What's wrong with me?!
Discussion
Picked up prescription of sucralfate which I'll start tomorrow. I've been generally feeling better the last 2 weeks (not better better, but an improvement) so I'm almost tempted to avoid the meds to see what happens but think I'll give them a go. They're pretty big tablets and 1 gram of active ingredient per tablet.... 3 per day!
Well, for anyone remotely interested....
I FINALLY have found the cause for this problem which, since April, continued to get progressively worse (admittedly slowly) and is currently the worst it has ever been.
I had an MRI brain scan last Saturday, phone call Monday late morning asking me to go for another one this week, but this time with a contrast dye. This was arranged (and done) Friday just gone. Tuesday following the initial MRI scan I get a call from my GP requesting me to see him that day. I said I was very busy at work but could cancel my clinic and see him if it was urgent. He simply replied "I think that it is and you should come in today". I think you can see where this is going....
Basically, I have a 3.5-4cm brain tumour in an extremely rare location near my 4th ventricle and cerebellum (hence I occasionally get dizzy). 4th ventricle tumours are relatively easy to operate on but there's something different about mine and its location and they are not yet sure what they can do at this stage.
My 2nd scan has been sent to Southampton neuro department and all the consultants there will be meeting Tuesday and my case is one hey'll be discussing to see where to go from here.
Apparently, it's amazing I'm still walking. I'm getting properly fed up with this problem now and want it going away. It's not great when they say they aren't sure if they can do anything, and that if left untreated it would EVENTUALLY be, well, the end of me....
I await a phone call Wednesday/Thursday time I believe.
What a f
ker.
I FINALLY have found the cause for this problem which, since April, continued to get progressively worse (admittedly slowly) and is currently the worst it has ever been.
I had an MRI brain scan last Saturday, phone call Monday late morning asking me to go for another one this week, but this time with a contrast dye. This was arranged (and done) Friday just gone. Tuesday following the initial MRI scan I get a call from my GP requesting me to see him that day. I said I was very busy at work but could cancel my clinic and see him if it was urgent. He simply replied "I think that it is and you should come in today". I think you can see where this is going....
Basically, I have a 3.5-4cm brain tumour in an extremely rare location near my 4th ventricle and cerebellum (hence I occasionally get dizzy). 4th ventricle tumours are relatively easy to operate on but there's something different about mine and its location and they are not yet sure what they can do at this stage.
My 2nd scan has been sent to Southampton neuro department and all the consultants there will be meeting Tuesday and my case is one hey'll be discussing to see where to go from here.
Apparently, it's amazing I'm still walking. I'm getting properly fed up with this problem now and want it going away. It's not great when they say they aren't sure if they can do anything, and that if left untreated it would EVENTUALLY be, well, the end of me....
I await a phone call Wednesday/Thursday time I believe.
What a f
ker.goldblum said:
I too had a large tumour(haemangeoblastoma) on my cerebellum. After an 'anxious' time it turned out - post op (because they couldn't perform a biopsy) - to be benign. Neurosurgeons do hundreds of these type of operations every month. If you're interested to see exactly how casual they are about these things they actually post some operations on Youtube.
Very true, but the neurosurgeon I spoke to said they couldn't be sure.... But I'm sure they'll figure something out. Most brain tumours are benign, they are dangerous because they are in an enclosed space and can press on some important stuff.
I am remaining positive, and will keep this thread updated.
Yesterday was one of the first days when I thought "how amazing would it be if they are able to get this tumour out of me and I stop being sick and return to normal!!"
That'd be simply amazing. Tomorrow is D-day I guess, though I don't expect to hear from them for another day or two.
Thanks for the kind words and thoughts chaps, means a lot. And Goldblum - good to hear your experiences, and that you're back to normal now.
That'd be simply amazing. Tomorrow is D-day I guess, though I don't expect to hear from them for another day or two.
Thanks for the kind words and thoughts chaps, means a lot. And Goldblum - good to hear your experiences, and that you're back to normal now.
Thanks once again for the kind words, chaps.
boxst said:
Have they suggested any treatment yet? My wife has a brain tumour in a similarly inoperable place and it was decided in the end to use gamma knife treatment. This worked in that it stopped to tumour from growing any larger and it actually shrunk a little. Ten years later and it is still okay. Most of the side-effects didn't occur, apart from a slight change in personality 
Good luck with whatever they suggest.
Not as yet. I shall hopefully find out more within 1-2 days. Just hope it's something they can get sorted. I'm getting properly fed up with feeling ill all the bloody time, it's really depressing.Good luck with whatever they suggest.
My registrar sent me an email earlier and confirmed it was a tumour of th 4th ventricle (not between it and cerebellum) but said he wasn't sure at this stage what type of tumour it was.
I will almost certainly get a call tomorrow.
The most common type of tumour of this place has a post-op 1 year survival rate of approx 82%. To be fair, I quite like those odds. Oh, it does look like surgery is the option for the most common type.... I use stop looking though because I don't know if it's even that yet! Fingers crossed for the best!
I will almost certainly get a call tomorrow.
The most common type of tumour of this place has a post-op 1 year survival rate of approx 82%. To be fair, I quite like those odds. Oh, it does look like surgery is the option for the most common type.... I use stop looking though because I don't know if it's even that yet! Fingers crossed for the best!
LouD86 said:
Only met you once Ross (that was a great SS), but am sorry to hear of this. You know I'm local, and will happily help out if anything is needed ok bud!
Get well soon, you'll be alright!
It was great, aside from my speeding ticket!! Get well soon, you'll be alright!
The consultant I'm seeing is a specialist in neurosurgery with a speciality in neuro-ocology
.... One could easily draw to the conclusion of it being cancerous but I think that's a bit of a leap at this stage, though I'm now rather certain it'll be surgery considering that's pretty much what he does!
One small step closer.
goldblum said:
Unless they've somehow done a biopsy without you realising it there is no way of telling whether the tumour is cancerous or not until they take it out. Try not to freak yourself out!
I know, that's why I said 
Registrar phoned me and asked how I'm doing which was nice. He's going to try and contact the consultant tomorrow and see if he can get me any more details before Tuesday
ali_kat said:
Thoughts will be with you on Tuesday (unless it's at 11am )
What's happening Tuesday at 11am? )
Wasn't sick early this morning.... But 20mins ago was just sick at work. Bugger. Hey ho, get used to it after all this time!
The fact I have pre-assessment suggests there's something that can be done. That's very promising and also exciting, dare I say.
Had a call from my registrar today. Neuro dept wouldn't release any more information....BUT he said (stating clearly he wasn't a neurologist) it looks like 1 of 2 tumours, both are benign and said it's most likely a type of tumour beginning with "sub" and ending with "oma"....the signal was poor and couldn't hear clearly. But (as one does) upon googling 4th ventricle tumours and finding a list of common 4th ventricle tumours (common, he says....) there was only 1 beginning with the "sub" pre-fix.
IF (and it's a big IF!) it is that type of tumour then it's surgery.....and the prognosis is generally very good.
I'm in for my pre-assessment Tuesday before seeing the consultant - a few people are saying that usually you're in quite soon after the pre-assessment....usually within a week or so. Any thoughts on this?
How am I feeling right now (other than a bit sick, as I usually do these days)? worried? No. Upset? No. Nervous....a little. Mostly....bloody excited. I want this bd gone. And it looks like I'm so, so close to ridding something that's caused me so much misery over the last 14-15 months - it's a truly wonderful feeling, I can finally see some light.
I'm getting old and emotional in my old age I guess....
IF (and it's a big IF!) it is that type of tumour then it's surgery.....and the prognosis is generally very good.
I'm in for my pre-assessment Tuesday before seeing the consultant - a few people are saying that usually you're in quite soon after the pre-assessment....usually within a week or so. Any thoughts on this?
How am I feeling right now (other than a bit sick, as I usually do these days)? worried? No. Upset? No. Nervous....a little. Mostly....bloody excited. I want this b
d gone. And it looks like I'm so, so close to ridding something that's caused me so much misery over the last 14-15 months - it's a truly wonderful feeling, I can finally see some light.I'm getting old and emotional in my old age I guess....
goldblum said:
In my case I had to wait three months before surgery as they wanted to bring the size of the cyst down. Cue massive amounts of anti-inflammatories. I'm sure if the neurologist feels your life is threatened and it's safe to operate they'll whip the tumour out asap.
Thanks for this. I'm sorry to hear your experiences, sounds like you certainly had a rough time but main thing is you're still here and fighting fit! Well, the wait is almost over. Only a 1/2 day at work tomorrow (only ever do 1/2 day monday), few bits to get done in the afternoon, meal out with the mother in the evening (who's driving from Chippenham to come down for Tuesdays appointments), then it's only 3 hours in work Tuesday until my appointments.
I'm feeling absolutely exhausted lately. Combination of not sleeping especially well, a little added stress and an insanely busy week at work last week has taken its toll. I can see myself in bed by 9 tonight!
I'm feeling absolutely exhausted lately. Combination of not sleeping especially well, a little added stress and an insanely busy week at work last week has taken its toll. I can see myself in bed by 9 tonight!
slippery said:
Your employer should be very proud of you. I've got a few people that like to take a Monday off if they think they are going to sneeze!
They know I'm unwell but don't think they realise just how unwell. I really do feel bad.... I'm not the sick day type person at all if I can avoid it. I usually just get on with it and rarely go to the Dr's but I knew after not too long after this started that something wasn't right. I am a bit annoyed my boss wants me to work until midday tomorrow (he found out my appointment was at 2:30pm).... I would have liked the morning off! I'm very busy and have something like 13 patients booked in up to midday.
slippery said:
Sounds like you need to have a bit of a frank chat. If I was your boss, I would want to know and help where I could.
Well I'm pretty sure I'll be having some time off soon I don't mind working, but there I the odd day I do think I should probably stay at home. However, if I do that.... I'd worry that I'd get into the habit of doing that regularly and losing out on money (I'm a chiropractor, I have a low base salary and work on a bonus scheme...)
Health is more important of course but you still need to pay the bills. Plus, if I stay at home I'll probably just mope about, watch some films and feel sorry for myself. I may as well help get other people feeling better.
I'm still struggling to grasp my head around the fact that this problem has been going on for so long now and, hopefully, it may finally come to an end.
A lot of friends, family and colleagues have all said how amazed they are at how I'm coping.... Going to work, not letting it get to me too much etc.... But it's the only way imo. What else should I be doing? I want to live as normally as possible.
Well, I shall try to reply later as a lot is going on at home right now.
Basically, could have been far better news. Could have also been worse. It's just hit home how serious this thing actually is.
It will be major surgery, I'll explain more later if I get the chance. Not feeling too clever right now.
Ross.
Basically, could have been far better news. Could have also been worse. It's just hit home how serious this thing actually is.
It will be major surgery, I'll explain more later if I get the chance. Not feeling too clever right now.
Ross.
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