suspected mesial temporal ganglioglioma

Former Member over 8 years ago

80 replies
32 subscribers
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hello everybody,
im new to the group and english is not my first language, so sorry for the mistakes.
i've been diagnosed of a ganglioglioma (low grade glioma) in my right mesial temporal lobe.
it was discovered by errors, because i bugged my doctor for a rmi.
i had a really strange flu, tinnitus and a kind og ghost image problem in my right eye.
so i had the scan february and then one with contrast liquid in march.
I went to the hospital of my town where neurology is a must and they told me take it easy is a loww grade tumor, see you in six month
so i went in another town to a super brain surgeon , and he told me is 99% a ganglioglioma or dnet.
so wait 6/8 months and repeat the mri with contrast and enjoy the summer.
last month i went to milan , at neurological hospital, that is a real super place for all this.
i takled with a neurooncologist, neuroradiologist and radiotherapyst.
he confirmed me the same thing and asked me if i wanted to be followed by thei team of specialists.
i said yea.
they called me after a month yesterday.
they discussed my case and they wnat me to spend some day by the center to check some tests, because i should have symptoms(seizures) that i really don't have.
repeat the mri and decide what is going to happen. if i have to take surgery or other therapy.
they told me nothing is changed from the last month. but the place where i have this lgg is really serious.
im totally scared.
im really scared.
bests

Former Member over 7 years ago in reply to Georg87

hello Georg
mine is in the right ippocampus (mesial temporal region) shot memory place.
yeah they told you the same thing as me.
did you take the magnetic resonance every 12 months?
i took the frirst in march 17, then october 17 and wasn't changed.
im going to take the next in september / october.
i always had headache since my childhood.

im trying to find some stuff online about this kind of tumor but is really difficult

best regards

Georg87 over 7 years ago in reply to Former Member

Hey, MRT distance I had only 3 months then 8 months (exactly in 1 year after the discovery so on 08.17, then yearly) next is on 21.08.18.

I think that this tumor is rare because maybe it rarely causes symptoms, people live their life for life without knowing that they have this thing - no complaints - no MRI -> no discovery. In adults, DNETs are usually found by chance because they grow as well as never and rarely cause symptoms, compared to other types of tumors, important is that it's really DNET's, I decided that it's a DNet and that's a lot easier to live ... and if it is not so then you can not change it anyway ... but many criteria speak for dnet: cystic character, no symptoms, chance finding, no contrast agent submission, location (island region Left side is almost head middle with me), AND ALL IMPORTANT no GROWTH.

So it speaks more for it as against me and also you de that it is DNET, so why then think of the negative?

Best Regarts

Georg87 over 7 years ago in reply to Georg87

Hey, wanted to report, today had MRI - without change no contrast medium enrichment. All very well and the next only in 1.5 years now.

Hope it gives you some courage

Former Member over 7 years ago in reply to Georg87

hey Georg
this is a wonderful news!!
im so happy about it
you have to party
i have my resonance in september the third (after 10 months from the second) and im really scared about it.
i was looking for answers on the web, and i was looking because mine is ill defined and bubble cystic appearence. no enhanchement
so they dont know if is a ganglioglioma (propably) dnet (not because i should have epilepsy) or astrocytoma.
we'll see
bests

Georg87 over 7 years ago in reply to Former Member

Everything will be alright, if you have dnet, you do not necessarily have epilepsy. It is celebrated properly :)

Former Member over 7 years ago in reply to Georg87

thanx georg

ill keep youupdated
and cheers from my heart
bests

Former Member over 7 years ago in reply to Georg87

hey everebody
im going to have the magnetic resonance tomorrow morning
and i'm really really anxious about it
are almost 11 months i didn t take a scan.
i hope everything will be fine.
last neurosurgeon wrote:
suspected ganglioglioma, dnet, astrocyroma.....

damn im scared
what about you?

best regards

Former Member over 7 years ago in reply to Former Member

hi there,

sorry to hear about your anxiousness (though i understand of course)

do you already have results?

in my case i had another stable MRI this july, and next check-up in one year.

by now i keep forgetting about this "thing" for weeks which is really great, have my old life 99.5% back.

crossing fingers that you can experience the same

good luck

Former Member over 7 years ago in reply to Former Member

hey
got the results today

"NO CHANGES"
stable
so what do you think about it?
do you think is a dnet? or ganglioglioma?
i mean is this thing in my brain since my childhood?
ciao

Former Member over 7 years ago in reply to Former Member

hey there,

great news! diagnosis is of course still uncertain without histology - BUT: this strongly indicates that the hypothesis of DNET/GG is correct. same with question how long you have it: uncertain BUT likely you have it for a long time.

remember: LGG (i.e. Grade 2+) grow in average 4mm / year. yours has been stable for more than a year now (even 2?).

also: we have this thing in the most epileptogenic zone in the brain (i.e. Hippocampus/Amygdala/Uncus). Thus changes / growth would be noticable via onset of seizures. the fact that you dont have seizures (or any symptom) is another indication that this thing is inactive.

long story short: i think you need to make a decision now:

1. you accept it is a benign thing that you have for a long time and that is inactive - and thus you start to return to your normal life

2. you cannot accept or tolerate (emotionally) living with this thing and the uncertainty of not 100% knowiing what it is. then i would recommend surgery.

I have chosen 1) and it works for me. but everyone is different.

good luck to you

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suspected mesial temporal ganglioglioma