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Occipital Hemangioma
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Occipital Hemangioma

My 4 yr old was diagnosed 3 yrs ago with a 'right occipital soft tissue cystic-appearing mass likely representing a hemangioma" via MRIs. His most recent MRI was a week ago today in which the did his brain, lumbar, thoracic, and cervical spine. Starting at the age of 11 months, when this mass was discovered, my son has been running regular 105, 106 fevers randomly. Over time he has started to complain of regular, consistant back and leg pain which will put him in tears, even to the point of him sitting on the side while other children play. And he suffers from severe head pain...sometimes it's unexpected and lasts only 10 or so minutes, sometimes it's a severe headache in which it will put him down for the day ( and he will put himself to bed)...he has actually woken up screaming at night from a sound sleep clutching his head in pain....and on more than one ocassion. On the most recent MRI it was also noted that "there is left mastoid opacification and there is bilateral ethmoid and shenoid sinus mucosal thickening"...which his neurologist said means he has fluid behind his ear...even though he has tubes. In addition to that it has also been noted that he has bilateral cervical ribs. Now, a year ago when we went to a neurosurgeon who evaluated the mass, at the time, they did not want to remove it, unless it began to give him problems or symptoms, which now, he is having problems or symptoms of some sort but are they related? What are they related to? His neurologist gave us an appt for 4 months from now and his symptoms are not getting better, twice in the last week he has gotten up at night, called me and his father and urinated in his room, then this morning, just like the other time, argued with me that he was not awake last night...is he sleep walking or is this a larger problem? I understand he is a small child but from where he was, to us, he seems to be taking steps backward...please advise....thank you.
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