This question was answered on Thu 04, Mar 2010 08:01pm by Dr.Kokil Mathur

Monostotic Fibrous Dysplasia of the Occipital bone causing Occipital pain (neuralgia?)

    
Asked by blackd (Male; 29; AUSTRALIA; No significant medical history.; Relevant drugs:ibuprofen/codine ) on Thu 04, Mar 2010 06:00pm

Hi, I'm 29 yo, and for the last few years my occipital bone has been growing larger. I had it inspected and a doctor told me there was nothing to be concerned about. A couple of months ago, I started getting constant headaches. This increased to a constant pain along the occipital nerve (at the back at first, though in the last week, towards the eye). A CT scan diagnosed Monostotic Fibrous Dysplasia of the Occipital bone. Back to my GP, and he prescribed me ibuprofen and referred me to physiotherapy to ease the pain in my neck. After a couple of sessions with him, my physiotherapist is concerned as he has acknowledged he can do nothing for the bone growth or pain this is causing to my occipital nerve over my skull. So - What else can I do? This pain is getting increasingly intense, and painkillers no longer have much effect. In my physios defense, my neck feels a lot better! Is there some kind of specialist I should be seeing?

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Answer by Dr.Kokil Mathur  on Thu 04, Mar 2010 08:01pm:

Hi! Thanks for your question on the forum. I can understand the stump in your treatment as what you have is not a common problem. As you know Monostotic Fibrous Dysplasia is a benign condition. Involvement of occipital bone is rare. There is no medical treatment for it except that clinical studies have shown that biophosphonates inhibit bone resorption and help relieve pain to a great extent. The most common drug therapy is intravenous pamidronate. Headaches can also be treated with occipital nerve blocks. You can talk to your doctor regarding this. Surgical treatment like curettage etc cannot be tried. However excision of tumors that are causing symptoms such as headache, dizziness etc can be tried. A CT scan should be done again if need be or you can take the scan already done. With this you can consult a neurosurgeon. Hope this helps. Please let me know if there is any thing else and do keep me posted. Take care!

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Comment by Dr. Harsha Priolcar on Thu 04, Mar 2010 08:49pm:
Hello and welcome to the forum. As Dr. Mathur has explained the condition is benign and the cause is unknown. Affected bone is prone to pathological fractures, so you need to be careful, where there is a chance of head injury, especially if you are involved in any form of sport. Other than that, as Dr. Mathur has mentioned, long-term biphosphonates are effective in reducing symptoms and increasing cortical thickness. Effective pain management with stronger painkillers and nerve blocks can be considered. Surgery may be considered in severe cases but chances of recurrence are high. The specialist to consult in your case would be a orthopedic surgeon and an oncologist who is experienced in treating bone tumors. I hope we have been of help. Do let us know if we can be of further assistance. Kind regards and all the best with your treatment.

Comment by Dr J Singh on Thu 04, Mar 2010 09:00pm:
Hello, Welcome to the forum. Dr Kokil has explained very well the treatment options that we have for monostotic fibrous dysplasia. It is a rare genetic bone disorder in which there is benign bone growth which can cause painful swellings and bone deformities. It is due to a gene mutation on a chromosome. When the disease produces symptoms, conservative treatment is the preferred management. Subtotal resection with close follow-up is required, particularly if important and vital structures are placed at risk. Although biphosphonates can be used but their use is fibrous dysplasia is very limited. FD of cranial bones is a progressive disease that can cause severe complication if removing of the dysplastic tissue cannot be done in the early stage of the disease. So I suggest you to consult a neurosurgeon and as DR Kokil has advised to get CT/ MRI head done or you can show him the reports if already done. I hope it helps. Take care and please do keep us posted in case you have any additional doubts. Kind regards.

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