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Diffuse Fibrillary grade II brainstem glioma

Amor Matris
Posts: 3
Joined: Nov 2013

My son is 9 years old and was recently diagnosed with a grade II diffuse fibrillary glioma (astrocytoma) in the mid brainstem. He has suffered migraines since kindergarten and now they have developed into status migraines lasting for weeks at a time. His tumor is in the Mesencephalon. We have been told by his NO that these tumors are normally found in the pons. He has no physical deficits besides general weakness and fatigue at the end of the day, but has significant cognitive deficits. We have been told it is inoperable and are taking a wait and see approach. As this type of tumor is normally found in the PONS, it has been a challenge to find any information regarding expectations for the future. We have been given no prognosis or disease progression other than a list of symptoms to be aware of. Is there anyone that has experience with this type of tumor in this location that can give us some insight on what we can expect going forward?

mccindy
Posts: 82
Joined: Jun 2013

Diffuse fibrillary astrocytomas can happen anywhere in the brain, as they grown from the astrocytes, which are support cells for brain cells.  Brainstem tumors are especially difficult because they are usually inaccessible.  I'm a little surprised that the NO isn't recommending some kind of treatment,since the tumor is obviously causing symtpoms with the headaches.  Grade II tumors are slow growing and can take years to progress; and from what I've read the  prognosis for children is often better than that for adults.  Where is he being seen?  It's never abad idea to get a second opinion from another doctor just to be safe.

Amor Matris
Posts: 3
Joined: Nov 2013

He is being seen at Arnold Palmer in Orlando but we are setting up appointments for a second opinion at Maimi Childrens. The lack of information is very frustrating. He is scheduled for his next MRI next April and his NO does not want to proceed unless the tumor is showing mass effects in the brainstem at which point I suspect he would have more severe physical symptoms. At this point they would do chemotherapy. I would rather not wait for this to happen even though all my research indicates that there are no added benefits to early chemo.

mccindy
Posts: 82
Joined: Jun 2013

I think you are making the right move by getting second opinions set up.  It's always a good idea to do that, especially when you are dealing with something so serious.  And a doctor who is more familiar with brain tumors may have a different outlook.  It  does also seem odd to me to wait so long for the next MRI.

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