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Pediatrics Community
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pineal cyst/tumor
by deedee26, Jan 15, 2008 04:06PM
My five year old adopted has a host of medical issues, some of which are only just now surfacing. She has an unusual face, with a brachiocephalic skull, under developed jaw, developmental delays, spina bifida occulta, cerebral palsy, right aortic arch defect, aberrant left subclavian artery, trachea and esophageal strictures. She just had a G Tube put in, and has been diagnosed with obstructive sleep apnea and is on oxygen at night.
The last MRI showed 'diffuse cerebral volume loss', 'an 8mm ovoid lesion following CSF signal on all sequences adjacent to the pineal gland", 'moderate mid-facial hypoplasia'.
The radiologist says the pineal tumor is 'without affect on surrounding structures' which makes no sense to me, given the size of it.
Various experts want to do different interventions. Myo-facial wants to work on lengthening her lower jaw, cardiology wants to pin the aortic arch, and remove the vascular ring.Another expert says do a tracheotomy and don't touch the aortic arch/vascular ring.
Comments?
Deedee
The last MRI showed 'diffuse cerebral volume loss', 'an 8mm ovoid lesion following CSF signal on all sequences adjacent to the pineal gland", 'moderate mid-facial hypoplasia'.
The radiologist says the pineal tumor is 'without affect on surrounding structures' which makes no sense to me, given the size of it.
Various experts want to do different interventions. Myo-facial wants to work on lengthening her lower jaw, cardiology wants to pin the aortic arch, and remove the vascular ring.Another expert says do a tracheotomy and don't touch the aortic arch/vascular ring.
Comments?
Deedee
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