My son Daniel, who is now 5, was diagnosed with medulloblastoma in July of 1995 He had a total tumor resection, and had a chemothreapy couse of cisplatin,cytosin, vincristine, and VP-16 which he completed in Jan of 1997. He had no radation, and has been in remssion since late 95. He does have a VP shunt, as the tumor caused him to have obstructive hydrocephalus.
Daniel could not even lift his head after the surgery, and he could not talk After a lot of rehab, he can now walk, ride a bike, etc, but he still can not talk. He is cognitiviely fine, he can even do first grade level spelling words on the computer, plus loves math games But his drs and i did not undertsand why 3 years post op he still could not talk and stil has some cordination problems So, we did a PET scan Much to everyones suprise the PET scan showed that Daniel has hypometabolisam in the thalamus. plus mild hypometabolism in the superior temporal cortex
Daniel also has unilateral micropthalmia, forr which he has had several surgeries for,has babsal cell crcinoma syndrome, but the hypometabolism is not assocoated with this syndrome
My question is that the PET scan dr here wants to do another scan, possibly with hydroxyephedrine, to determine the etilogy of the hypometabolism Do you have an opinon of what may have caused this, and would another PET scan really help?
The results of the PET scan are interesting. The real issue, however, is will another PET scan change anything that the physicians would do for your son at this point? It doesn't seem that it would and the scan would, therefore, be less important.
The significance of the PET scans is unclear. The posterior circulation from the basilar artery does supply areas of the thalamus and temporal lobe, though difficulties with hypometabolism in these regions after surgery in the posterior fossa would not be the expected course.
Ask your physician what he thinks the PET scan means and whether it is really necessary to do another one. If the results would change therapies for your son with the expectation of improvements, then go for it.
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