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38 year Survivor

pattin
Posts: 2
Joined: Mar 2013

My daughter had a brain stem glioma at age 16 months and we were told she would die within 3 months. they did radiation and she started getting better! Her tumor melted away - a true miracle, we thought! Now at the age of 38 that same radiation is slowly taking her life. She has had 3 major "stroke-like" events and many small ones that have put her in a wheelchair and are slowly robbing her of her speech, thoughts and life.

Is anyone else going through this after a similar bout with radiation. I guess we are lucky she survived this long, but, you know, it is never enough!

rbarkan
Posts: 5
Joined: Aug 2014

Dear Pattin,

   I am a 33 year old medulloblastoma survivor of 26 years and am also experiencing symptoms common to your daughter's. You might want to try getting an appointment with a neurologist, an ENT doctor, and vestibular, occupational, and physical therapists - they did wonders for me and I am now able to walk and function independently. Also ask a social worker or search online for the phone numberyour local Center for Independent Living - all the best to you and yours and God Bless.

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