dentist referred us to the Glasgow Dental Hospital , which had a 10 week waiting list.  I insisted that my daughter could not suffer another day never mind 10 weeks.  We went to the maxillofacial dept that day, she was assessed, x-rayed and taken within a week for debridement.  Osteomyelitis is considered a rare condition,  have you contracted your GP or Dentist? 

Let me me know if I can help you with any other information. I can then contact you directly. 

 

Glad to hear she's improving . I am getting nowhere with dentist doctors or dental hospital! I'm in agony 24/7 had a tooth out in December then got a dry socket and wouldn't heal so they scrapped the bone twice and antibiotics!! My gums are always red and swollen and my jawbone is inflammed and the pain I have from underneath the socket is terrible I could rip my jawbone out with the pain . I could rip my gum open and everytime i say I need the socket opening and cleaning out they say the socket is healed and there won't be anything wrong !! I've had an MRI scan which shows enhancements in the area !!but cant tell me what they are !!im banging my head against a wall and it's killing me the pain I could cry all the time . I'm not getting anywhere with anyone . Appreciate any help x

Hi Alison,

When you say they scrapped the bone and gave you antibiotics , was this the dentist? You have not been seen in hospital and had the debridement procedure??? Followed by intravenous antibiotics ??? If they gave you antibiotics Amoxocillin then it won't do any good.

Have you had an abscess or eruption in your jaw???

I know how bad the pain escalates and the frustration of this condition , if I can help I will.

The problem appears to be that suffers are not diagnosed until it is too late. If you have acute osteomyelitis you are in with a chance of catching it with antibiotics. Mr Sood is the name of my daughter's consultant.

Feel free to get in touch! I will check out how I can give you an email address .

Look after yourself !

Max

My dentist went in and scrapped the bone as it was not healing and then a month later it still wasn't healing but they said there was no infection ! At the dental hospital on the 20th Feb they took a tissue sample that came back with foreign body reaction and it started to heal after that but then I've had constant swelling on my jawbone and pain and all the dental hospital keep saying is it's nerve related pain and have discharged me !! I've paid to see two private oral surgeons and one said he could see the swelling and has never been back in touch and the other one said he could feel the lump on my jawbone and sent me to my dentist sayin he thought it was an absess which it never had been . I can't get anyone to open up the socket and look they all say the socket has healed and if I had a bone infection the socket wouldn't heal !! No one listening to me ! I decided on Saturday to put myself on clindamycin as they gave me this prescription a while ago that I didn't use .

I appreciate any help as I'm banging my head against a wall , thanks alison

Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

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Hi Alison,

I have sent you a private message. So press on the envelope to get my email.

My daughter has a tooth removed as it had not cemented after orthodontic treatment ( that's a whole other story), however, bacteria had got in underneath the loose tooth. The tooth was perfect, but we had to be rid of infection underneath. All cleared up for a few weeks then the Pain came back. The gum looked perfectly fine. The dentist xrayed with their equipment, it looked fine, but their X-ray machine did not show the mandible (jaw bone) . The infection had moved down further in to her jaw bone. The pain was excruciating. My daughter did develop an abscess on her jaw bone. She was also very tired all the time , she was constantly on ibroprofen and paracetamol. You may have infection in a different area. But usually osteomyelitis comes with malaise and feeling unwell . The other major issue causing immense pain is the damage to nerves in this area especially if it is wisdom teeth, this is more common than osteomyelitis. Although, I am not sure about the gum inflammation with nerve damage?? A lot of your symptoms sound familiar.

Max

How were you finally diagnosed? Bone scan or mri/ct? 

Hi- you mentioned you were misdiagnosed for 1 1/2 yrs- how did you get finally diagnosed? An X-ray? I have had pain in my upper jaw and to add to it I had a tooth removed and now I have more damn pain but it looks good they say from outside. I just want an answer to my issues and am losing my mind over it.

I had tooth 12 removed 2 months ago which is by the nose. Ever since extraction it has been throbbing above the site. My mouth looks fine but the bone on face hurts in that area. Getting referred nose pain. I feel so angry because no one is listening to me when I say I don’t think the bone healed properly. It terrifies me. Had MRI - right after extraction which did not show anything. It’s ridiculous these flippin dr’s dismiss it or and at least do the better tests to diagnose like the nuclear bone scan or gallium scan. Plus how is it we know things take a while to show up on a scan but drs don’t? Why why why is it so hard to believe the bone didn’t heal correctly? Ok I am ranting and could go on and on and on

I'm nowhere ! No one will help no one believes I have osteomyelitis. It's me that thinks I've got it but I'm banging my head against a wall as no one wants to help

That's why we end up with Osteomyelitis because after we have a surgery like me I got staph infection MRSA in the incision after a simple back surgery I had. I took oral antibiotics for that and the incision healed up nicely but every time I would come off the antibiotics my body would get so sore I couldn't hardly walk, I would run fever. And my back Drs office would call me in antibiotics and I would get better. This went on for almost a year. My pain treatment Dr. that prescribed my pain medications would listen to me cry and I told her I never felt good that I felt like I had cancer or something. Well she listened and set me up an MRI and that's when we found out I had Osteomyelitis... My pain treatment Dr. explained to me how serious this was and sent me to a Infectious disease Dr. and she put me on a pic line for 12 weeks. So they did an MRI at the end of the 12 weeks and then removed the pic line it was Dec 18th 2016. I started getting really sick right after Christmas I ran fever nauseous and my walking was going down hill fast. So within a couple of days I had to call an ambulance because I could not walk!! By the time it was all over I ended up having surgery to scrape the infection off the bone and I had an abscess removed. I had 8 spinal fusions done along with rods etc. They never told me that I may be paralyzed after the surgery but the Dr. told my family. So when I woke up and I couldn't move my legs hardly it was scary. If we would have went any longer than we did I would be paralyzed!! And it took begging and crying to different Drs. to get anyone to take me seriously!! And if you let it go to long there's no telling what could happen! So you need to be firm when talking with your Drs and tell them if you do have Osteomyelitis time can make the difference between being paralyzed or amputation etc... So they need to take you serious and get you some help if they can't!!! I wish you all the luck and I will be praying for you......

Can you give an update?