Hello! I was diagnosed with neurofibromatosis in 2013. In March of the same year, I had craniotomy in Guangdong Provincial People's Hospital, and my right ear hearing could not hear any sound at all. Now my left ear hearing began to decline gradually. I had craniotomy again in September 2020, and fainted several times. Now I am taking antiepileptic drugs and liver protection drugs. I would like to ask whether there are domestic experts studying effective drugs for the treatment of this disease? If so, when will it be listed? Can you eat milk, beef and so on? What can I eat and what can't I eat? What should we pay attention to at ordinary times?
NF-2 monoclonal antibody is a new monoclonal antibody used in the treatment of schwannoma. The initial report suggested that it is effective for the vast majority of patients, not only in imaging features, but also in hearing improvement, and even miraculous effects in some patients. Phase 2 clinical studies in adults and children with NF2 with progressive vestibular schwannoma suggest that lapatinib can prevent tumor volume increase (24%) and hearing loss (31%) to some extent. However, the improvement of hearing function is slight and not lasting. I hope it will help you
Hello, your current situation is to accept this comprehensive treatment, because you have had this neurofibroma and have done some related surgery. At present, this epilepsy and other problems need targeted medication. It is suggested to pay more attention to diet.
Are your multiple neurofibromas all x in your brain? Or in the spinal cord? You can't finish a j craniotomy for multiple neuromas. After it was done in 2013, the right ear hearing loss affects the auditory nerve. In 2020, will the tumor relapse or grow up again? At present, there are no special inhibitory drugs for neurofibroma in the world. There is no taboo on the food you eat. You can eat beef and milk.