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CRMO

 
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CombinedNSP
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Joined: 13 Dec 2006
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Location: Cleveland, OH

PostPosted: Dec Sat 16, 2006 1:19 pm    Post subject: CRMO Reply with quote

CRMO

Does anyone have any info or experience with this condition?

What I have found through eMed: Background: Osteomyelitis is an infection of bone and bone marrow and can be subdivided into acute, subacute, and chronic stages. Chronic osteomyelitis may appear as such at the initial presentation, as not all patients show progression through the 3 phases. Rarely, a sclerotic nonpurulent form of osteomyelitis occurs; this is termed Garrès sclerosing osteomyelitis. Other related disorders are chronic recurrent multifocal osteomyelitis; tuberculous osteomyelitis; and synovitis, acne, pustulosis, hyperostosis, and osteitis (SAPHO) syndrome.

Chronic osteomyelitis is a severe, persistent, and sometimes incapacitating infection of bone and bone marrow. It is often a recurring condition because it is difficult to treat definitively. This disease may result from (1) inadequately treated acute osteomyelitis; (2) a hematogenous type of osteomyelitis; (3) trauma, (4) iatrogenic causes such as joint replacements and the internal fixation of fractures; (5) compound fractures; (6) infection with organisms, such as Mycobacterium tuberculosis and Treponema species (syphilis); and (7) contiguous spread from soft tissues, as in diabetic ulcers or ulcers in peripheral vascular disease.

Infective process Osteomyelitis is an infective process involving all osseous components, including bone marrow. Chronic osteomyelitis results when the inflammatory process continues over time, leading to bone sclerosis and deformity.

The ends of long bones are the most common locus of infection, and Staphylococcus aureus is the most common infective organism involved. Traumatic fractures or previous surgery may be responsible creating the access for infection, which may also originate from sepsis in the hematogenous form.

Infection at the bone locus creates an increase of intramedullary pressure due to inflammatory exudate that strips the periosteum, leading to vascular thrombosis followed by bone necrosis and the formation of sequestra. Usually, necrosis of the large segments of bone leads to sequestrum formation. These sequestra with infected material are surrounded by sclerotic bone that is relatively avascular. The haversian canals are blocked with scar tissue, and the bone is surrounded by thickened periosteum and scarred muscle. Antibiotics cannot penetrate these relatively avascular tissues and are hence ineffective in clearing the infection.

New bone formation occurs at the same time (involucrum). Multiple openings appear in this involucrum, through which exudates and debris from the sequestrum pass via the sinuses. A periosteal reaction acts to circumscribe the sequestrum, producing a thick sheet of new bone or involucrum.

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The person afflicted with this condition is a teenage female, the only medical insurance the family has is the State Medical Card. She has been on all the meds possible for this and her next step is for injections called Methotrexate Subcutaneous Injectable, which is not covered by the medical card and the family could not possibly afford ($260) to pay this out of what they make. The doctors are also talking about 2 experimental drugs (not covered) or giving her a pic line for continuous morphine and antibiotics.

I am new to herbs and supplements and could greatly use expert advice. -Kathleen
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My son has had CRMO since May 2002 (now 17 yrs old). He was involved in a bus accident and hurt his wrist. After x-rays, MRI's, bone scans, two surgeries, 6 weeks on home IV Antibiotic therapy... he was referred to a Rheumatologist who has used Pamidronate Therapy. This drug is also used in Bone Cancer patients, however, it gives immediate relief - within 3 days - to all symptoms of CRMO.

The 1st treatment was for 3 days, then monthly for 2 days/month for 4 more months. He had complete relief for 5 months then had a small flare up and required a one day treatment, then two months later another one day treatment.

Although he still has CRMO, he is symptom free, and pain free!! Good luck with your daughter - I hope this helps! -Shelagh Caulder
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My daughter, now 14, was finally diagnosed with CRMO last week. After a softball injury of a hairline fracture when 11 years old, things just kept on getting worse. No specialist could find anything wrong. The pain kept getting worse and after xrays and MRIs, no one could find anything wrong. She went into Mayo Clinic for a biopsy because they were leary she had bone cancer. She went through hell that year in 6th grade. They discovered that she didn't have cancer--no cultures grew, but thought she had a bone infection. Was on oral antibiotics for approx. 1 year. Got better and better and eventually went back to playing club ball and her arm was very strong. Occasionally, she would have problems with pain and was told to take Alieve and use ice or heat. Things would get better and then again after several months the pain would start up. We went to have more MRI's and blood tests and xrays. Again, no one could explain anything and why she was having pain. This fall after months of no pain, she started having pain again and it was excruciating--starting at the beginning of school. She missed 8 days of the first few weeks of school. We finally have the specialist do another MRI and he then ordered a CT with a live needle biopsy. Again no cultures grew but they saw abnormal bone growth and pockets in the bone. The Mayo Clinic doctor diagnosed it as CRMO. This has been such a painful experience for our daughter and has actually stolen her childhood away. She has become very angry these past few years. We still have not met with the doctor at Mayo for an appt. after the diagnosis. We can't until the week of the 10th and he will be discussing this disease with her. She is now on Diclofenac Sodium twice a day, and using Tylenol when necessary. The inflammation has gone down and the pain has decreased and almost stopped at times, but the anit-imflammatory make her nautious and turn very red. We will have to look at another anti-inflammatory. We also tried hyperbaric oxygen treatment and she actually did feel much better and may start this again. We will also try glucosamine chondroitin with MSM daily. A pharmacists recommended this. I wonder is anyone else has tried this? Or, any other comments regarding this terrible rare disease and how to cope would be much appreciated. -dede
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My son was diagnosed with chronic sclerosing osteomylitis three years ago. He was 10 at that time. At the age of 7 he fell on his chin doing a wheelie on his bicycle. He broke his jaw, a hairline fracture on the affected side and on the other side he broke the condyl off. He had surgery and clips put in to hold his jaw in place. Three years later he developed swelling in his jaw. He had a CT of his jaw. We had diagnoses of a clogged parotid gland, possible autoimmune disease, and then we were sent to have a bone biopsy. When the surgeon looked at the CT and the biopsy results, he gave him the above diagnosis. He was treated with prednisone for 10 days to start with and had to take naproxsen. The swelling went down, but it comes back every few months. The doctor said it would flare up during times of growth and would get more frequent during puberty, which it has. This has been a horrible thing for him. He has days when he can't open his mouth to eat, which is hard for a growing boy who is always hungry. The doctor expects it to subside when he has stopped growing. We'll see. -June
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