suspected mesial temporal ganglioglioma

Hi there

thanks for your update. the advise you get gravitates towards what is my take as well: relax and do MRI in September, to see whether there is growth after 1 year. if you dont have symptoms - as appears to be the case - the only reason one would operate, as far as I understand, is if it grows. the next MRI will show whether there is growth. my experts tell me that growth/change would be assumed (between MRIs) as soon as  you start to get symptoms (esp. seizures in our case).

in a book on glioma surgery that has just come out it is mentioned that cases like you and me are increasing - incidential finding of supposed benign neoplasm such as DNET and GG (so-called LEAT histology). i personally know of more than 5 cases all > 30 years of age, without symptoms and in "watch and wait" mode (regular MRIs). 

i am doing very well and essentially live my normal life - except of course being aware of this thing in my brain once every while - which for me in fact sharpens perception and increases appreciation of "the moment" (vs. worrying about things in the future etc).

my next MRI will also be 1 year since the last, coming up this summer

good luck to you

thanx a lot for your precious reply as always.
i had the chance to contact another neurosurgeon and she told me no emergency , but the future is surgery.
but she told me to dont trust neurosurgeons who tell me the surgery is an easy one.
do i'll have problems after surgery? yes, due to the place the seizures are guaranteed.
so she told me tha the question is the sam, wait till september take the rmn and see if is growing. so they understand if is 1 or 2.
the neuroradiologist was shocke about the surgery advice, he told me that riht now is not an option as im asympthomatic.
this thing changed my life
i wonder if id never took the rmn and did't find it accidentaly how my life should been.
do you know the name of the book you told me?
bests

Hi there,

regarding surgery: i dont think that "seizures are guaranteed" after surgery, but what I have learned is that a) yes the risk is there but b) a really good/experienced surgeon can minimize the risk by ensuring that 100% of the tumor is removed. The studies I have seen on e.g. selective amygdala-hippocampectomy show that > 80% of patients are seizure-free after this surgery (when they have suffered from seizures before). however, there are, to my knowledge, no studies about cases like us: patients WITHOUT seizures before surgery and how the risk is to having seizures after surgery. overall i think the risk is significant but a good surgeon can help minimize it.

regarding the book: it is called "Glioma Surgery" but i am not sure i would buy it in your case as it is expensive (>140 USD) and covers many things not relevant for us. there is one chapter on LEAT tumors such as ours, and there they have this one short paragraph saying that due to increased use of MRI machines there are more and more cases where LEAT tumors are found by accident. they also report a case without symptoms where they found a DNET (40 year old man). 

hey hemsby
how are you?

i went to another neurosurgeon last month
he told me as always suspected dnet, ganglioglioma, astrocytoma.
he told me as the neuroradiologist that if i'd be one of his family memnber he wouldn't touch me.
im asympthomatic.
the surgery is no joke, my tumor tend to go upside. he told me exactly what the surgery is about, how they'll operate and all the risks.
so he suggested me to take another mri in the next 3/6 months.
and live as i didn't have it. 
and put aside my ipocondria and understand the difference between my symptoms and real symphtoms.
he told as the others that probably this tumor i really old and really slow growing.
he said what it should be based on mri. but at the end no one know it without histologic exam.
in think im going to take the third mri in september/october. 1 exact year after the last. and almost 2 after the first one.
do you think timing is ok?
thanx for you support 
best regards

hi there,

i am doing great. just had my yearly MRI - all is stable, no changes, and no symptoms. i live my normal life. 

as written in earlier posts, i fully agree with what the neursurgeon and neuroradiologist tell you - take another mri in sept/oct. i have been told exactly this by the one expert i trust most "I would not touch this if this was my brain, my wife's or my children's". 

the key, though, is that you are able to live with this without constantly worrying. i hope you can get there. 

all the best

Hemsley and others just signed me in extra to write the post here because your very, very rare situation fits almost 100% to mine. Sorry for bad english needs to work through google translator. Coming from Germany am 31 years old in August 2016, a 12 x 18 mm lesion would really be found by chance. Lesion is in the island region (temporal lobe), cystic character has no contrast-absorbing. Have and did not have any symptoms in this MRI should be made of Halz spine but have made a mistake of his head. It was then recommended clearly "Wait and see" Last MRT 08.2017 Without change. Now comes on 08.2018 also MRT. Second opinion neurosurgeon Wait and see neurologist definitely do nothing. All 3 suspect me also DNET / GG and say all 3 is probably innate and see no need for action and say very carefully that it has a good prognosis (hope it stays that way, because the whole has burdened me enormously), in Germany have only 2 people found in similar situation with all goes well so far. I wish you all the best and will keep this forum in mind.

Hembsy and others just signed me in extra to write the post here because your very, very rare situation fits almost 100% to mine. Sorry for bad english needs to work through google translator. Coming from Germany am 31 years old in August 2016, a 12 x 18 mm lesion would really be found by chance. Lesion is in the island region (temporal lobe), cystic character has no contrast-absorbing. Have and did not have any symptoms in this MRI should be made of Halz spine but have made a mistake of his head. It was then recommended clearly "Wait and see" Last MRT 08.2017 Without change. Now comes on 08.2018 also MRT. Second opinion neurosurgeon Wait and see neurologist definitely do nothing. All 3 suspect me also DNET / GG and say all 3 is probably innate and see no need for action and say very carefully that it has a good prognosis (hope it stays that way, because the whole has burdened me enormously), in Germany have only 2 people found in similar situation with all goes well so far. I wish you all the best and will keep this forum in mind.

Ohh Sorry for the double post and the weird background color, it has been copied over from google so over

hello georg
the last neurosurgeon i met, told me for now no surgery. but they really dont know what it it till they'll take it out.
but i took all the exams and they said: suspected low grade (dnet , ganglioglioma) and maybe astrocytoma.
they are buffled due to the fact that i too dont have symptoms.
mine is cystic too
ill defined borders, 
2,5 cm
no enhanchement
at the secod rmn it wasn't changed.
ct scan sowed no calcification.

i met 5 neurosurgeons, 2 neuroradiologict, 3 nurologist
is really scary living with question marks

 let me know about you
bests

Hello,