Glioma - new diagnosis

FormerMember
FormerMember
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Hi, I'm new to this group and I wanted to ask whether anyone else has had a similar experience to me. I'm a 34-year-old woman and in late January I suffered a seizure which involved loss of consciousness and fitting. I was taken to hospital by ambulance, they couldn't find anything to explain it, and the neurologist I saw as a follow-up thought that it was probably a dissociative seizure, which I think was probably influenced by the fact that I have suffered from severe depression and anxiety, which comes and goes, for a long time. He sent me for an MRI scan, however he didn't seem to expect it to show anything. 

But I was called back for a re-scan, which involved having dye injected into my blood, and I was asked to attend a consultation with the same neurologist the following week. He told me that it turns out I have a low-grade glioma and it is likely to need brain surgery for a biopsy. He also prescribed anti-convulsants to prevent further seizures. 

My case is going to be reviewed by specialists next Tuesday and I will be called for a consultation following this. I don't yet know what area of my brain the glioma is in, or what specific type of glioma it is, other than that it is low-grade. 

I know that this all suggests a good prognosis, but I am very nervous about the idea of brain surgery. 

  • Hi MsVanya

    Welcome to the forum that no-one hopes they will need to visit. 

    I woke in hospital after a massive seizure. I was kept in for 11 days as something showed on scans but they were undecided what. Eventually they decided it was a blood clot and I was discharged with warfarin. Several months later I was told it was a low grade tumour. That was in 2013. Since then I've had 2 surgeries. After the initial seizure I did not have any more until several months after the first op. At that point I had to start to take anti-convulsants. I've not had a full tonic-clonic seizure since, I think, 2016 so its well controlled. I found the thought of surgery was worrying but the reality was it was not so bad. I've had operations on my knees which took a much longer recovery time and more pain, so I've got something to compare it with. Being apprehensive is totally normal as is having lots of questions about what is involved. 

    I'm happy to answer any questions you may have, but you might want to see your consultant first. I can only give you my personal experience and it may be that because of where the tumour it is not relevant to you. Either way, feel free to get in touch.

    Best wishes for now

    Tracy

  • FormerMember
    FormerMember in reply to TracyP

    Hi Tracy, 

    Thank you so much for your response, I'm glad to hear that your seizures are now more under control. It really helps to hear about your experience. Once I know more about where my tumour is, I'll hopefully be able to get a better sense of what to expect following the surgery. It's very good to know that in your case it wasn't as bad as you feared Slight smile