suspected mesial temporal ganglioglioma

Former Member over 8 years ago

80 replies
32 subscribers
171605 views

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 Former Member

im going to talk with the 3 neurosurgeon im in contact.
but i like the first option.
hey we should open a blog or a club to give information to other people in this situation
what do you think?

Former Member over 7 years ago in reply to Former Member

hey Hemsby
went to 2 neurosurgeon

1 told me he gives me another year then i have to take it off , i cant gamble with desitny
he told me , if is going to change is going bad , due to fact im over 40, and the place.
second neurosurgeon, told me i have to think about the surgery but i could take a mr in 10 months and see.
but he is for the surgery too.

im waiting the 3rd opinion
im really confused.

damn

i though to live taking scans, but tey told me that they want to remove it now that is sleeping. because of is going to change is to late to take surgery.

bests

Georg87 over 7 years ago in reply to Former Member

Hey, I just do not understand one thing, why do surgeons want surgery when there's no change and you're fine and you have no symptoms? This does not make sense, because Op is always risk.

Former Member over 7 years ago in reply to Georg87

because they are afraid it could change. and after the 40 years old if is going to change is going real bad and it could be too late.

im confused too

Georg87 over 7 years ago in reply to Former Member

I'm confused now. Never heard of the limit of 40 or 50 years that it gets bad afterwards or something.

Although I read a lot in German forum about brain tumors ..

If it is DNET, it remains unchanged even at 75 years and much suggests that it is DNET with you something like cystic structure and other things. And never heard that it is recommended to op with stable findings and symptoms free course

Former Member over 7 years ago in reply to Georg87

id like to have second opinion oustide my Country.
the thing is, to have a 100% diagnosis they have to take it out.
because it should be an astrocyroma.
and astrocytoma gets really bad when changes.
to them if is a I grade good they take it out and im ok for the rest of my life. if is a II grade , well we'll see

Georg87 over 7 years ago in reply to Former Member

It is unfortunately so that also Astro 1 also tend to recurrence and many cases unfortunately belongs in forum where it was after the operation on relapse astro 2, so with OP you did not win much.

Astro 2 is not mentioned now because this tumor grows for a year without treatment ...

Of course, you should regularly check and take care of yourself, but I would not let it in my head when I'm fine and there are no changes on MRI. But everyone has to know it for themselves.

All the best

Former Member over 7 years ago in reply to Georg87

what you mean with?
"Astro 2 is not mentioned now because this tumor grows for a year without treatment ..."
i like to think i will not take the surgery as i think like you about it.
thanx a lot for your reply
do you have references if id ask in germany for a second opinion?
a neurosuregon?

Georg87 over 7 years ago in reply to Former Member

Exactly, there is no talk about Astro 2, as there are no changes in 1 year.

Find it right to continue watching, contact with a clinic, I sent you by private message.

here is nice forum where much info can find. but in German

forum.hirntumorhilfe.de/

akist over 7 years ago in reply to Georg87

Don't want to scare anyone but there are plenty of astrocytomas and other gliomas that do not show any changes on yearly scans, yet, due to their nature they are guaranteed to grow and to mutate to become worse and worse. This must be the reason why half of the surgeons have recommended surgery. If you can catch the glioma very early you have very good chances. I suppose that is why, maybe, some of the surgeons want to err on the side of caution.

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suspected mesial temporal ganglioglioma