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
cate8 Osteomyelitisinjaw
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I'm 53 and was diagnosed with chronic (long-term), refractory (not responding to any antibiotics) osteomyelitis in my jaw bone when I was 37. I had been ill for years preceeding this and it all started when I was 8 years old and suffered a trauma to my chin (just where the chin indents/where roots of teeth sit). I was in and out of hospital to have the bone debrided and cleaned, followed by antibiotics. It would be fine for a couple of years and then flare up, prompting antibiotics, hospital visits, root canal treatments (twice on 4 bottom middle teeth)... and so the cycle went on. It just got worse and worse and my symptoms were malaise, sort of like ME. I looked ok, so people just thought I was a bore, so I stopped mentioning it but sometimes the pain and severity of symptoms were so bad ... it was the worst time of my life (pleurisy, pneumonia etc etc) but still had not received a diagnosis of osteomyelitis. One doctor prescribed anti depressants, which I never took because I knew it was a physical thing... there was pus coming out of my jaw bone when I pressed it! ....The worst symptoms were always just before my period, when the progesterone levels plummet. Years went by and by chance I saw a friend who said to get my dentist to refer me to the maxillo-facial professor. Within 3 weeks I had a radical resection of my jaw bone (all internal) and sent for hyperbaric oxygen, because I couldn't have any more antibiotics. Ever. Then a year after this when he was happy that the infection had gone, I had a bone graft to put in the hole in my jaw bone + more hyperbaric oxygen. Then a year after this when all had healed and was looking revascularised he drilled 2 titanium posts and then a prosthodontist made a prosthetic implant that resembled my 4 bottom front teeth, fixed them in place and I can honestly say that I have not even had a cold since or any kind of illness.
The corollary to all this is that it was the infection ie low grade septicaemia that was making me ill. Not depression (well yes physical depression in the sense of physically below par). I started running and looking after myself as I never ever want to be at the mercy of doctors and dentists not caring or listening or suggesting that it's all in my head! Being ill is pretty sapping, but it's 10 x worse when you feel doubted.
After I was cured I realised how ill I had been feeling - and I now feel just like I did when I was 8! Chronic illness is so debilitating because it creeps up on you and you start to accept it as the norm, you just want to get on with your life (I was a young mum when mine was at its worse) and it really does hold you back.
I am really sympathetic when I hear other people suffering from undiagnosed or untreatable illnesses. My advice is have the op, have the hyberbaric oxygen therapy, take up sports to increase your oxygen levels, cut out refined carbs esp sugar (because infection thrives on sugar) and stay away from sythesised hormones eg the pill, hrt. Natural USP progesterone cream is amazing for balancing hormone levels but you need to dose right. UK doctors don't recognise natural hormone cream, so don't bother asking them about it.
My advice is to have the operation asap.
Harurt Osteomyelitisinjaw
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joyce55668 Osteomyelitisinjaw
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Also..what about keeping a constant Alkaline PH? has that been tried? If we could potentially get the surrounding tissues to be inhospitable to the bacteria, maybe that would be a way also??
ChronicOMgirl Osteomyelitisinjaw
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choward1991 ChronicOMgirl
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Have you been successfully treated? If so what treatment are you undergoing or utilized for treatment? Symptoms? I'm just trying to learn as much as I can to try to get the best care and treatment options.
bryce23 ChronicOMgirl
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pat88053 Osteomyelitisinjaw
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Osteomyelitis is extremely rare (fewer than 10,000 cases per year) and is caused by an infection in a nearby tissue traveling to the bone. What makes the treatment tough is finding the right antibiotic to cure it. I was started on amoxicillin. I did notice a decrease in swelling but that is all. I happened to be due for a cleaning and went back to my dentist. While there, I asked for an x-ray of my jaw in the area below my teeth. He agreed and took the x-ray. He immediately referred me to Dr. William Adams who was an expert in the field of osteomyelitis in Indianapolis. The x-ray showed a growth in my jaw that was cutting off circulation to my jawbone causing it to crumble and expose my trigeminal nerve. I was now in danger of losing my teeth.
My first meeting with Dr. Adams was in September, 2015. He told me he wanted to perform a bone graft on my jaw to replace the dead crumbled bone. The bone graft was described like this. I would be sedated and my gum would be fileted open to expose the jaw bone. All the dead crumbled bone would be scraped out. Bone from a cadaver would be chopped up to the consistency of sea salt and added to my plasma to form a paste. This paste would be packed back into my jaw in place of what was scraped out. Then we would wait. Over time the bone graft would either take and new jawbone would grow or my body would reject it and I would have to have the bone graft performed again using bone from my own rib.
I had the surgery performed on 11/4/15. At discharge, I was told to gargle with a mixture of peroxide and Listerine 3 times a day. This set my mouth on fire. I limped along using nerve blockers and gargling praying new jaw bone would begin to grow. Eating, brushing my teeth, and talking were extremely difficult. But by my appointment on 6/8/15, new jawbone was visible on the x-ray. There were no spaces, just a continuous little white line of new bone growth. I was ecstatic.
It has now been almost a year since my surgery and my recovery has been good but there are residual effects of what I have endured. My jawbone has completely grown back but I am left with nerve damage. I have gone from 1800 mgs of nerve blockers down to 1100 and what I take actually keeps me comfortable. Dr. Adams thinks that as more nerves regenerate, my pain will be less. I also have a pins and needles feeling in my chin, a rubbery lip on the lower right side and part of my cheek is numb. Dr. Adams describes my case as the worst he has ever seen.
Most people with osteomyelitis have a hard time finding the right antibiotic to cure their infection. They try numerous kinds and even resort to hospitalization and a pic line to deliver the antibiotic through an IV. In my case, when Dr. Adams sent my tissues to pathology, no infection was present. My osteomyelitis was caused by a growth in my jaw and not an infection.
When I first googled the word osteomyelitis I was stunned at all the people who were suffering with this affliction. Many were treated with pain killers that were not controlling their pain. I believe this is because they needed nerve blockers and not pain killers. Many patients were seeing doctors that have no idea how to treat them, especially if their osteomyelitis is in their mouth. I am so thankful that Dr. Adams lives here in Indy and knew how to treat me. Publishing my experience with osteomyelitis will draw attention to this malady and might help someone out there that is suffering as I was. Dr. Adams is an expert and could share his knowledge with other endodontists. His expertise truly saved me from extreme torture.
No one knows when they will be faced with a rare diagnosis. In my case, it came out of the blue and I was misdiagnosed at first. I found that only people who were suffering for multiple years with no help were posting their plight on the web. I realized right away that if I found a cure, I should share my experience in hopes of helping others. This is my first attempt at doing just that.
choward1991 pat88053
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Did you Endo handle all treatment or were you under care of infectious disease dr as well? I currently have pic line but I'm just flushing. They took me off invanz as the inf disease dr just did new ct orbit/neck with no contrast and he said it's not showing anything specific now. However that's concerning when they finally found it it was a ct scan orbit/neck with contrast. The doctors that are supposed to be working together have difference of opinions for everything. I was on clindamyacin 300mg 4 times a day after the bone debridement and did great for 3 weeks and then it literally just stopped working and the pain came back and all these other symptoms that cause havoc on my body. I appreciate that you are sharing your story as it gives me hope but advocating for yourself is tiring! Being in so much pain is also exhausting and uncomfortable! Do you have email or is there private messaging through this or FB you are comfortable using I have so many questions regarding other symptoms etc I'd like to discuss if that works for you. I'm 43 and am a mother of 2. I am just trying to get healthy enough to live a semi normal life and not be stuck in bed 90% of time. Thank you
pat88053 choward1991
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choward1991 pat88053
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I will try calling you this weekend. I really appreciate it. If you want to delete your# I have it. Mine started with a tooth infection that they tried treating with 3 rounds of antibiotics before doing the root canal. The day of the root canal after the numbness wore off I started getting throbbing and then the pain returned as well. It has been a long road. I have always known that something was wrong as the Dentist that did the root canal saw something and was puzzled and wanted to pull teeth and do more root canals etc., but you could tell he was guessing. After many visits and complaints he sent me for a second opinion to another Endo. He recommended that I get out of town ASAP, as this was a serious medical condition. We live in small town areas of CA. So I went to a large medical facility and they couldn't find anything with labs etc. They indicated they could not read the CT Beam scan that only Dentist could read that etc. etc. I have some other issues besides pain. It affects my eye/vision & I have intracranial pressure that has since began. I have seen the eye Dr twice and he couldn't find anything and to an opthamologist/neuro surgeon. They said there is nothing relating it specifically to nerves attached to the eye or pressure. The neurologist is also closely montioring me. I was on oral Clindamyacin 300mg 4x daily for a couple months before they put a pic line in and I was on Invanz. I felt like I wasn't getting better and I developed blood clots and now on blood thinners so we decided to go back to oral antibiotics and work on clearing up the clots and getting off blood thinners in case they need to go back in for bone debridement and/or biopsies. Thank goodness for my oral surgeon he recognizes that it is still active and can see from redness of gums/jaw and the CT scans that there is something not right. Its just hard to keep waiting 3 weeks at a time in pain between each appointment for really no change. There is so much more but just to give you some additional background. I'm so glad that you indicate you are on the mend and had good care! I appreciate all you sharing your story in an effort to help others.
PTP071 Osteomyelitisinjaw
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Hi, everybody!
I came across this site when I was looking for information about osteomyelitis of the jaw. I have an appointment with my oral surgeon tomorrow morning but I was hoping some of you could share what your initial symptoms were.
I had a wisdom tooth extracted mid December and it hurt like holy h**l for two weeks. I eventually went back to the office and I had a dry socket but it didn't look infected, not even on x-ray. The surgeon decided to open it up again seeing as I had so much pain and lo and behold - he found pus inside. He debrided the would, packed it with dry socket gel and stitched it up.
A week later I got the 'all clear' seeing as it appeared to be healing, but 6 days later I was back due to pain. What do you know? Another dry socket. No chrcking for an infection this time though.
I was told I don't seem to be clotting and the bone in that area was very poorly vascularized so it would take some time. I went back twice to have the packing put in until I couldn't stomach any more clove and decided to let it heal on its own.
After another week and a half or so, I finally had my first pain free day. Unfortunately, it was only one day.
The pain started up again and my lower lip and chin started tingling and burning, so my doctor diagnosed me with Shingles. I never did get a rash. I was diagnosed a week later with TMJ Disorder but I know I don't have that. So, I made another appointment to go back to the surgeon because the pain has become unbearable!
I'm getting a deep, throbbing pain from the socket that radiates to my other teeth, all throughout the jaw bone, up to my ear and even as far as my neck. It literally feels like a cross between a dry socket and an abscess! My jaw also swells mildly and goes back down from time to time.
From what I've read in the medical journals, I would think everyone who's had OM of the jaw would have extensive swelling, puss leaking out of the extraction or other teeth, fistula between the jaw and the skin and all sorts of other obvious problems, but many of you weren't diagnosed for years, so I'm sure you were showing much milder symptoms for some time.
pat88053 PTP071
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PTP071 pat88053
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I had my appointment with my surgeon yesterday and told him that I felt like somebody "kicked the s**t" out of me on my left side. He took a look and said it was because my gums still haven't grown back and filled up very well and the root of the molar next to it was exposed. He offered to flush the site and when he did it was the most painful thing I've ever felt in my life!
He told me to have my regular dentist do a bite wing x-ray on that tooth and check to see if it needed a root canal. If not, he was going to go what I assume is a gum graft to close the socket.
I saw my dentist today and after my x-ray and exam he said the tooth is perfect but he could see a shadow behind it in the bone of the extraction site.
He really felt like they should have done another panoramic x-ray yesterday and his advice was, "The gum graft isn't gonna help you and you really need to get another panoramic done." I think he's telling me what I already know without actually telling me because, you know, ethics and what not.
I called my surgeons office and I can't be seen for another week.
I'm fantasizing about packing a bag and moving into the hospital for the time being. I'm so exhausted and this is the most painful thing I've ever experienced.
pat88053 PTP071
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Have u been given any nerve blockers for pain? Our mouths are full of nerves and the pain from an aggravated or exposed nerve is the worst. Unless u calm down the nerve pain u can't figure out what else might be going on with your case. My OM started after a root canal and I went to the ER after my dentist could find nothing wrong. They treated me properly with nerve blockers. Getting this relief of my excruciating pain right away allowed me to be able to suffer through the multitude of appointments and xray that were to come. Start with pain relief (nerve blocker) and go from there. I take gabbapentin.
PTP071 pat88053
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It's funny that you mention nerve blockers and gabapentin specifically. I actually had one appointment between being diagnosed with Shingles and TMJD and that was was because my new doctor was thinking it wasn't Shingles at all but PHN from my Shingles attack last year. I previously had Shingles along the 2nd and 3rd division of the trigeminal nerve and at some point I thought this pain was a PHN flare up, since it mainly hurt in my ear and my chin and lip were experiencing paresthesia. I did a trial run with Horizant, which is the extended release Gabapentin and it had zero effect on the pain. In fact, my pain levels kept rising and my doctor said it's not nerve related and decided it must be TMJD.
The pain is way more intense and widespread now and my dentist was kind enough to prescribe some pain medication. I went from a level 8-9 to a 5, which is mostly the deep seated throbbing from the extraction site and I am beyond grateful for even the smallest reprieve.
pat88053 PTP071
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PTP071 pat88053
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Even at a lower dose (600 mg), the side effects were awful. I know that some people get used to them but I spent a few hours every day feeling like I'd been hit with a tranquilizer and the rest of my day I was beyond exhausted. Like, I could sleep 20 hours a day exhausted. I can't live with this pain, but I absolutely can not take that medication! There were a few more side effects and they were pretty scary.
pat88053 PTP071
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pat88053 PTP071
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PTP071 pat88053
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I just thought I'd go ahead and give an update since so many people often disappear from message boards without giving the readers any resolution to their situation.
I had another panoramic x-ray last week and the new dentist said it looked good, nothing strange. My pain has still been terrible but the last two days have been much better than the past few weeks. I was hoping I was actually getting better.
I called my dentist today to schedule a root canal I've needed for a while and he wouldn't see me until I got my pain under control from this issue first. He gave me a referral to another oral surgeon and I went in today for a second (or third, or fourth) opinion.
My new surgeon said I should not be having this kind of pain three months post op. He reviewed the x ray and felt that a cone beam CT was needed so I had that done.
The diagnosis? Osteomyelitis.
Although my gums appear to be healing at the extraction site, the bone underneath appears to be collapsing on itself. It was pretty horrifying and disgusting to see, but also fascinating.
It's a terrible diagnosis but I am so relieved to finally have a diagnosis and a good surgeon in my corner. I feel a bit vindicated too.
I'm having surgery in a few days and we'll get more answers then. My surgeon told me it's gonna be a battle. So comforting.
My advice to anyone in the same position that so many of us were in, advocate for yourself! We definitely know our bodies best and we have to follow our gut instincts. If I listened to any one of my doctors, previous surgeon, etc... I can't imagine what would have happened.
melindasmakeup PTP071
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I'm so glad you were persistent. Surgery will help your pain. I am starting to think my osteomyelitis is recurring again. My infectious disease dr keeps blaming my pain on damaged nerves. I don't think that is the only reason for the jaw pain. I've been having many other symptoms, nausea, fatigue, sweating episodes, headache, and overall aches. I'm tired of feeling like crap and having severe facial pain. I think I'll have to find a new Dr., I've been with my current doc for 9 years.
choward1991 melindasmakeup
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I'm so sorry that you maybe going back through a terrible time. It's interesting that your illness description seems to be simplistic to mine. I endure terrible bouts of nausea/vomiting, chills, sweating, low grade fevers as well as what the ID Dr is dying is TN & the pain on left side of face. Terrible ringing in the ears when pain is elevated. Are any of you being treated in California? I've been taken off Ertapenam IV meds and placed back on Oral Clindaymacin 300 mg every 6 hours indefinitely. I had the bone debridement in December 2016 & had 3 weeks of Heaven. Now I'm back to dealing with all of this. My Oral Dr recognizes that the gum is still very inflamed and the newest CT orbit shows thinning of the maxilla as well. The possibility of doing hyperbarrack oxygen has been thrown around and we will discuss in next month or two depending on how things are looking. I thank you all for sharing & updating as no one really understands how this infection has taken up the last 2 1/2 years. It's exhausting & frustrating!
PTP071 choward1991
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I'm in southern California.
I'd also like to know if anyone else is being treated in this area in case my situation isn't resolved so easily and I need to start looking into other options.
choward1991 PTP071
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What part of Southern Ca? I goto Cedars Drs primarily now. I see Oral Dr locally who did the surgery/bone debridement in Fresno. There are 2 Oral Drs that my ID Dr recommends in LA, just not sure how close that is for you. I saw one of them and not 100% sure if he understood depth that this infection affects day to day living. The other one is who I wanted to see but I wasn't able to get into him my last trip for another opinion. Are you two still taking Oral antibiotics or gabapenton?
xxthisismelxx choward1991
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I have/had thoracic osteomyelitis, my pain started early October 2015, going on a year and half of my constant pain. The worst is the sweats/chills, best way I can describe would be "hot flashes" that women go through during menopause - yet I'm ONLY 32!!!.
I can't imagine how you all are feeling with it being in your mouth! I like reading other people's posts, I finally feel like there are people that understand the pain and frustration we endure. They say my osteomyelitis has "cleared" yet I'm left with a few herniated discs, the infection ate through some of my spine and in turn I got these lovely effed up discs. Luckily at this time I'm not working, in which normal work for me is in an office, stuck to a chair for 8 hours a day plus commute to and from - which I've eventually realized is where all my additional back pain comes from, sitting all day.
Best wishes all
choward1991 PTP071
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I have been seeing Doctors in LA that are affiliated with Cedars Sinai. The ID Dr., seemed to try but then the Oral Dr he had me see up there wanted to go back in for exploratory surgery and my local Oral & Maxo Dr talked to him and he wants to wait a couple more months. It's obviously a long process for everyone. There is an Oral & Maxo Dr in LA I've since been told is really good. May go there for another opinion when it works with other appointments.
choward1991 xxthisismelxx
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I didn't realize there was so many different types of osteomylitis. I couldn't sit or stand for long periods either. How do they treat that type of OM?
melindasmakeup PTP071
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choward1991 melindasmakeup
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melindasmakeup choward1991
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Yes that's me
choward1991 melindasmakeup
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Interestingly enough I saw him once last year. He said it was lingering complications from a previous illness I had back in 1998 more than likely. He wanted to see all my medical records from that before proceeding. (previously diagnosed with this after having Valley Fever which is (Coccidioidomycosis). I was carefully treated for this illness and all the Doctors where I live already tried to indicate this and I had my titers tested and they are fine. The symptoms aren't even close and most of these symptoms had started with dental infection and dental work. They have just progressively gotten worse except right after the bone debridement I had a good 3 weeks and a little relief. Do you still see the Doctors at UCLA?
PTP071 choward1991
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I'm in the Inland Empire, so not too far from LA.
I just started oral antibiotics and I'll start taking more after my surgery. I'm assuming my bone is going to be sent for a biopsy/C&S so we can tailor treatment.
My hope is that since I was on antibiotics after my extraction three times it was enough to keep the infection somewhat in check and it hasn't progressed too much. The destruction isn't even visible on x ray yet, so hopefully that's because it's still at an early stage.
I'm definitely not taking the gabapentin and I will do everything I can to avoid it! I told my surgeon the burning in my lip and chin is transient and it's a nuisance, the least of my problems really. Maybe it's because I've dealt with Shingles already and got through that but I can handle the burning nerve pain. The deep bone pain, radiating teeth pain and stabbing ear pain are what bring me to my knees though.
melindasmakeup PTP071
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Yes I agree with you about the nerve pain vs bone pain. My nerve pain can get pretty bad in my chin, near the mental nerve area, but when the bone pain kicks in and the muscle spasm in my neck flares, I am completely miserable. Right now I'm in the cycle where I wake up at 3 am in severe pain, and my jaw feels like it's tightening up so much that it's difficult to open my mouth. I also get some ringing in my ear, likely due to the inflammation in that whole area. After reading everyone's stories, it still seems like we are in for a long-haul. The Dr.s seem to be playing the guessing game and "experimenting" with different treatments. I feel like there isn't a true cure for us and no one can explain why we are still in so much pain despite the surgeries and antibiotics. It is really frustrating to me that there are new cures for cancer coming out, but they can't figure out how to kill bacteria in a bone?!! Doctors don't take our pain and suffering seriously. You guys, we are all WARRIORS. I know firsthand how hard and EXTREMELY painful this disease is. It's debilitating. And if you don't have osteomyelitis, you have know idea what we go through. People think we are exaggerating how hard it is to live with this. Or the doctors thing we are addicted to pain killers. It is SO INSULTING. I stopped going to the doctors because I was literally in tears from my last visit, where my doctor keeps saying it's just nerve pain and to go to a neurologist. They just don't understand. We know our own bodies and we can't let doctors try to put us in a box. Every case is different and must be treated uniquely. Does anyone have an ID doctor in the southern CA area that they trust? Maybe at Cedars?
xxthisismelxx choward1991
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They never were able to determine what specific strain, or bug that caused my OM so they "generalized" my treatment. I had a PICC line for 8 weeks, pushed 2 huge syringes of Vancomycin each day- also was on oral antibiotic for 4 months. Then after the infection cleared I was able to get trigger point Injections in my back, near where the herniated discs were
bryce23 xxthisismelxx
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bryce23 melindasmakeup
Posted