BRAINSTEM TUMOR

[kimberleydust]

Earlier this year I had a Craniotomy to biopsy my pontomedullary brainstem lesion.  The diagnosis came back that I have a Pilocytic Astrocytoma.  It is benign and suppose to be slow growing.  It has grown 10% in 12 months.  I have numerous symptoms and due to it being located very centrally in the brainstem.  It sits on top of the medulla and growing down into it.  Pushes into the pons with a small lesion in the dorsal pons. Invaginates the floor of the fourth ventricle pushing into the cerebellum.  It is approx 2cm round and deep.  It is affecting the abducens and vestibular cranial nerves as well as the ascending fibres.  
My neurosurgeon will not consider any further surgery as he literally said it would kill me or make me a basket case.  The radiooncologist won't do radium unless my neurological symptoms get a lot worse and then that would only be to help slow things down.  
I am reluctant to just sit and watch and wait and see...
Do you know of anyone who has successfully had surgery on tumours in this area? and what degree of deficits they might have now.  
Also what other statistics or information can you give me on Pilocytic Astrocytomas.  The Neuro team seems to think I have had this since I was a child.

Thanking you so much for your time.
Louise

[Billsdaughter]

Maybe the National Brain Tumor Foundation could give you some answers or lead you to other experts. I have seen this discussed in their information. UC Medical Center San Francisco is highly regarded in this field. The best of luck to you.