I am interested in making contact with any adult that has been diagnosed with madulla blastoma or caregiver who is connected with someone who is going through this disorder
My brother had a medullablastoma removed in 1983 st the sge of 27. Following surgery he had full brain and spinal cord radiation.
At age of 48 he developed anterior horn cell degeneration, essentially radiaton necrosis. He is quite disabled: cannot walk without support, muscle wasting, speech and swallowing problems, cannot move his eyes, ect.
Anyone else have this problem. Would like to share treatments for symptom management.
My mother was diagnosed with medullablastoma in March 1990. She had surgery to remove the tumor and took WBRT for 8 weeks. She is alive today but lives with many deficits. She has progressed dementia along with many other issues. Thank you all for your posts. They are so helpful to read about others in our situation.