How long have you/your loved been diagnosed with a brain tumour?

[Shannon_TBTC]

What was the trigger for diagnosis and how did this impact your day to day life? It would be great if you comment below sharing your experiences with others!

[Tumo Pioneer]

I was feeling strange for 6 years, and told it was menopause, just weak, light headed, tired etc. One morning I realised my vision in right eye was blurry and I couldn’t see the right colours, so I went to optician same day, ( no appointment just went in for advice). They did loads of tests and told me to go to hospital 8.15am next morning (August 1st 2016). 1st craniotomy followed December 16th 2016. Been on watch and wait since March 2016 when a new nodule was seen on MRI. Because it started to grow 2nd craniotomy due March 27th 2020, then Covid came so cancelled but Neurosurgeon wanted a new MRI which showed 2 tumours so 2nd craniotomy went ahead March 25th 2020. MRI next Friday to see what’s going on. 🤞So in total been diagnosed 3 years 8 months.

[Rammy54 Pioneer]

I noticed Iain was getting forgetful and a bit confused over about a week. I couldn’t get him to see the GP has he point blank refused. His dad had dementia and I think he thought he was getting the same. One night in the pub he “lost time” didn’t know where he was or what he was doing. Next morning the left half of his face was slightly dropped and I thought he’d had a TIA. Dragged him to the GP and he also thought mini stroke, immediate appointment at stroke clinic and 10hours later diagnosis of a mass on left front temporal lobe. GBM4 diagnosis 10 days after they removed as much as possible.

My diagnosis came 3 weeks after Iain’s funeral after 2 years of dizzy spells, hearing loss and multiple GP visits where they said vertigo, sinus and laterally stress. Fortunately my tumour is an Acoustic Neuroma which is benign so on a “watch and monitor” regime. Even though I know it’s not the same as Iain had, once they say brain tumour, the fear is with you every day that it will develop into something else. Logically I know it won’t but you still fear it. Makes it worse after nursing Iain through his brain tumour as then you know what could happen to you.

[astro-means-star Pioneer]

For me it was increased frequency, length and intensity of migraines ( I lost multiple weekends to lying in a dark room and sleeping), I also had a vertigo rush like feel from my neck to front of my head when i changed position - this then led to large internal banging.

Symptoms: change in migraines length and frequency, light sensitivity, head rush, banging sensation, occasional nausea.

Made an appointment with my GP, they sent me for MRI, spinal tap and general tests straight after that appointment. Tumor was found so same day transferred to a specialist neuro hospital. First of many surgeries followed a day or so after.

Living low grade now but during hospital stay i had a couple of complications (namely infection) and several months post op had a few sticthes that didnt dissolve cause issues, one cause a leak (washout surgery), another thankfully has just surfaced and come out on its own accord.

Diagnosed May 2019

[SJa2020 in reply to astro-means-star]

Hi Astro m-s, what’s the rush you mentioned. I get something like a rush on my left from back of head to top along the back of neck & along the artery/ nerve ? & yes a bit later banging & pain in head around ears. Is that similar? Did they say why it happens? Just recently can feel / hear the pulse Or a throbbing in my ears too from where it hurts. Any ideas?

[astro-means-star Pioneer in reply to SJa2020]

The rush for me was quite literal. The tumour was causing flow problems for the csf, so essentially my tumour was blocking the csf flow. Body reacted by producing more csf to pump it roun. Post tumour debulking i have hydrocephalus and a vp shunt.

The banging for me in this instance was a localised internal pounding directly on top, kind of like I had been hit from the inside if that makes sense. Thankfully that didn't last too long.

[SJa2020 in reply to astro-means-star]

Hopefully for you, it sorts itself as surgery done so csf can balance itself out gradually.

Hope my ones aren’t like yours as see no signs of it being sorted soon! Grr trying to get mri done pvt but so slow to get gp referral & all admin stuff! Grr.

It’s bad enough being ill having to chase each step is worse! Patience is a virtue to practice I keep telling myself!

[Sunsets90 Pioneer]

I was diagnosed 7 years ago, following a persistent headache that could not be alleviated neither with over the counter meds/ prescription ones. I was diagnosed initially with TN, and the tumour was found incidentally via an MRI.

[Wolfie04]

Hi. For months prior to the diagnosis I was suffering with daily headaches. Only in the mornings though. I thought it was stress. I had a fair amount of stuff going on at the time. I’d had a few falls but I did have a reputation for being clumsy. It wasn’t until I was observed by a family member that I thought maybe I should go see doctor. I was walking badly. I suffer pernicious anaemia so was thinking maybe I’d got run down. Never did I think that it was anything serious. I’d been making some mild blowing life changing decisions at the time and just never thought it was anything else. I did six months previous have a doctors appointment and I told him I was waking up to these crushing headaches! His answer was buy a better quality wine and here! Let’s increase antidepressants. I’d been on them for a while. I just wasn’t feeling well and usual doctors questions are menopausal, vino headache or depressed! I didn’t argue with him and took the advice and scripts. It wasn’t till I saw him after I was rushed in to hospital by a clinic that I’d gone to for a scan and had discovered a rather large tumour. They’d called an ambulance and wouldn’t even let me drive home first to get some things. From that day to this I’ve been living with post surgery issues and yearly mri for any regrowth. I’d thought by now I’d be getting better and with changes I could live with this but my reality is I actually feel worse now than before diagnosis. Two brain surgeries have left me a shadow of my former self. I don’t recognise the person in the mirror. I’m tired of the meds. Tired of the pain and feel I’ve lost all credibility. I can’t drive. I can’t work. I try to look after myself but I’ll admit my standards have slipped. I don’t want to admit it but it’s just getting harder to survive. Bad sleep. Afternoon sleeps and fatigue is still not being sorted. I did have the opportunity to tell the doctor that gave me the wonderful advice to buy only expensive wine that it was a lame comment and if he’d sent me for a scan I’d have been diagnosed one year earlier. I’ve heard that Brain tumours are usually found if the patient goes into the surgery/hospital environment for something else, or the tumour starts showing, itself like me and the shock is still very raw to me! I have to admit that even now I struggle with the comprehension that this has happened.

I’m living with decisions that I made before, during and after all this. I blame all my questionable decisions on my tumours! Can they really be so destructive? Can they really have such an input on our decision making processes? 😰

[Accorn123]

My trigger was I had no feeling in my left side of my body .for about two wks .