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Just wanted to share my experience in 2022 relating to my diagnosis and removal of a brain tumour in case any riders are experiencing the same symptoms that I did. I wish that I'd seen a post like this back in March when my GP was incorrectly telling me the symptoms I presented suggested I had long-covid and GERD.
My symptoms came to the fore and started to impact my life after a bike ride on the transpennine trail, Peak District. Whilst decending on loose rocks, I experienced what I can only describe as what felt like a hard object banging my brain inside my skull. I called it 'Brain Rattle'. It was painful whilst riding but gradually ceased after I stopped. Days afterward my symptoms arose and increased as the weeks went by. Severe fatigue, headaches, low energy, struggling to balance, dragging my left foot when walking and writing gobbledygook emails that no one but me could understand. Eventually I also struggled with depression. Then one day in March I went for a ride, hit a drain cover, got a flat and when repairing, experienced what I now know to be a seizure (odd smells, tastes and vision). I thought I was going to die tbh. Anyway, with getting no acceptable diagnosis from the GP and the symptoms worsening, we went private and spent £400 for an MRI brain scan and consultation. Lo and behold in May the result was a diagnosis of a meningioma brain tumour behind my right eye. Apparently this had been growing slowly for 10-15 years and in its current hard state, had been banging against my brain during rides and generally putting more and more pressure on my brain when not riding, slowly worsening my cognitive behaviour/performance. Within weeks the NHS Neurology dept at Sheffield Royal Hallamshire kicked into action and I had the tumour removed on 16 June and was back at home 2 weeks later. I started riding again about a month later and went back to work in October and I'm enjoying like more than ever. So the advice I'd have given myself back in March would be to not ignore the 'brain rattle' I experienced when riding rough terrain, not to put it down to old age or a simple headache but see your GP straight way and get my cognitive skills checked out and perhaps see if they believe a scan is required. I don't want to worry anybody, my type of tumour is rare (c2000 in the UK at any time) and the prognosis can be very good, and the NHS were and continue to be truly amazing. But riding your beloved bike can give you clues about your health and shouldn't be ignored. BTW I'm male and 55 yo. Also, the BrainTumourCharity is an amazing resource if you have concerns.
Excellent post to be honest.
Even more so as my Mum got diagnosed with a Brain Tumour last August. Lost vision and dizziness in right eye, so went for a CT scan and they found it.
Has had multiple scans and is now listed for removal sometime this year. She’s 62.
Luckily the lost vision was diabetes related and has now subsided and she can work and drive till she has the tumour removed.
Good luck in your recovery journey.
Wow, I'm glad that I read beyond the thread title, what an excellent outcome. It's good to hear a positive story like that.
And yeah, always worth getting things that feel wrong and very different checked out properly, even if it's more than likely nothing serious.
the NHS were and continue to be truly amazing
Apart from the fact that you had to go private in order to get a diagnosis due to the incompetence(?) of your GP? I wonder what happens to the person who can't afford the 400 quid scan...
Thanks for sharing though, certainly an interesting story. Best wishes for rest of your recovery.
Great to hear you've had a positive outcome, and really useful to share it.
A young lass at our club is in remission from a brain tumour diagnosed at the start of lockdown. She destroyed my best time on the boxing day hill climb, think she's 15 now 🙄
Nhs were amazing and I was on the waiting list for nhs scan but I could afford to go private and my symptoms were so severe that we decide to go private. Best money I’ve spent and I was amazed how the public and private sectors are so well joined up. Sometimes the neurosurgeons work in both sectors. For those who can’t afford, then suggest they seek advice from the brain tumour charity because that’s precisely what they’re there for.
Nhs were amazing and I was on the waiting list for nhs scan
Do you know how long the wait would have been otherwise?
Hi. I was put on the Neurology waiting list in April and still hadn’t heard anything in August. By that time surgery had completed so I was likely removed from the waiting list.
That's one hell of a journey you've been through there op.
I'm really chuffed for you that you've had a good outcome from the surgery and I hope you have an amazing year of biking and of life in general!
Also do check out Brain Tumour Research as they are all fabulous, and yes I am biased as I've had suspected brain tumour, lost many family members to brain tumours and I am absolutely delighted to read the story and happy outcome (although must confess not surprised by GP).
If you think you have any issues then do some homework and talk to one of the GP, charities and get it checked out sooner rather than later.
If you do want to give back to those charities too they need every penny they can get.
James
Really good to hear you're doing well.
As a doctor, it's pretty worrying to hear a GP disregarding that story of headaches with abnormal neurology. But I guess you just have to hope the story at the time wasn't so clear / they were having a bad day.
If anyone is worried about this type of thing, I really recommend this website, good for kids, teenagers and adults.
Thanks. I’m not saying the GP practice was incompetent but it was my wife and Googling that suggested that the issue was neurological and in hindsight, knowing what the symptoms suggest now, I believe the GP/Registrar should have come to the same conclusion before we did. I wrote a no-blame letter to the practice pointing out the improvements I think they should make and their response demonstrates they’ve learnt lessons so I hope my experience won’t be repeated by the next patient presenting cognitive issues. I miss things at work and I’m sure we all do. I thank my beautiful wife for seeing it and booking me in for the scan. I say again, the treatment and care I recieved from the NHS was amazing and everyone went above and beyond what derisory pay and quality of working life they put up with.
Wow!
Thanks for posting, OP.
Pleased to hear it sounds like you are on the mend & took the initiative to get a private scan.
Severe fatigue, headaches, low energy, struggling to balance, dragging my left foot when walking and writing gobbledygook emails that no one but me could understand.
These symptoms ring bells!
My mum had similar, including sending me rambling texts that were a bit bonkers. She thought she had a bad cold, she was shuffling a bit and a few people noticed, but thought she'd be having an afternoon tipple (she was in the WI and would often go out for boozy lunches and the like.) She got a bit forgetful and a bit distant, but just said she was run down.
Then on boxing Day 2016, she was clearly very distant and forgetful. She tried to cook a pork joint but didn't take the plastic wrapper off. I thought maybe she'd had a TIA or similar so took her to AE.
She was assessed and referred to memory clinic OPD, probably senile/Alzheimer's. I was sceptical as it was a relatively acute onset. But the AE doc wouldn't have it. Discharged.
Next day, my sister arrives who lives away, so she noticed a big change in mum (which had seemed gradual to me seeing her more often.)
Back to AE, CT scan, inoperable brain tumour, dead 10 days later.
Apologies for the blunt, bleak post. Don't need sympathies, just want to make the point that symptoms can creep up and easily be mistaken. With hindsight, we could've jumped on it months earlier, so many people said "I noticed this, I saw that etc" but it was easy to brush off. And don't necessarily accept the first medical opinion!!
OP - I'm glad your outcome is good!! 👍
Sometimes the neurosurgeons work in both sectors.
Pretty sure they all do, at least a majority. What you're paying for when you go private is quicker service and a nicer room if you need to stay overnight. In terms of medical care I'd rather be in an NHS hospital, as they'll have all the emergency stuff there in the same building ready to go, just in case something goes wrong
I was put on the Neurology waiting list in April and still hadn’t heard anything in August.
It's crazy, with the symptoms you describe, it's a clear urgent neurology referral, and not in hindsight either. Does the two-week cancer wait target not exist any more? If it turned out you had something a bit faster-growing, that time gap doesn't bear thinking about.
These days though, you don't know whether it's the GP not picking up on it or communicating it effectively, or your local neurology service being utterly overwhelmed.
Requesting that this thread doesn’t turn into a public v private debate. The point I’m trying to get across is for those that are in the shoes I was in at March 22- no certainty of diagnosis and symptoms that prevented me from earning a living and putting so much stress on the family. Listen to your body when riding as that’s a time when its cognitive and neurological skills are being maximised. Listen to the signals and get them checked out.
Spot on Martin. Mixture of all those I think. Luckily wasn’t cancerous or fast growing. However I’m told type 2 meningioma can recur.
I think meningioma's are pretty hard to diagnose until they reach the point they're causing pretty major problems, and you eventually get referred for a scan.
For those wondering what they are, they're a typically slow growing benign tumour in the brain lining, which slowly grow and squeeze/push the brain to the side. They're not really a brain tumour as such, as they're out with the brain.
My mum had one the size of a small grapefruit removed 19 years ago, after several years of worsening trigeminal neuralgia in her face (where a nerve touches a vein, and results in shooting pain as the vein pulses against the nerve).
It was only when she started getting dizzy spells, the GP referred her to the local weekly neuro out patients clinic, where she was then referred for a MRI.
It was supposed to be a 6 month waiting list with a follow up for results, but she had the scan within 2 months, and a consultant was called to review the scan immediately as soon as they seen the size of the tumour. She always maintained the consultant seen something in her eyes, as he said he was referring her as soon as he checked her eyes, and it was more serious than he let on, given how quickly she got the scan appointment.
The consultant wanted her in the following week for removal, but she refused to have it removed until after my sister's wedding a couple weeks later. She ended up having the operation 6 weeks later and carried out by the head of department, as it was one of the biggest meningioma he'd seen.
And despite how rare they are, my brother's girlfriend's mum had one removed a few years later. Her main symptom were eyesight problems which suddenly worsened over a few weeks.
IIRC it was the optician who referred her for further checks, which turned out to be the tumour pushing against her optic system.
Requesting that this thread doesn’t turn into a public v private debate. The point I’m trying to get across is for those that are in the shoes I was in at March 22- no certainty of diagnosis and symptoms that prevented me from earning a living and putting so much stress on the family.
Your personal decision can't be faulted in any way.
Update- 18 months now and I’m good. Back to work 4 months after surgery and riding. Message I want to get across is about feeling something might be wrong with your cognitive skills and/or a throbbing in your head when riding. Don’t put it down to fatigue or dehydration- get it checked out. At least have an eye check because opticians are on the look out for tumour symptoms and can refer you on.
Healing vibes OP.
"with getting no acceptable diagnosis from the GP"
This is such a big problem nowadays. Some GPs feel more like financial gatekeepers than actual doctors. You often have to play the "GP Merry-go-round" game until you get somewhere.
Wow! Great news! Amazing really.
So many just accept what the GP says without furthering it despite having a 'knowing' that things aren't right. My mum (a retired A&E nurse) went through the exact same thing and was fobbed off despite her experiencing pretty specific symptoms of a brain tumour. She ended up paying privately for a scan too.... and she had it removed within weeks. The GP kept telling her it was Vertigo and refused to discuss further despite her arguing the symptoms and the credibility of having 30+ years experience in nursing.
Similar experience to lamp above. Back in the lae 80s my mum (45 at the time) had been having bad headaches for ages (years?) but her GP kept telling her it was only middle age stress or something (fobbing her off really). Then one day we met the ambulance while on the way home from school. She had collapsed at home and was rushed down to Cardiff where a scan revealed a brain tumour and they operated the very same day. Following radio therapy and chemo she did have 2 more years before it came back and took her from us far too young.
Glad to hear from the OP that his tumour appears to be benign and the prognosis seems excellent.
My dad died of a brain tumour.
Had severe migraines for years and on the run up to his death the GP diagnosed bells palsy.
It was only when he collapsed and was bluelighted to hospital that it was diagnosed.
I dont think an earlier diagnosis would of potentially saved him as it wasnt operational.
I'm glad you're back and healed up well.
Thanks for posting, brain tumours are often much worse outcomes so delighted that you have come out the other side.
A junior rider I know was diagnosed with a brain tumour at the start of lockdown, initially with a very poor prognosis. Tough couple of years for them and their family, but back racing at national level and recently made it to the GB development squad.
A reminder to get any worries or concerns checked out sooner rather than later.
thanks for posting
I wasnt aware of the symptoms of brain tumours and want to know more
Head aches, pressure in the eyes, instability, fits, cognitive changes and even nausea you can find a much better explanation and a tone of good research and info here https://braintumourresearch.org/blogs/information/brain-tumour-symptoms
I've been too close to this too many times, so once every couple of years I ride a stupid ride to raise cash for them as Brain tumours kill more adults under 40 than any other cancer and they need all the funds they can get. Next year is my next ride for them, training already started.
If I can help, point you to more info, chat whatever, holler anytime.
Like some of you my dad died from a brain tumour.
Initially we were pushed away by the medical professionals saying he was doddery etc. because he was blind. He was a bear of a man who smashed out massive walks daily and swim a lot too.
we obviously knew otherwise and pushed back. Finally got a scan and then the worst news.
He managed two ops and two years which was incredible.
i can’t believe how many young people it kills, at least my dad made 69 which was still way too young.
**** I miss him. And now I’m blubbing stood boarding my flight home from China. <br />(buying loads of Lewis brakes…jokes).
Glad to hear the OP is fit and well 👍
Like some above it seems that tumours are hard for GPs to diagnose, bitd my sisters friend was marked down as a hypochondriac until she met a doctor at a party who wrote her a note to the local hospital insisting she shouldn't leave until they give her a scan & yup she had an operable tumour & is still fit and well many years later.