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bisphosphonates for fibrous dysplasia of the skull with intractible headache?
Hi, I asked a question previously. I have a 3.5 x 2.5 cm supra-orbital bone tumor that is believed to be fribrous dysplasia. I began having an intractable pressure headache behind my forehead which became worse just over 3 years ago, and this is what lead to a brain scan. Since it's discovery in 2005, the tumor has remained completely unchanged. I have the monostotic disease. I have discovered some articles suggesting high success in treating people with fibrous dysplasia of the skull with intractable headache with high dosage of bisphosphonates (40 mg/day for 6 months).
Would this be worth trying, and what are the potential side effects of high dose bisphosphonates?
Department of Neurosurgery, Stanford University School of Medicine, Stanford, California, USA.
Fibrous dysplasia of the bone in adults is a rare anomaly of skeletal development caused by a defect in differentiation of osteoblasts. This condition is associated with bone pain, bone deformity, and an increased incidence of fracture. Involvement of the skull is associated with headache along with dysmorphic features. Until recently, the principal treatment has been resection or fracture repair, although the latter is often palliative at best. However, new insight into the molecular mechanism of fibrous dysplasia has led to the use of bisphosphonates to treat this disease. The authors examined the effects of high-dose oral alendronate (40 mg daily) for 6 months on 3 adult patients with intractable headache due to fibrous dysplasia of the skull. Each patient had disease processes not amenable to surgery. The patients underwent clinical follow-up at 1, 3, and 6 months. Their pain levels were documented at each visit by using a visual analog scale. All 3 patients demonstrated a significant decrease in pain levels and became independent of scheduled analgesics. Tumor bulk did not progress during this interval in any patient.
Would this be worth trying, and what are the potential side effects of high dose bisphosphonates?
Department of Neurosurgery, Stanford University School of Medicine, Stanford, California, USA.
Fibrous dysplasia of the bone in adults is a rare anomaly of skeletal development caused by a defect in differentiation of osteoblasts. This condition is associated with bone pain, bone deformity, and an increased incidence of fracture. Involvement of the skull is associated with headache along with dysmorphic features. Until recently, the principal treatment has been resection or fracture repair, although the latter is often palliative at best. However, new insight into the molecular mechanism of fibrous dysplasia has led to the use of bisphosphonates to treat this disease. The authors examined the effects of high-dose oral alendronate (40 mg daily) for 6 months on 3 adult patients with intractable headache due to fibrous dysplasia of the skull. Each patient had disease processes not amenable to surgery. The patients underwent clinical follow-up at 1, 3, and 6 months. Their pain levels were documented at each visit by using a visual analog scale. All 3 patients demonstrated a significant decrease in pain levels and became independent of scheduled analgesics. Tumor bulk did not progress during this interval in any patient.
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