suspected mesial temporal ganglioglioma

yes, they tend to do surgery now (vs wait and see) in case of (diffuse) low grade glioma (LGG; grade 2 or higher). 

studies show  that surgery results in better long-term outcome for (diffuse) LGGs. morever, surgery is safe and effective these days (though many complications may follow from the surgery). 

the thing is that DNET/GG do not fall into this "standard" glioma category. 

LGGs grow (~4mm per year) and eventually turn into higher grade, while DNET/GG do not (or very slowly) and do not turn into higher grade (hence they are "benign"). 

DNET/GGs are typically operated because of epileptic seizures they cause, not because they grow. 

so I fully understand why a neurosurgeon would recommend surgery even for suspected DNET/GG as MRI cannot 100% tell whether it is benign or actually a LGG. 

however, IF it is a DNET/GG, wait and see is in fact an option, based on all i have been told/have read. however, there are not many published cases as it is so rare to find DNET/GG without seizures/symptoms and at our age. so we are simply a very rare case. 

at the end of the day, it may come down to the question of whether you trust your experts and follow their recommendation. 

that's the point.because nobody told be about diffuse. what it means diffuse. because i dont recognize this term in my rmi tc etc. im going to talk again with neurosurgeon.the first one was not ok to be so aggressive but wait one year and see. but they both told me that they cant say 100% is grade one.thanx again

I am 52 now with no seizures etc and they think would be there since birth.  Thing is as size of plum can’t believe it was that size at birth, but neurologist at appt said the “with contrast” showed no sign of activity and that’s why I was told to just go away and live my life!  I didn’t  know how rare this was! I have appt to see GP Next week and will discuss as feel sure I should be monitored.

they told me mine too is there from a lot of time.
they told me 6 months are not too much to see if it grows.
but i took the second mri 8 months later and it didn't show changes , growth etc.
no contrast enhancement
so im really confused on why they want to take surgery as i have no symptoms.
no seizures
thanx for your reply

hi Zanna

regarding size of a tumor at birth: it can be this size at birth - i have seen many cases where a Ganglioglioma/DNET has been detected - due to seizures - in very young children (age 1-2) and the tumors were relatively big (bigger than size of a plum in many cases). in fact, they tend to be somewhat larger (esp. the cysts) in these young children. 

if you see your GP next week, can you ask for the suspected diagnosis of your brain lesion - do they suspect it to be Ganglioglioma / DNET?

to add one more comment about "contrast": while it is typically a good sign to have no contrast in a brain lesion, it is not a 100% marker for a tumor to be benign. many LGGs do not show contrast enhancements (but are not benign), and vice versa benign tumors such as Gangliogliomas/DNET often do show contrast enhancement (esp. GG, but also DNETs in about 30% of cases). 

I found some article about this


https://emedicine.medscape.com/article/340632-overview#a1

https://www.uptodate.com/contents/low-grade-glioma-in-adults-beyond-the-basics


thanx again

hello everybody:
im writing you because lately i think my memory is getting worst.
it seems i forget about small stuff, and cant concetrate too much and get tired soon.
if im speaking with someone and i have to wait time to say something im going to forget about the thing.
today i slept in the sofa and when i woke up i really had to think if it was morning or daytime.
the neurosurgeon toldme that the tumor in the right mesial temporal lobe is there from a lot lot of time so is not so fresh i have memory issues, but im concerned now

Hello

i am sorry to say that many  types of cognitive issues are common with brain tumours both from the tumours and any treatments. What you describe is familiar to me. For some things work-arounds may be possible, like post it notes or relying on prompts from loved ones and friends who understand. Concentration and focus  too is but two  of the effects. Worth mentioning it to your clinicians as there may be therapy classes which will help too.

Best wishes

Brian

hello hemsby
sorry for the long delay
I have sone news
2 weeks ago i went to the first neuroradiologist , the one who took the first mnr.
he told me
"if you'd be one of my family member i will tell you not to take the surgery right now"
this for the main reasons you told some posts ago.
i called another neurosurgeon and told me there's no hurry.
and that everyone who tells me this surgery is a joke i have to run away fast from him.

the neurosurgeon i trust told me to relax and take another rmn in september then see what happens.
im ok right now
but confused
what about you?
bests