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

Hi there im 25 and have recently been told i have Osteomyelitis in my left forearm. Never had it before although i did cut my finger quite deeply at work (i clean after students so kitchens can be very dirty places, lots of bacterie i guess) i spent 4 days in hosp on IV anti biotics and 6 weeks later im sat at work still taking oral. I have 0 pain 0 swelling and full mobility of my arm again. But i am still being referred to a specialist and im hoing crazy with worry

Youre not alone ive been awake through heart surgery, and no pain compares to osteomyelitis! Hope you feel better soon. Read my post ive put up. I feel really alone talking helps so much.

Hi, I've had Cronic Difuse Sclarosing Osteomyelitis for more than half my life. I was first diagnosed with something else before the doctor did a biopsy and took it with him to a medical conference in Singaore. At the time I was told I was the fifth known person in Australia to have it in my jaw. I like you also had the debulk done and had the drainage tube. I had to do exercises with my "Therobite" to open my jaw after the surgery. It used to be so bad that my Mum would crush Panadol tablets up and mix it with honey and feed it to me on a knife blade because I couldn't fit a tablet in my mouth. I'm almost 22 myself and am still getting flare ups... Mostly at night but sometimes at work if I'm on the phone a lot. I've just found out that my specialist is overseas and my not be returning to Australia so I now have to find another one which won't be easy! I agree with you about the weather, my jaw always plays up more in winter although cold water and alcohol don't seem to effect it. Have you found that the debulking has reduced the pain or even at least minimised the amount of times you get pain? I was told a jaw reconstruction was an option for me after I stopped growing. Would be good to hear back from you, it's hard to explain the pain to people who don't have it.

Hi osteomyelitisarmboy thank you for getting in touch. You are the first person I have spoken to who has osteomylitus! That is good news that you are not having any more pain in swelling. Hopefully your condition will be acute and not chronic osteomylitus. They are probably keeping you on the tablets to ensure that the infection has completley gone- I wouldn't worry until you know more. It is good they are keeping you on them!

It is so scary that you have been through open heart surgery and osteomylitus is worse- this really puts the pain into perspective I have told my family about your comments on this as it is really hard for others to understand what pain you are going through when it is an undescrible pain!!

I have read your post and understand that you are worried about a scan/x ray that you have recently had. All of my scans show an area which is large/white and almost clouded. This is due to me having chronic osteomylitus though as I have had it for so long- when are you next seeing your consultant you could ask if it is likely if your osteomylitus is chronic and if they feel it would come back. I have periods of time (months) in which my osteomylitus is fine and then it can flare up out of no where (again due to this being chronic).

I have done a lot of research on osteomylitus and the research that I have done shows that it is much more treatable in the arm or a limb so fingers crossed it can be treated for you and for it not to return!

My osteomylitus is returning more so because it is under my chin/jaw bone and this is the area my consultant could not remove in surgery due to operating internally.

How are you feeling now? Any more swelling/pain?

Hope you are well

Hi Kirsty thank you so much for replying and getting in touch it made my day when I recieved an email saying you had posted as I can really relate to you.

I do not know of anyone in England who has osteomylitus in the jaw and neither does my consultant- he always takes my case to regional meetings and nobody there knows anything either- it really is very rare!

Did the debulk surgery help you? I feel it has helped me a lot the swelling is nowhere near as severe as it used to be and I don't think that I have as many flare ups as I used to so it has helped me a great deal- just not enough!

I had exactly the same issues with my jaw I could not open it and also had to do excercises but they did not work until the infection and swelling had gone down.

I have had many experiences the same as you - I used to have to have soluble painkillers as I could not open my mouth- I used to have my bite measured regularly as I often could not open my mouth more than a centimetre.

I find I get flare ups when I don't sleep and at night my flare ups are often worse like yourself. I often get them at work if I feel stressed. Are there any other factors that you have found start a flare up? Its nice to know I am not going insane and cold weather sets your flare ups off too!

If you don't mind me asking is your current consultant part of the maxi facial department? Mine is and also specialises in oral surgery- hope this helps in some way. Also I wonder if you could get in touch with your consultant some way and ask if he can refer you to someone he knows who is aware of osteomylitus or if he can recommend anyone?

An update for you on my case- I went to see my consultant just under a week ago- I have only had one major flare up this year and have only been admitted to hospital once (which is good for me as I was admitted four times last year). My consultant said to me last week that once I have stopped my orthodontic treatment (I have a brace - nothing to do with my jaw) he wants me to see him as he is thinking of debulking my jaw bone again as he has newer and smaller tools now which he thinks may be able to get the bone under my jaw bone. I discussed a jaw reconstruction with him as I have read up on this before. He said that it is a major operation which would leave me with a big scare as he would have to peel back a lot of the skin. He also said that he has done similar operations on other patients and it has led to further chronic problems in the future so he wasnt sure about this.

I have found that the anti biotics Metrodizonal and Clindamycin work well for me and when I take them together when I was in hospital this year I was given them through IV and this helped reduce the swelling. This time I was on oral morphine which did not touch the pain but the anti biotics helped overall.

Did your debulk operation consist of operating inside or outiside of the face? Mine was internally and I still have a lot of added bone underneath my jaw bone which he could not get to. I am really concious of it and dont like my picture taken as I feel you can see it more on photographs and on a reflection. It is the right side of my jaw, where is yours? Can you see the swelling like mine? Does your face get a lot more swollen with a flare up mine does? Also how long do your flare ups normally last and do u take any anti biotics when a flare up happens?

Sorry for all of the questions I am just overwhelmed that someone feels the same as me! Hope you are well and you are right it is hard for someone to understand when they have not experienced it! I often feel lonely and like one of a kind!

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Hi, I know exactly how you feel, I knew there were others out there with Osteomylitus but I’ve never spoken to anyone before. It’s comforting to read what you’ve gone through and know that I’m not alone. Apparently all of the other cases in Australia (4 other cases known of when I was diagnosed in 2001) were females, however I’ve read online that it’s more commonly found in men. I have also read that it is more common to get it in the lower jaw, which mine is (left side). Is yours lower or upper?

I think the debulk helped me a lot although I’ve only had one debulk in 11 years. Mum told me she wrote down the month (September 2000)  which is when I first started getting pain, I would get pain every night within half an hour or so of going to bed. We thought it might have been a tooth ache so I went to a dentist who took X rays and then referred me to my specialist Dr. Anthony Oliver who is an Oral and Maxillofacial Surgeon. He did the biopsy within a couple of days of meeting me and I was diagnosed with two other things before settling on Osteomylitus. I can’t remember exactly how much time was in between the biopsy and the debulk but I think it was about a year before they did it. My jaw kept locking up and it was affecting my talking, eating, sleeping and school. After the surgery I couldn’t talk and would get people’s attention by clicking my fingers. I also had the drainage tube in the middle of my neck. They did the debulk internally so I don’t have any visible scars apart from where the tube was. When I run my tongue along the outside of my mouth I can feel the scar. Two weeks after my operation I went on school camp and had a photo taken of me, I look as if I have a ball shoved in my mouth. My face was really puffy and I remember it feeling very heavy. As I’ve gotten older I’ve found that it doesn’t flare up as much and I don’t have the same swelling or locking issues as I once did. Sometimes I can go three months without having any pain which is great – I almost forget I have it!

We’re at the end of our Winter over here and this one has been particularly bad for me. My jaw is flaring up at the moment and has been since the start of this week. A couple of weeks ago it flared up for three weeks straight. I was going to work tired and cranky from lack of sleep. It was waking me up at least once a night but some nights it got up to three times in a night. I’m not sure how long your pain usually lasts for but mine seems to take around half an hour to an hour before my painkillers kick in. I’ve been taking 1mg of Prednisone and 10mg of Mobilis for years now (I can’t remember how long exactly). The Prednisone is a steroid and the Mobilis is an anti inflammatory. I don’t honestly believe they help me at all, with or without the drugs I still have flare ups and they don’t seem to be any more frequent when I don’t take the tablets. I’m getting to the stage where I am seriously doubting that it will just disappear one day. My Doctor hoped that it would phase out by the time I had stopped growing which obviously hasn’t happened. I have a Doctor’s appointment on Monday with my normal GP to see if she can refer me to another Oral and Maxillofacial Surgeon. I’ve contacted the office of my first one and he has been in Denmark since the start of the year and they don’t know if he is coming back. I’m on a list of people to call if he returns to Australia but I just can’t wait in case he doesn’t come back. I was seeing him quite a bit at the start of all of this and then over the years it just became a “see me on a as need basis”. The last time I saw him was about 2 years ago. I’ve got my CAT scan X rays to take with me on Monday and I am going to request another CAT scan so we can compare the sizing from the scan taken in 2006 to now.  I have started thinking about getting another debulk in the hope that it might put off the pain even more.

That’s interesting what you said about the jaw reconstruction, my Doctor said that might be an option for me later in life but didn’t consider it while I was still growing. I knew it would be a major operation with a lot of down time for recovery but never thought about it causing more issues down the track. I’ll write down the antibiotics that your taking and ask my GP about it, maybe she can put me on them or something similar?

To answer your question about being self conscious – yes when I was younger and when it was a lot more noticeable I would cover it with my hair and would hate tying my hair up. These days I’m not too worried about it, I guess that’s because I am use to it now. People don’t really notice the difference unless I tell them about it and then they look at me front on and then they can see it. I think it does get more noticeably swollen when I am having flare ups but I think I’m the only one that can tell. It was a lot worse when I was younger and you really could tell my good days from the bad. Does yours get noticeably swollen or is it noticeable all the time?

I’ve never been admitted to hospital for the pain I’ve always just put up with it. I know this is bad but when it gets really sore I grind my teeth – it helps it momentarily. I also have a wheat bag which I heat up in the microwave for about 2-3 minutes which I find can help it too. Maybe you could try one of them if you don’t already have one? My Mum and I also had a theory that the flare ups could be linked with “that time of the month” but I’m beginning to think that it isn’t the case anymore. I also wanted to ask if you had any surgery or dental work done prior to you getting Osteomylitus? I keep reading that Osteomylitus in the jaw is caused by an infection during surgery or dental work on the mouth. I had teeth removed in surgery when I was about 7 and I wonder if this is how I got it. Apparently I bit the dentist on the finger too much when he tried to remove some teeth in the dental chair so decided it was safer for both of us to do it while I was asleep....maybe this is my karma for biting the dentist???

You’re not alone anymore

               

 

 

Hi, I've sent you a really long reply and it said it has to be approved by the site, I hope it comes through soon

Hi. I waited for the what seemed like the longest week of my life for Birmingham Orthapedic hospital ring. Then finally they did and a nice lady told me its NOT a tumor ( :D ) and its definitely infection. I also dont need a bone biopsy and to see my consultant at next appntmnt (tomorrow in fact) so ill know more tomorrow im hoping for either stay on ANti bios or i can come off them. I sometimes feel very slight ache in left arm but not enough to bother me. I know im not the only one with this condition and although the pain was like the wrath of God, i sympathise with yours and Kirstys stories. I dont know about you two but it makes it alot better to talk to people who understand? Ill let u know more when i see doc in morning. I prayed it wasnt a tumour and it wasnt so now im praying my arms clearing up (not very religious until this condition but i will say one for you guys too)

Mike

H yeh kirsty is correct the hot wheat bags where great at releiving my pain short term

Hi I just read your post,very interesting,I feel for you I really do. As I have Osteomyelitis in my lower left jaw,they think it was from when I had tooth problems,as Iv'e had the two teeth removed from the area where the Osteomyelitis is. It all started about a year to a year in a half ago Iv'e been to dental hospital had a biopsy from inside my jaw and one from the outside of my jaw,I have a little scar but it's not such a big deal it cleared up nicely,anyway that's not the issue.Iv'e been on antibiotics and pain killers ever since I was diagnosed with the infection,and it does clear up but then it comes back I also don't sleep I can't remember the last time I had a decent night sleep with out being woken up with the pain,I just wish it would go for some reason after they did the biopsy I had a swelling that wasn't there before and I still have it,and the inside of my jaw is swollen,you know when you have your jaw numbed by your dentist if you have a filling or a tooth out,and the place he puts the needle right in the back of your jaw,it's there where it hurts so much. I sometimes wounder if the antibiotics really are working for me,I'm due to go back to the dental hospital again in October this year 2012,Iv'e been to that place so many times I should take my bed there and sleep there..ha ha........and they say it can take time every time I go there that is all they really say,I so don't want an operation but if I do need one then so be it. I'm also a smoker for my sins they say smoking has a big effect on the healing process,as the smoke effects the oxygen. But as you said in your post you talked about the treatment you had Hyperbaric treatment but you said it didn't work,so I'm thinking me giving up smoking is it really going to have such a good effect,I really don't know. You are not alone believe me your not...anyway that's all I wanted to say and share with you for now...peace out.