Hello and thanks for posting

Some very slow growing brain tumours can be present for many years, even since childhood without causing obvious symptoms.

DNET's ( dysembryoplastic neuroepithelial tumours ) are known to grow very slowly and often first show themselves through seizures, so it isn't impossible that your symptoms could be related to the tumour. Many people only discover them in adulthood even though the tumour may have been there for decades.

I imagine your neurologist is suggesting you take anti seizure medication as a safety measure even though they aren't certain that the tumour is causing the seizures. It's difficult to decide what you should do when different health professionals give different explanations. But as you probably know, only you can make that decision. I think the decision would depend on how much the seizures are impacting your life. If you think it would help to get more clarity on what you might do, do talk to your neurology team again.

I hope this is of some use. Give us a ring if you would like to talk anything over. The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

Kind regards,

Celene

Thank you so much for your response. I found this very helpful information, I will give you a call as I have other concerns about travelling to Australia – thanks!

Hi,

I’ve just been told I have a DNET, likely been there since birth but have started to have episodes age 48. Looking back I’ve probably been having focal aware seizures for around 4 years. I’m due to see a neurosurgeon in January to discuss next steps. Mine is in my right temporal lobe. I get smoke smells, tingling and crawling sensation on my face and I also get impaired awareness seizures where I start to stutter my words, lose ability to speak my mind goes blank I have no internal monologue or thoughts I blink rapidly and feel confused when I come round and occasionally cannot understand speech! I’m not allowed to drive at the moment either but I have been looking into why things can show up later in life and hormones can play a big role, stress and age, as the brain compensates for the DNET then as we age it cannot do the same job as it used to!

I wanted to join just to reply to you as I cannot find anyone with what I have! 

I was referred to have my MRI as I suffer with migraine with aura and they started to increase and change (but it was these seizures) on top of my migraines there is an overlap at times with symptoms. 

hope you’re well and had a good Christmas x

Hello!

Thankyou so much for responding. I'm in a similar situation to you, but I've been told absolutely nothing by neurologists over the years! They keep talking to me like I'm a mystery and they've never seen this before. It has been suggested that I might have migraine with aura, but I don't have any headache so it can't be that but it might be! Who knows! I have the same seizures where I lose the ability to speak without stuttering and forgetting words, I can't read and have very little memory for about 5 minutes and then I come back from it, exhausted for the rest of the day.

I feel really let down by the hospitals and medical staff. I only found out recently that I had a DNET, but for over 10 years they just told me it was a scar.

What you've mentioned is very interesting about stress and age, I've never been told that before. I hope you have more luck with your medical team than I have.  

Kind Regards

Nickee