Meningioma advice

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Hi everyone,

This is my first post so will give a bit of background, I started having severe headaches in 2021 when I was diagnosed with COVID but they didnt stop after I recovered from COVID, I felt sick and struggled to eat and had periods where my vision was very blurred. I went to the GP and was told it was probably migraines(which I'd never previously experienced) they referred me to a neurologist to check it wasnt anything else.

The neurologist said it was migraines but he would scan to rule anything else out. I had an MRI done and initially was just told there was an abnormality in the thalamus and they wanted to rescan with contrast. I had this test and was sent a letter saying they didnt know what it was but it wouldn't be causing the headaches and that they wanted to monitor it to see if it changed. So I had MRI scans every 3 months for 9months. In this time I never saw the neurologist face to face apart from the initial appointment, he just kept writing saying no changes and I had to email to make next appointment, during this time the headaches remained everyday and were worse when I first woke up, but were less severe as I was prescribed propranolol, however I started having concentration and memory problems and problems with my speech, getting words in the wrong order or just completely forgetting words, I would email him updates when I emailed to book the next MRI but he did not seem worried. 

Then last month following another scan he wrote to me and said the abnormality in the thalamus has remained the same and the meningioma on the upper left side of the scan is the same size and neither of these things could be causing headaches.

This was the first I had heard of this and honestly made me feel quite alarmed. I contacted him and said I wanted a face to face assessment, which I had on Monday.

During the appointment I asked to see the scans, he had great difficulty logging into the system and when he opened them it was very clear he had never looked at them before as he couldnt identify the abnormalities for some time. He said he wasnt sure how big the meningioma is as it's not been labelled but said that means it's small. He said small ones can not cause symptoms, I've seen evidence online to suggest this is not true. He said the problem with the thalamus could be due to a stroke or could be a tumour but as it hasn't changed I shouldnt worry. He just casually mentioned that I may have another tumour then expects me not to worry. Is this normal?

He is convinced my symptoms are due to chronic migraines and was unwilling to discuss any other possibilities and when I asked why I would suddenly start getting migraines he said I've probably always had them?? The pain is isolated to the area the meningioma is located, on the top of my head slightly to the left but he said it's just a coincidence. He then said he would refer me to a colleague who he is 100% sure will agree with him but thinks it will help me to talk it through with someone else. I dont think he appreciated how much this is affecting me, I've had to reduce my work load at work because I cant concentrate and am making mistakes with my typing, writing the wrong words or missing words out, so have to keep checking over my work. 

Has anyone else had similar experiences?

Also unsure if this is relevant but I've also had a few blackouts, the first one was in 2019 and I fell down the stairs and sustained an open fracture of my leg unsure if that could be related to the abnormalities in my brain?

  • Hi Claire

    a warm welcome to the group. So sorry to hear about all that you have been going through.

    I'm supporting my husband through his stage 4 brain tumour journey so that's a whole different ball game but I have had my fair share of frustrations with consultants and scans. We went over 2 years without seeing an oncologist face to face or seeing the scan images. What we were always told was that the oncologist/consultant would get a detail report of the scan results  from the imaging experts. One of the oncologists we had a call with admitted he wasn't an expert at reading the scans which was a level of honesty I appreciated but didn't help paint the picture of what was going on. Perhaps as a start you could ask for a second opinion. Could the report perhaps be sent to your GP and that could be another route into an informed opinion.

    Not knowing is far scarier than knowing and a woolly answer is no use to anyone. I get it.

    I'm not overly familiar with meningioma but I found this link on the main website that might help

    Meningioma | Macmillan Cancer Support

    This is  safe and supportive space so I'm sure someone else will be along shortly to add their words of wisdom to this reply. 

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    for now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong. I hope you get some clarity soon.

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Thanks so much for responding, I know my situation could be a lot worse, it's just so difficult living with symptoms and uncertainty. I'm a single mum and I'm worried about my children, I think I will ask for a second opinion x