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fibrous dysplasia

Sandy

Message 1 of 1



I am a 39 yr. old female just diagonosed with fibrous dysplasia of the skull base, cervical spine and expanding into the spenoid sinus. Have had worsening neck and shoulder pain in the last 1.5 years and now headaches. I am finding all the info. I can about it and trying to find a Dr.who is knowledgable of this. Would appreciate any info I could get as to if anyone has had skull or neck surgery for this or tried Pamidronate to maybe slow it down. Not sure what to expect.

 


   
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