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Fibrous dysplasia of the skull with intractible headache and bisphosphonate therapy
To any doctor--
I am a 30 year old male with a 3.5 centimeter supra-orbital bone tumor that has been completely stable on scans since 3 and 1/2 years ago. I have had a continuous intractable headache behind my forehead which has not responded to the usual headache therapy regimen. It is believed to be monostotic fibrous dysplasia of the skull. I have found articles to suggest that high-dose bisphosphonate therapy (40 mg/day for 6 months) offers a significant improvement in patients with fibrous dysplasia of the skull. Do you believe that since my fibrous dysplasia has remained static / unchanged in almost 4 years that bisphosphonates would possibly be helpful to a large degree?
Also, what do you know about the risks of taking a high dose of this drug such as Fosamax?
Here's one of the articles I found:
1: J Neurosurg. 2008 Nov;109(5):889-92.
Related Articles, Links
Use of high-dose oral bisphosphonate therapy for symptomatic fibrous dysplasia of the skull.
Chao K, Katznelson L.
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. Overall, alendronate was tolerated well, although in 1 patient it was discontinued early due to esophagitis. High-dose oral bisphosphonate therapy is an alternative therapeutic option for the palliative treatment of patients with fibrous dysplasia of the skull.
PMID: 18976079 [PubMed - in process]
I am a 30 year old male with a 3.5 centimeter supra-orbital bone tumor that has been completely stable on scans since 3 and 1/2 years ago. I have had a continuous intractable headache behind my forehead which has not responded to the usual headache therapy regimen. It is believed to be monostotic fibrous dysplasia of the skull. I have found articles to suggest that high-dose bisphosphonate therapy (40 mg/day for 6 months) offers a significant improvement in patients with fibrous dysplasia of the skull. Do you believe that since my fibrous dysplasia has remained static / unchanged in almost 4 years that bisphosphonates would possibly be helpful to a large degree?
Also, what do you know about the risks of taking a high dose of this drug such as Fosamax?
Here's one of the articles I found:
1: J Neurosurg. 2008 Nov;109(5):889-92.
Related Articles, Links
Use of high-dose oral bisphosphonate therapy for symptomatic fibrous dysplasia of the skull.
Chao K, Katznelson L.
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. Overall, alendronate was tolerated well, although in 1 patient it was discontinued early due to esophagitis. High-dose oral bisphosphonate therapy is an alternative therapeutic option for the palliative treatment of patients with fibrous dysplasia of the skull.
PMID: 18976079 [PubMed - in process]
I have fibrous dysplasia in my skull I have a piece that reaches out toward my left optic nerve I was on a high dose of zometa and it did not relieve my headaches the effects that I have is that I am not able to get my wisdom teeth out because they are afraid that I will get narcosis of the jaw they say I have to wait 5 years after my last dose.
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