Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

Possible tumor ( I have Papilledema)

Posted by

Hi their trying to cut long story short just looking for some advice support or a chat I have minimal family , I’m 27 years old I had a seizure back in feb went to doctors for other test results for heart as I have heart issue and mentioned to her symptoms iv been having well over a year that over the last months that we’re becoming increasingly worse sorry for TMI but pain in head loss vision like a veil over eyes when pooping and laughing basically anything that puts pressure in head so she looked in my eyes along with two other of the practise doctors says I have quite substantial swelling something called Papilledema so I was diagnosed with this Bach then I was admitted to hospital that evening I discharged myself two days later as I was just terrified ever since I have had issues and I’m under neurology now and been seeing someone every 2-3 weeks I just had MRI today and I’m awaiting about a biospie my symptoms especially last two weeks have took turn for worse every time I bend over or down my vision goes in my left eye and pressure feeling in head and even if I’m shoulder level head down it goes these episodes lasts seconds at a time my hands now while pooping go extreme pins and needles as soon as I’m passing movement within seconds only in hands their concerned as swelling is getting worse rather than better mri done today said il be back next week hopefully for results or someone call me they have also signed my off work more to do with symptoms my memory is also terrible just now not sure looking for anyone maybe gone through similar or just a hand hold thanks xx

Posted by

Dear , I cant offer any advice or say I have any experience of your symptoms but I hoped I could give a virtual hand hold. I remember what it was like for me waiting for results, biopsies and scans. You sound like you are coping bravely with some awkward symptoms but don’t want to feel quite so alone while waiting for what ever comes next and I recognise how discombobulating that can be, gosh where did that word come from. I said I couldn’t offer advise but I can signpost you in the direction of the Macmillan support line who are open 8am to 8pm 7 days a week on 0808 808 0000. I have found them friendly approachable supportive and informative, wether you need to chat through what’s happening just to get the feelings out or to sort through what action you might want to take next. 

I said hand hold in response to your last line but I think a virtual hug is in order


What is a Community Champion?

You can call the Macmillan Support Line on 0808 808 0000 (7 days a week, 8am-8pm) or contact them by email.