getin something done

i let my nf go for about 12 years and didnt know how serious it was intill i went to th e.r over other stuff and they found alot of tumors on my interinal body and it just started a hole new chapter in my life i have been threw 4 cat scans and 6 m.r.i.s with and without dye and spend 6 days in the teaching hospital and had a hard time get pain meds and after all that they told me there is nothin they can do 4 me ive seen on here were people has had surgry after surgry what have yall done that im not none of the docs in my town knows much about nf their all goin off of print offs off the computer can somebody out there give me some advice about getin the help i need please