Jun 17, 2011 - 7:29 am
Our son was diagnosed with several inoperable brain tumors in April. He has one week to go with the radiation and first round of Temodar. The docs say that any treatment will not make them go away, just "slow things down." The radiation has taken a heavy toll (mainly because this is the second time to be treated with radiation for a brain tumor...the first was 26 years ago at age of 8 with a medulloblastoma.) We are now his primary care givers as he can't live alone due to major cognitive and physical decline (balance, gait, speech, fine motor). We asked the doc about his applying for Social Security Disability and they agreed it was a good idea (their way of saying chances are he won't ever be able to return to work). I've heard such horror stories about people being turned down for SSD, that claims are initially denied and that it can take a year or more for appeals, etc.
One reason I'm concerned is that the initial pathology from the brain biopsy was wrong (said it was a recurrent medullo, which is really unlikely after 26 years). The doc sent the slides on to an eminent cranial pathologist at Johns Hopkins who said it wasn't a medullo, but a "high grade glioma." However, the chemo doc said it is an astrocytoma III, acting like a grade IV (in other words, GBM).
However, when filling out the paperwork for SSD, the form wants the exact diagnosis according to the pathology report. I'm concerned that the "high grade glioma" diagnosis is too vague and the claim will be denied. If the report had said Astrocytoma III, then I understand it would he would be put on a fast track for approval.
Anyone else have experience with applying for SSD for brain tumor? Any tips for helping to ease the process?