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OhioBob Junior Member  Posts: 7 |
posted 12-18-2002 11:35 AM
  
I am looking for help for my wife. She has had succesive debridements over the last two years and 9 weeks of I.V. antibiotics this past spring. She also had a heavy Coumadin dosage program for six months. She has more recently had four 60mg infusions of pamidronate over the last three months. Acute osteomyelitis has never presented, never any drainage or evidence of it. Diffuse osteomyelitis is what I believe to be the accurate diagnosis to be after many doctors, much diagnois and internet research. The debridements helped temporarily each time. The I.V. antibiotics did not help with pain. A culture with sensitivities was obtained as part of the infectious treatment. Several changes in antibiotic during the I.V. program and it did not reduce pain. The Coumadin did not provide any relief. The pamidronate infusions gave remarkable relief, but only for a short period of one to three days after infusion. The pamidronate program is over for at least six months due to max dosage limits. Neurontin and Tegratol have been successful in managing pain, but not totally. Progression of the severe problems seems to be halted, but the pain persists and oscillates day to day. The pain was very severe and disabling over a two year period, but seems to be in check in recent months with the antiseizure meds. What is next? Who is similar? I am new to this forum and this is my first post. OhioBob IP: Logged |
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CINDYLOUWHO Member Posts: 48 |
posted 12-22-2002 12:43 PM
Hi OhioBob, I'm so sorry to hear your wife has been suffering so long with this painful disease. Have you read any of the other posts on this board referring to osteomyeltis? There are several other people who are suffering from this and have posted their experience with it, that may be of some help to you. My 18 yr. old daughter developed osteomyelitis after having her wisdom teeth removed this past June. Thank God, she seems to be cured from it now, after several debridments and 9 weeks of IV antibiotics. The debridment and IV antibiotic should be done at the same time from what we were told, to be effective. My daughter was on Clindamyacin 900mg. along with Ceftriaxone antibiotics. She was diagnosed with osteomyelitis of the mandible. The doctor did mention that if the debridments and IV therapy weren't successful, he was going to try her on Hyperbaric Oxygen Therapy. They also stated that if these treatments didn't work, then they would have to remove her section of jawbone and teeth that had the osteo, and she would have to have reconstructive surgery, replacing the jawbone with hip bone. I'm sorry, I'm not familiar with some of the terms you used. I don't know what diffuse or acute osteomyelitis means and I don't know what coumadin or pamidronate infusion is. I hope you find the help your wife needs to overcome this awful and painful disease. Luckily, my daughter did at the Oral and Maxillofacial Surgery Clinic at University Hospital in Indianapolis. It's a teaching hospital and maybe they can be of some assisstance to your wife's case. I will be praying for your wife and hope that you find the help you need. God Bless  Cindy IP: Logged |
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OhioBob Junior Member Posts: 7 |
posted 12-22-2002 02:58 PM
Cindy, Thanks for the response and prayers. I read the posts about your daughter last week. Very scary. I am glad for her and for you. I know how tough it is to watch. Too tough for sure. Praise God that she was cured. I know of one other teenager that had similar problems from a wisdom tooth extraction. She went through the debridement/antibiotic protocols but it did not stop the pain. In her case, the disease started from infection, but could not be stopped. The rapid progression of your daughter's condition (I gathered that from the posts) was a standout difference. The other difference was that she suffered for many, many years (approx six). All through her teens and into adulthood. We dialogued with her in the first part of the year, just as she was taking on a treatment being used in France for some of these cases. She was about to go for major reconstruction, but her doctor thought it worth the try for this newer treatment since it is not too full of side effects. It worked very well and gave her complete remission. Last time I checked with her was about 3 months ago - up to that point all was still cured. The treatment was a power dose of pamidronate. Pamidronate is called a "bisphosphonate". It's in the class of bone medicines used for bone diseases such as Pagets and osteoporosis. It works by slowing down and even halting the bone resorption process for long periods of time. Women with severe osteoporosis take drugs in this class, for example Actonel and Fasomax. Pamidronate is 1000 times stronger and is injected over several hours. There has been one success in this country and a couple in France with regard to the chronic jawbone pain. There is much research and clinical trials going on with this and similar drugs related to several bone disorders. Coumadin is the standard oral dose for blood thinner. Stroke and heart patients take it for life. One underlying condition that is related to some of the chronic jawbone cases is blood clotting in the bone marrow. The blood thinner is a treatment to dissolve the clots and it has worked for some. The mechanism is that with restored blood flow, the bone chemistry and immune systems return health. Acute versus diffuse osteomyelitis: Acute is when that bone turns to soup - it shows up clearly on the x-ray like it did in your daughter's case. Diffuse is a name used for the condition that does not show up clearly on x-ray. There are a few "advanced" doc's that can see it in the x-ray, but it is very subtle. I have never been able to tell from looking. Whether the diffuse form is really infection is an issue. It has been reported that the diffuse form follows from the acute form in rare instances when acute has been halted by the debridement/antibiotic therapy, or by natural immune response. The term osteomyelitis may be a misnomer here relative to the term "diffuse osteomyelitis". It may be poor blood flow or bone resorption, or both, or something else leading to the condition. Our next move is to look for a resistant bacteria that is normally not studied in infectious cultures of the mouth. One that is so common that it is overlooked, one that is resistant to the clyndamycin, ceftriaxone, and Meropenum I.V.'s that she ran in the spring. It is a long shot, but trying to find it does not seem to be an intrusive activity to undertake. It may just be that the condition has done long term and/or permanent nerve damage. This is a position that many doc's take, and we think most take this position all too quickly. Some have concluded it without ever looking in her mouth. But we will not concede that possiblity. Hopeful and hard-headed I guess. I am interested in how to make contact at the clinic that solved your daughter's condition. And in the people that were involved. Wish us luck and thanks for the reply. Thanks for taking the time during your daughter's illness, too. Many will be helped by the posts. Bob IP: Logged |
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