suspected mesial temporal ganglioglioma

while i know that MRI can not proof the type of tumor (nor the grade), I dont buy the logic to make 100% what it is via surgery in our case. Reason: a bubbly, cystic tumor that takes no contrast, has not grown in 8 or more months, is located in temporomesial temporal lobe (classic location of DNET/GG) AND does not cause symptoms is very likely a DNET or GG. waiting another year and doing another MRI can further help to establish this - if it does not grow, it is not a LGG (astro, oligo). if it grows, its a different story. 

just my perspective, of course. you have to be able to live with this (vs worry all the time), should you not do surgery at the moment. I find that I can very well but everyone is different...

Best

im stil waiting to receive my file. because i took some memory test and functional mri.
the neurologist told me me in october that they are for surgery, because the outcome is better. but hey, as you told i dont have symproms. nor seizures etc.
my family dcotor is not for the surgery right now.
all the neurosurgeons are confused as i dont have symptoms.

Hi there,

I was on the internet trying to find someone who had similar and this came up so I hope you don't mind me adding to the conversation?

I had an MRI scan 4 years ago now for pain and symptoms my neuro thought could be MS, and was told I didn't have MS but FM but an incidental finding was a cystic lesion in my left temporal lobe.  It was an MRI and then with contrast and they said it looked to be benign and that I should just carry on my life and not worry about it.  Easier said than done but I do try.  They didn't give it a name but said probably there since birth, and it sounds much like this.  I saw the pictures, it is the size of a plum, so quite big, but they consider none of my problems are connected to this.

2 years ago I started getting headaches and was understandably worried as I know there is something "in there" I had another scan and was told not to worry.  Should add I am now 52.

But now I get worse headaches and sometimes my head hurts to touch, also I have breathing restriction in my left nostril.  I don't like to go back to docs and say as they always just say not to worry, but seeing on here others are still watched yearly, they never said anything like that to me and I seem to have to beg to get another test.  Would you think I would be in my right to ask for another to see as although maybe an op would not be possible, I think I would want to know and I get panic attacks that don't help.  I feel I am being paranoid if I ask again or would others out there feel the same?

Thank you 

Hello Zanna

I am sorry to learn all that you have gone through. You are certainly not being paranoid. I think most of us here might feel the same. Frankly I’d go back and get reassurance on the various symptoms. I’d mention the pain to the touch and the blocked nostril. The latter may well be unrelated as you really can have more than on thing going on. You could have a sinus or have polyps problems, all of course unrelated to your earlier symptoms. Even if it all adds up to nothing, that proper reassurance will let you get on with life, without worry.

Best wishes

Brian

Hi there

I would think of it as follows: 

• definitely get regular (e.g. yearly) MRIs for your cystic brain lesion - even if it is benign, you should monitor it on a regular basis. It is surprising to me that you have not been offered this, and suggests to me that you may need to seek other experts, esp. ones with a neurology/neurosurgery specialization. 
• your symptoms may or may not be related to your brain lesion - but either way, I recommend you get regular MRIs for your brain lesion
• regarding your symptoms, you clearly should seek professional help to figure these out - if only the reduce anxiety and to hopefully find a solution

I honestly think you should not hesitate to seek help, doctors exist only for one reason: to help people suffering from health issues - thus I recommend you are pro-active and even pushy about getting the appropriate help. getting regular MRIs to monitor a brain lesion is the absolute minimum you should ask for, as it is the standard approach for a suspected benign brain lesion. If there is growth in your lesion, you dont want to miss it. 

hope it helps

good luck to you

hello Hemsby2008 
i went to the neurosurgeon from the neurological hospital

he told me:
he is for the surgery due to the following fact:
i can wait is not and emergency.
the thing is really old and is a lot of time is in my brain,
my memory test showed:
cognitive im ok
visual memory under the average and same the linguistic memory.
the thing is supposed a low grade glioma, I or II grade.
they dont know so they want to remove it because the outcome i s totally different if they remove it now than remove it when is changing.
6 month are not enough to understand if si growing or not.

i really dont know right now.
surgery seem the only way, this is the second opinion and is the same
im wondering if i should ask for a third ahahahaha
cheers

HI there

i know this dilemma very well, though in my case it was only one neurosurgeon (of 4) that strongly recommended surgery. one said I am a 50:50 case (can operate, but no real emergency/necessity), one said "I would not operate this on myself nor on my wife or children", and one said "only operate if it grows" (as it would be grade 2 or higher). 

at the end of the day, in my mind at least, the conclusion is this: there are basically two - very different - scenarios in our case (which is a VERY rare case and so we dont really fit the statistics): 

1) we have a benign brain tumor, likely since birth, and through a lucky coincidence, the tumor does not cause symptoms. normally, benign tumors such as DNET or GG are discovered because they very often cause seizures. but if a benign tumor does not cause symptoms, it can only be discovered by accident - which is what happend in our and my case. the key point in this scenario is that the tumor may just sit there for another 40 years without changing at all - after all, it seems to be sitting there since 40 years (in my case 50 years) without doing any damage. 

2) we dont have a benign tumor as MRI suggests, but rather a grade 2 or higher glioma. in THIS case we def. need surgery. BUT in this case MRI would show growth. 

thus, at least for me, the conclusion is to find out whether it is 1) or 2) by getting regular (in my case yearly) MRI scans. as long as there is no change, and as long as i have no symptoms, i simply dont see a reason to operate. of course I could have bad luck and there is growth in between MRIs and then the tumor will be larger and the emergency for surgery will be high. this is the risk i am willing to take. 

it is a very difficult decision, either way. 

good luck for you and this very difficult decision (either way...). 

thanx for the reply i Totally agree.
the neurosurgeon told me i can wait from 6 months to 1 year but not more.

he todl me that my hippocampus and amigdala are gone due to the tumor.
plus he told me that now they consider ganglioglioma as grade 2.
so they are for removing it.
so difficult to decide
thanx again

why do they think it is grade 2?

most Gangliogliomas are Grade I.

the neurosurgeon told me that new protocols are for surgery. just because through images they cannot confirm if is a grade one or a grade two.
they told me that i can decide to take a mri every six months or once a year, but in case the lesion change is really a mess.
so he said is better to take it off right now that is quiet.
is not urgent but i dont have  sleep on it for sure .
so years ago they were on wait and see, now they are for surgery becuase the outcome on long term is better.

both neurosurgeons told me the same things.