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June of 08 I started having pain in the right lower part of my mouth. A couple of days later I woke up with the right side of my face swollen about 3 times the normal size. The pain was worse than natural childbirth. I went to my Family Doctor. I was immediately given a shot for pain so that an X-ray could be taken. I was put on antibiotics and pain medication.
I continued to go downhill. My Doctor did everything possible to find out what was happening to me. I had a tooth pulled in April by a Myofascial Surgeon. I have a horrible time with removal of my teeth. I have to have surgery to get a tooth out. I had a stainless steel cap on this tooth for approximately 40 years. There is no telling what was used back then to seal the cap.
I went in to see my Family Doctor on Aug. 13th. He was setting me up with an ENT because my white count would not come down and my right ear stayed around a 8-9 on the pain scale.
That evening my son and I went to the grocery store. I felt as if I was going to die. I made it to the register and told my son to tell them to call 911. My son sprung into action because I had a heart attack 2 years prior. By the time the Paramedics arrived he already had 3 baby aspirin down me. By that time I was lying on the floor. I was having an ocular seizure at the time.
I can't begin to tell you how I felt when I was put on the stretcher. I knew that someone was going to get to the root of my problem. I was admitted and had a cardio workup. I told my cardiologist about my jaw pain. He told me that he would get the right person in to work on that.
An Internal Medicine Doctor and my Myofascial Surgeon were called in. I spent 13 days in the hospital and had 3 surgeries. I had a Hickman Cath placed and came home on IV antibiotics for an additional 30 days. The antibiotics were able to stop the infection and spared a small amount of spongy bone in my right mandible. My surgeon consulted with an expert and they felt as if I had a chance of bone regeneration instead of having to put me through having a plate put in my mouth.
I am at the 2 year mark, and the bone has regrown. Unfortunately, I have permanent damage. Nerves and the muscle were cut during the surgeries. I have pain in my right ear, nerve pain, scar tissue as well as bone pain.I eat a semi soft diet, and can only chew for a few minutes. I cannot have long conversations as it causes bone pain. I have a wonderful Pain Management Doctor. I could not ask for any better treatment. They know what my goal is and work with me to attain that goal. On the flip side the rein me in because they do not want me to rush in reducing my pain meds.
It has been a long haul. I am no where near 100% and probably never will be. I have accepted that and live at my own pace. I do not feel as if anyone did anything wrong to cause this to happen. I have no qualms about returning to the same Myofascial Surgeon in the future, if need be.
I hope that anything I said here can help someone else that may be going through the same ordeal or has a family member fighting osteomeylitis. Please feel free to ask me questions. There is power in knowledge. Ann
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This sounds almost exactly like what I am going through for the past 2 1/2 weeks I had what I thought was an abscessed tooth that presented very quickly and pain was very intense. I went to the dentist and there was no problem with teeth. She could see that behind my last tooth on bottom right, there was an infection and sent me to ENT to check for salivary gland blockage/infection. ENT said not my salivary gland---must be tooth. Gen. dentist sent me to Endodontist and he did 3d x-ray and said nothing wrong with tooth. He decided to open up what looked like abscess behind my tooth. The area was full of puss and he cleaned it out and put me on antibiotics. The next day, the infection was back---not as bad, but back so added a 2nd antibiotic, so now I was on Clindamycin and Flagyl. The pain was worse and he was perplexed as to why I was having the extreme pain. Then I started having numbness in right chin and lower lip. Had unrelenting pain and face started swelling more and endo sent me to ER. They did all sorts of lab tests there. My white blood county was normal. My blood pressure was 182/90 which was likely the result of the intense pain. Endo sent me to oral surgeon next. I kept telling these providers that I felt very
December 3, 2015 - 9:01pmsick and unwell and was afraid. The oral surgeon was more concerned about the numbness and perhaps a brain lesion or something. I kept telling him I thought I had an infection---I did not have a fever with all the painkillers I was taking but I was extremely sweaty for no apparent reason. I felt like I might die and I truly had never felt quite as certain that something bad was going on. Finally, the Oral surgeon sent me for CT scan the first of this week and repeated labs. The CT showed a little inflammation in the area but nothing else. My white blood count had gone from normal to 14, after being on antibiotics for two weeks. So then the oral surgeon opened the mandible to get a biopsy and could see the deteriorated bone. Biopsy sent and wont' know anything for two weeks. I am still afraid. Afraid I'll lose my jaw or perhaps my sanity. I am still on antibiotics but one is being discontinued tomorrow. I have a visit with my primary care doctor tomorrow and am going to see if she can get me into the UNC's dental /oral program for coordinated care. I'm having to hop all over the place for various tests. None of this has been paid since I am on Medicare and the providers are not contracted with Medicare. Any experience you can share would be appreciated. This is still very scary and I am still very sick and in pain.
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Hi Cathy
December 17, 2012 - 2:18pmOur stories are similar please contact me at [email protected]
I am going through a horrible time
thanks
vesna
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Hi, my name is wendy, I appreciate a lot you 're sharing your story.
October 26, 2012 - 11:36amI'm so sad, because it's possible my mother has Osteomylitis, due to oral cancer and surgery, I'm so depressed because I 'm feeling lost her litle by litle, We have no diagnosis yet, she is running to do a Cat scan to see if she has an abscess or has osteo myelitis, I hope either of them, the infeccion is going away after four week struggling with that, sha had radical surgery nod involve, thyroid, sublingual glands, etc. she lost her right cheek, a plastic surgeon did a spectacular job taking skin from her neck, she is not a beauty as before, but she is alive, trying to fight against oral cancer and now infecctions and pain.
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Thank you for sharing your story. I am on IV antibiotics for six weeks now for osteomyelitis. My new dentist discovered that my old dentist left a broken instrument stuck from the root of a tooth into my jaw from a root canal that was done 2 and a half years ago. I was not told at the time about the instrument. I had about 14 root canals over the next two years and had to go to another dentist who discovered numerous abscesses from inproperly done root canals and removed the tooth with the broken off instrument and some of the bone in my jaw. I had gotten so run down and ill, pain and fatigue, that I cannot do housework and nearly lost my job from being sick so often with my teeth and fatigue. Now, my physician recommends that I have all my teeth removed to prevent more infection and not have to repeat the IV antibiotics which keeps me from being able to work as I am at the hospital more hours than at home. My dentist is against it. I am interested in what others have done to help themselves. Thanks....Cathy
September 2, 2010 - 9:44amThis Comment
Oh Cathy, I'm so sorry. Osteomyelitis can be really difficult to treat. I have to say though, in your position I would definitely get a second opinion. Sometimes chronic osteomyelitis necessitates amputation if it is in say, a toe, so I can see where pulling all your teeth might be necessary, but I'd sure want to get other opinions in case there is another option.
Thank you for sharing your story, and please keep us posted if you don't mind.
September 6, 2010 - 6:40amThis Comment
Cary, thank you for your kind words. I live by the rule that if you complain about a pair of shoes, look around and you will see someone that has no feet.
It's hard when you are initially going through a major medical problem, but I know that there are people in the hospital that are in medically induced comas, some are taking their last breath, and some will never be able to walk or talk again.
Have a great evening. Ann
July 12, 2010 - 2:57pmThis Comment
Ann, thank you so very much for sharing your story. I'm sorry you had to go through all of that, but you are clearly a strong and intelligent woman and I know your words will help others.
Thank you for visiting the site.
July 12, 2010 - 6:43amThis Comment