Primary Brain Tumor (Glioma)
Discussion
So I'm staying out of the 'Cancer-y' threads for now, as they wont pin that particular tail on that donkey until they have a bit under a microscope, but thought I'd crowdsource a bit of context and info on where I'm up to.
After a good few months of increasing symptoms which I'd put down to anxiety and depression (and then the subsequent side effects from the SSRI..) including left side weakness, occasional tremor, banging headaches and the odd visual symptom black/light spots, about 3 weeks ago I had a full blown seizure which resulted in a blue light trip to A&E where they stuck me in an MRI. Initially a 'mass' they've settled on a primary brain tumor in the region of 75x35mm which sounds... big to me..?
It looks like a grade 1 or 2 Glioma. The plan is to 'debulk' it via surgery in a couple of weeks. They won't know if its benign or cancerous until they genetically test it, but no point doing that separately/first. It doesn't appear to be vascularlly connected so should be able to excise a lot of it reasonably straightforwardly (its top and center).
I'm trying not to google stuff too much (but it is obviously inevitable), but the fact they only bandy around 5 year survival rates and % outcomes is not... illuminating or comforting. My biggest problem to conceptualize is that (I guess with all brain surgery) it seems to depend on how the intervention goes or how the individual reacts, so even knowing if it could be day surgery (apparently a possibility) or I could be in the ICU for days afterwards.. The paperwork also uses fantastic euphemisms like "deficits" following the surgery.. temporary to permanent of course.
I guess to start any experiences or thoughts on having a crainiotomy in terms of prep & recovery? Then I'll know more when they get a bit under the microscope and genetically test it to find out if there are any follow on interventions required. Its being done under the QE in Birmingham which I think can only be a good thing in terms of rep & resources..
Thanks,
Craig
After a good few months of increasing symptoms which I'd put down to anxiety and depression (and then the subsequent side effects from the SSRI..) including left side weakness, occasional tremor, banging headaches and the odd visual symptom black/light spots, about 3 weeks ago I had a full blown seizure which resulted in a blue light trip to A&E where they stuck me in an MRI. Initially a 'mass' they've settled on a primary brain tumor in the region of 75x35mm which sounds... big to me..?
It looks like a grade 1 or 2 Glioma. The plan is to 'debulk' it via surgery in a couple of weeks. They won't know if its benign or cancerous until they genetically test it, but no point doing that separately/first. It doesn't appear to be vascularlly connected so should be able to excise a lot of it reasonably straightforwardly (its top and center).
I'm trying not to google stuff too much (but it is obviously inevitable), but the fact they only bandy around 5 year survival rates and % outcomes is not... illuminating or comforting. My biggest problem to conceptualize is that (I guess with all brain surgery) it seems to depend on how the intervention goes or how the individual reacts, so even knowing if it could be day surgery (apparently a possibility) or I could be in the ICU for days afterwards.. The paperwork also uses fantastic euphemisms like "deficits" following the surgery.. temporary to permanent of course.
I guess to start any experiences or thoughts on having a crainiotomy in terms of prep & recovery? Then I'll know more when they get a bit under the microscope and genetically test it to find out if there are any follow on interventions required. Its being done under the QE in Birmingham which I think can only be a good thing in terms of rep & resources..
Thanks,
Craig
In 1988 my father had a large, unattached tumour removed from the left side of his brain. The tumour was wrapped around his ear, his trigeminal nerve and his brain stem. Pre-op he was given a 25% chance of survival with a prognosis of death within 6-9 months if he didn't have the op.
The trigeminal nerve was partially severed and his inner ear removed in the OP. The nerve damage has left him with a permanent droop to that side of his face.
He had a fairly gruelling 3 months of rehab and wasn't really back to fully fit for about 18 months.
He's 91 now and still fit, active and mentally unlimited.
Don't know if that helps any but it's at least one example of how these things work out well
The trigeminal nerve was partially severed and his inner ear removed in the OP. The nerve damage has left him with a permanent droop to that side of his face.
He had a fairly gruelling 3 months of rehab and wasn't really back to fully fit for about 18 months.
He's 91 now and still fit, active and mentally unlimited.
Don't know if that helps any but it's at least one example of how these things work out well
Thanks guys. I will say if the brain surgery is half as good as the food I had while kept in, I feel I'm in safe hands as it was a considerable improvement on what I remember as a child! 
Its abundantly clear the NHS has issues even from my few weeks of exposure, but its also very clear it still kicks into gear for the really important stuff, so I have every confidence.
The anecdotal stuff does help, as the basic facts and statistics are so difficult to actually relate to... well anything really. Currently the idea of dying of an aggressive brain tumor seems somehow preferable to them getting something benign out but leaving me with catastrophic complications.. Time will tell and just gotta roll the dice I guess..
Its abundantly clear the NHS has issues even from my few weeks of exposure, but its also very clear it still kicks into gear for the really important stuff, so I have every confidence.
The anecdotal stuff does help, as the basic facts and statistics are so difficult to actually relate to... well anything really. Currently the idea of dying of an aggressive brain tumor seems somehow preferable to them getting something benign out but leaving me with catastrophic complications.. Time will tell and just gotta roll the dice I guess..
Burner account.
I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely s
tting my pants about it.
They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely s
tting my pants about it.They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
Edited by unexpectediteminbaggingarea on Friday 26th May 10:32
My mum was found to have had a brain tumour in Sept 2020 (72 at the time) and was apparently a quarter of the size of her brain. Told she would have less than a year to live. Operated on, most of the tumour removed (can't remove it all as this has tendrils and most aggressive form of tumour), had a clot for a couple of weeks after the surgery and she is still with us today. Memory isn't great, remembers some things, but not others, but still her usual self.
Last time she had a scan some 6-9 months ago, the growth was very minimal, although she isn't really allowed on long haul flights due to potential of a clot.
Hope that helps in giving you some reassurance
Last time she had a scan some 6-9 months ago, the growth was very minimal, although she isn't really allowed on long haul flights due to potential of a clot.
Hope that helps in giving you some reassurance
I'm sorry to hear of your situation OP, I have a friend who is going something similar at the moment. Was having what he called 'partial seizures', had to surrender driving license, then had a scan which revealed the tumour, followed by a biopsy a few weeks later. He is actually quite ill and can no longer use his phone so, I can't keep in touch other than via his Mum. Currently, I'm waiting to hear the result of his biopsy but, not sure how long that takes (it's been 2 weeks since biopsy was done).
From the online research I've been doing, I have seen many, many stories of positive outcomes - I wish you the very best.
You too, unexpectediteminbaggingarea - I hope all goes well for both of you.
From the online research I've been doing, I have seen many, many stories of positive outcomes - I wish you the very best.
You too, unexpectediteminbaggingarea - I hope all goes well for both of you.
unexpectediteminbaggingarea said:
Burner account.
I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely stting my pants about it.
They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
Thanks for the post, it does sound like a very similar status and diagnosis. Interesting that monitoring is an option for you, while I suppose I could advocate and postpone, their default approach very much seems to be remove as much as possible (regardless of its grade/status) mainly to reduce ongoing symptoms if nothing else. Plus, as mentioned they won't be definitive on what it is until they've biopsied it, which they don't seem keen to do separately/first. I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely s
tting my pants about it.They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
Edited by unexpectediteminbaggingarea on Friday 26th May 10:32
They've got me on levetiracetam as well and another steroid, both reasonably chunky doses, which have certainly helped knock a lot of the symptoms on the head (no more headaches, eye pressure or visual symptoms), but I'm not at a stage where I think I could live with this in its current form without an attempt at surgical improvements. The tremors, balance/wobble issues are pretty tedious, and don't even get me started on the minimum 6 month driving licence surrender....
cRaigAl205 said:
unexpectediteminbaggingarea said:
Burner account.
I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely stting my pants about it.
They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
Thanks for the post, it does sound like a very similar status and diagnosis. Interesting that monitoring is an option for you, while I suppose I could advocate and postpone, their default approach very much seems to be remove as much as possible (regardless of its grade/status) mainly to reduce ongoing symptoms if nothing else. Plus, as mentioned they won't be definitive on what it is until they've biopsied it, which they don't seem keen to do separately/first. I find myself in a similar position Craig, although slightly different circumstances. This is the very (very) abridged version of where I am...
Zero symptoms.... seizure in my sleep 7 weeks ago... MRI and CT scans, shadow found... 5 days in hospital on the stroke ward (not pleasant)... referred to Queens Square to see a brain surgeon. Glioma of some sort (low grade), back right on the surface so it is accessible. Just waiting for a date to have it removed.
It's either that and throw the dice, or sit on it and have it scanned every 3 months. Surgeon said 5-7years before it progresses into something where then it becomes more of a problem if its not removed now.
I have had zero heath issues in my 39 years on planet earth.... I have been to the doctors about 3 times in the last 20 years, and truth be told I am absolutely s
tting my pants about it.They put me on levetiracetam, and I can't drive until 1 year after op at the very earliest. All of which pails into the ether in the grand scheme of things...
Edited by unexpectediteminbaggingarea on Friday 26th May 10:32
They've got me on levetiracetam as well and another steroid, both reasonably chunky doses, which have certainly helped knock a lot of the symptoms on the head (no more headaches, eye pressure or visual symptoms), but I'm not at a stage where I think I could live with this in its current form without an attempt at surgical improvements. The tremors, balance/wobble issues are pretty tedious, and don't even get me started on the minimum 6 month driving licence surrender....
I am trying to be as pragmatic and emotionally neutral as possible and trying to not dwell too much on the what ifs, which is sometimes easier said than done.
I sincerely wish you all the best with your treatment going forward, and it has mentally helped me seeing your post so thank you for posting.
If you want to contact me privately then by all means do so.
unexpectediteminbaggingarea said:
Yeah the driving thing is a pain, especially as the 'clock' to get back driving again only starts ticking once the surgery has been done. I have almost come to the terms with the possibility of never driving again, my primary objective is getting through the surgery and being here for my wife, daughter and family.
I am trying to be as pragmatic and emotionally neutral as possible and trying to not dwell too much on the what ifs, which is sometimes easier said than done.
I sincerely wish you all the best with your treatment going forward, and it has mentally helped me seeing your post so thank you for posting.
If you want to contact me privately then by all means do so.
I'm sure I also read (although a lot of info has obviously gone in and out in the last few weeks...) that the DVLA have their own doctors as well, and can ask to review medical files and make their own call, and turn you down even if your consultant suggests you are fit to get your license back. As you say though, its somewhat down the priority list and is small fry in the grand scheme of things, its just a pain that I live in a part of the country where public transport is... sub optimal! I think the nearest trainstation is a 30min (12mile) drive away, and we don't talk about busses on PH obviously.. I am trying to be as pragmatic and emotionally neutral as possible and trying to not dwell too much on the what ifs, which is sometimes easier said than done.
I sincerely wish you all the best with your treatment going forward, and it has mentally helped me seeing your post so thank you for posting.
If you want to contact me privately then by all means do so.
Likewise, if you want to drop me a PM on anything, feel free- happy to share my email address if easier etc. I think its made me realise I'm almost certainly on some kind of a spectrum. Emotion hasn't really come in to it for me at all (so far at least, I'm sure it could be coming..), I'm just quite content just trying to get as many things lined up and organised as possible (up to the stage of making lists of lists now!), plus I'm still mostly full-time at work which I think is a blessing in terms of staying occupied and distracted.
The operation has now been firmed up for Monday the 19th of June, so not too long to wait in the grand scheme of things. All being well not a lot will change or develop before then. I just wish I could know or plan if its going to be a case of being out of action for a couple of days, or basically wiped out for months on end, but I guess every brain is an individual and fickle thing..even before there is something nearly the size of a mars bar taking up space that it shouldn't be..
Cheers,
Craig
I had brain surgery 20 years ago and the surgeons are amazing. Just keep positive and let them do their thing. It will all work out in the end.
I've also had two periods of a year without a license. I'd recommend an ebike. They give a bit of freedom in conjunction with taxis and trains. Not driving isn't as convenient but it isn't the end of the world.
I've also had two periods of a year without a license. I'd recommend an ebike. They give a bit of freedom in conjunction with taxis and trains. Not driving isn't as convenient but it isn't the end of the world.
I was diagnosed with a meningioma in 2013, grade 1 and slow growing, but it was putting pressure on my brain stem. Long story very short, 18 hour operation, bunch of rehab. It left its mark but I lead a pretty normal life now. I wrote a little “book” about it, happy to email a copy if you want.
crikey said:
I was diagnosed with a meningioma in 2013, grade 1 and slow growing, but it was putting pressure on my brain stem. Long story very short, 18 hour operation, bunch of rehab. It left its mark but I lead a pretty normal life now. I wrote a little “book” about it, happy to email a copy if you want.
Hi Crikey, sounds interesting, you should be able to email me via my profile if you wouldn't mind sending it over 
Thanks,
Craig
cRaigAl205 said:
I'm sure I also read (although a lot of info has obviously gone in and out in the last few weeks...) that the DVLA have their own doctors as well, and can ask to review medical files and make their own call, and turn you down even if your consultant suggests you are fit to get your license back. As you say though, its somewhat down the priority list and is small fry in the grand scheme of things, its just a pain that I live in a part of the country where public transport is... sub optimal! I think the nearest trainstation is a 30min (12mile) drive away, and we don't talk about busses on PH obviously..
Likewise, if you want to drop me a PM on anything, feel free- happy to share my email address if easier etc. I think its made me realise I'm almost certainly on some kind of a spectrum. Emotion hasn't really come in to it for me at all (so far at least, I'm sure it could be coming..), I'm just quite content just trying to get as many things lined up and organised as possible (up to the stage of making lists of lists now!), plus I'm still mostly full-time at work which I think is a blessing in terms of staying occupied and distracted.
The operation has now been firmed up for Monday the 19th of June, so not too long to wait in the grand scheme of things. All being well not a lot will change or develop before then. I just wish I could know or plan if its going to be a case of being out of action for a couple of days, or basically wiped out for months on end, but I guess every brain is an individual and fickle thing..even before there is something nearly the size of a mars bar taking up space that it shouldn't be..
Cheers,
Craig
That's great you have got a date... something to mentally aim for. It is reassuring to hear other peoples experiences too, so thanks for taking the time to post.Likewise, if you want to drop me a PM on anything, feel free- happy to share my email address if easier etc. I think its made me realise I'm almost certainly on some kind of a spectrum. Emotion hasn't really come in to it for me at all (so far at least, I'm sure it could be coming..), I'm just quite content just trying to get as many things lined up and organised as possible (up to the stage of making lists of lists now!), plus I'm still mostly full-time at work which I think is a blessing in terms of staying occupied and distracted.
The operation has now been firmed up for Monday the 19th of June, so not too long to wait in the grand scheme of things. All being well not a lot will change or develop before then. I just wish I could know or plan if its going to be a case of being out of action for a couple of days, or basically wiped out for months on end, but I guess every brain is an individual and fickle thing..even before there is something nearly the size of a mars bar taking up space that it shouldn't be..
Cheers,
Craig
Haemangioblastoma 19 years ago. Surgeons didn't know exactly what kind of tumour it was until brain surgery (couldn't do a biopsy) took place. Misdiagnosed several times, bad headaches etc. An anxious wait after diagnosis (cancerous?) then the op was cancelled the night before while I was already prepped in the hospital bed. Post op a couple of seizures and amnesia...fair bit of dizziness. Op successful, but psychological factors took several years to iron out. Grateful to still be here obvs!
Voldemort said:
I can add nothing of use. But for what it's worth the NHS saved my life and in cases like this they are generally amongst the best in the world. Good luck, stay positive and enjoy every sandwich.
Having said that, it wasn't until it was suggested by my consultant that I could/should make a claim on my critical illness cover. I guess I had other things on my mind. Anyway, if you have a critical illness cover to your mortgage you should make a claim on it.Unfortunately I have no kind of insurances/cover in place, but the main thing is I'm not going to starve at least well until the medium term. I've got 4 weeks full sick pay in any 12month period (and work are super awesome and already making noises about 'doing the right thing' after that) I have no intention of taking the mick, but hopefully by then we will be discussing some kind of pro-rata/part time/wfh arrangement.
I've done the research and there's sod all help from the government! I find it bizarre that you can be both too wealthy (means tested on savings) or too poor (if you earn something like £150quid a week or less, you get nothing!! Not sure how they expect people earning circa £8k a year to support themself if too ill to work..?
)
Same with council tax discount & any kind of Universal Credit. I think I might be able to get a loan to cover mortgage payments, but seems like more hassle than its worth..
I've done the research and there's sod all help from the government! I find it bizarre that you can be both too wealthy (means tested on savings) or too poor (if you earn something like £150quid a week or less, you get nothing!! Not sure how they expect people earning circa £8k a year to support themself if too ill to work..?
)Same with council tax discount & any kind of Universal Credit. I think I might be able to get a loan to cover mortgage payments, but seems like more hassle than its worth..
Edited by cRaigAl205 on Sunday 28th May 19:49
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