Dr. Young,
I e-mailed you a copy of Dr. Long's report. It's a pdf file. I wanted to copy the diagnosis part to this thread, but I couldn't figure out how to do that. He didn't get the history right, so I sent him corrections which he added to my file. I also sent him e-mails regarding what you've said re MRI scans not always showing everything about the cord, and that you didn't think the deterioration of my condition I describe is normal aging with SCI. His plan was to try Cymbalta again (I did - still couldn't handle side effects), and increase Lyrica again (I'm working on that, more for seizure prevention than pain relief. I hadn't used it for seizure prevention before, as my seizures started in 2009.) He mentioned deep brain stimulation, but didn't recommend it (I'm against it, anyway.) He thinks there is subarachnoid scarring which slowly occurred (is still occurring, he told me), and the possibility of tethering, but not enough evidence to warrant un-tethering (he told me that even if tethering was there, and surgery was done, it was very risky, it was unlikely to provide any pain relief, might not stop the upward progression of my sensation loss and pains, and that the scarring problem would likely repeat.) He doesn't see evidence of slowly progressive cord deficits (even though he said there has been change in the damaged area over the years. My guess is there was so little change from year to year that annual MRIs didn't show it, thus the "no significant change" reports every year, but scans from years apart did show much change .)
He is sending his report to Dr. George Jallo at Hopkins, the doctor who referred me to Dr. Long after he didn't see anything he deemed fixable in my MRIs.
I e-mailed you a copy of Dr. Long's report. It's a pdf file. I wanted to copy the diagnosis part to this thread, but I couldn't figure out how to do that. He didn't get the history right, so I sent him corrections which he added to my file. I also sent him e-mails regarding what you've said re MRI scans not always showing everything about the cord, and that you didn't think the deterioration of my condition I describe is normal aging with SCI. His plan was to try Cymbalta again (I did - still couldn't handle side effects), and increase Lyrica again (I'm working on that, more for seizure prevention than pain relief. I hadn't used it for seizure prevention before, as my seizures started in 2009.) He mentioned deep brain stimulation, but didn't recommend it (I'm against it, anyway.) He thinks there is subarachnoid scarring which slowly occurred (is still occurring, he told me), and the possibility of tethering, but not enough evidence to warrant un-tethering (he told me that even if tethering was there, and surgery was done, it was very risky, it was unlikely to provide any pain relief, might not stop the upward progression of my sensation loss and pains, and that the scarring problem would likely repeat.) He doesn't see evidence of slowly progressive cord deficits (even though he said there has been change in the damaged area over the years. My guess is there was so little change from year to year that annual MRIs didn't show it, thus the "no significant change" reports every year, but scans from years apart did show much change .)
He is sending his report to Dr. George Jallo at Hopkins, the doctor who referred me to Dr. Long after he didn't see anything he deemed fixable in my MRIs.
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