Hi just joined this group , after having my first seizure in 2022 i Got took to A&E and was diagnosed with a brain tumour which shocked me. I was also put on levetiracetam 500mg 1 tablet twice a day . I met my neurologist who told me its the size of a golf ball and due to have it removed next week as its a meningioma . I feel ok and thankfully had no more seizures. I do have a slight tremor in my left hand, I also had an headache last night before I went to bed last night but took 2 paracetamol which solved it . I havent slept for nearly 6 weeks , im urinating more overnight , any advice would be appreciated
Advice would be appreciated : Hi just... - Meningioma Support
Advice would be appreciated
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Royal2020
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I'm guessing the headache will be down to stress?
Good luck for next week, hope all goes well x
Thank you , just hope everything goes okay 🙏
I'm sure it will, theres a lot of us had them removed and gone on to live a happy healthy life.
Have they taken your driving licence off you? X
No as when I saw consultant he said dont do it yet, but I Assume they will take it off me 😪, I havent drove since my seizure on 22nd January
Do you think I should inform the DVLA before my operation on the 11th March x
very true think it will be inevitable that my licence will be taken off me , just not sure if my medication will continue after my operation its all ifs and buts at the moment . Will have to write down a list of questions to ask my neurosurgeon next week x
Just to give you the heads up hun, you've replied to yourself instead of me, it was just by chance I seen it 
Tbh I don't know about the meds I didn't have any. Good idea to have a list of questions, I didn't have a clue what was going to happen, I just drank lots of wine! x lol
Sorry about that must be my brain tumour 😜 x wish i could have a good drink 🥂
Ha ha ! I'm on the weight loss forum a lot (another story) and it happens all the time
I take it you can't drink with the meds? Have you been told they'll shave some of your hair? I'm presuming you're female and that was important to me but they only shaved a bit x
Yes im female and they will shave some of my hair, luckily my hair is quite long and grows quickly , pity the surgeon cant do my highlights whilst his at it 😁. I can have a little alcohol but have decided not to at the moment
Lol ! Yes getting your highlights done would be handy !
Did they tell you you'd wake up with a catheter? That was a shock to me !
Loving the black lab btw, beautiful! x
Had catheters in loads of times so dont bother me at all , yes thats my lab his so gentle and soft 🥰
Awe bless, he'll be good company for you lying on the sofa and recuperating. Here's my boy x
Alfie
Aww his gorgeous xx
Thanks which hospital are you having your op? Mine was at James Cook in Middlesbrough then I had stereotactic radiosurgery (gamma knife) at the Hallam in Sheffield x
Im having mine at the RVI Newcastle x
Oh that's good to know they do them we're moving up to Northumberland soon and I wondered if I would have to travel down to James cook for my MRIs x
Had my hysterectomy at RVI few years ago , highly recommended 👍x
Awe brilliant, that's a weight off my mind, thank you! My surgeon has retired now and I was a bit concerned where I would go if there was ever any reoccurring x
So pleased its reassuring for you , When you move to Northumberland just ask your new GP surgery to refer you to RVI x
Yes I will do, I'm due a follow up MRI next year, thanks.
Have you got plenty of support and family round you? X
Aww yes ive got a big family and plenty of friends for support so thats a big help x when you moving to Northumberland x
Oh that's good, lean on them when you need to.
The solicitor said yesterday the house should be completing on Friday but we're going to do the decorating before we move in, can't wait! x
I certainly will thank you ,exciting times for you moving into your new home 🥂.Cant believe how many people actually have brain tumours . You dont realise until it actually happens to you . Good that people have time to support and help others who are concerned when first diagnosed . It certainly is a shock to the system x
I know, after I had had the op it turned out three people I knew had had them and I didn't even know !
I didn't know about this place when I was going through it and had so many questions even though everyone has a different experience.
It is a HUGE shock and takes some getting your head round it (excuse the pun!) If you have any questions feel free to ask me anything, it's scary! X
Its just the unknown on what goes on after the surgery , how will i feel ? Fatigue? Etc x
Well I was in a lot of pain but amazingly the paracetamol they prescribed kept it under control. I did feel fatigued, even walking to the loo was hard work for a couple of weeks. They took my staples out before I left hospital so there was no follow up appointment with anyone I was just told to watch for signs of infection in the wound and couldn't wash my hair for a while x
Thats good to know,luckily my bedroom and toilet is downstairs so wont have to walk far 😂x
Oh great, that'll come in handy ! What day next week are you going in? X
I have to have my PCR on tues 8th and have to be on the ward at 07:30 on friday the 11th March x
Well good luck, keep in touch and let us know how you get on, I'll be thinking of you . X
Thank you will keep in touch , appreciate all the support , fingers crossed all goes well x
I'm sure it will, I thinking removing meningiomas is pretty routine these days! I asked my consultant what happens if it grows back? He said "I'll just whip it out again!" Lolx
Good answer ha ha x I will find out next week all about it whenni speak to my surgeon
Hope he manages to reassure you (take him a box of chocolates to keep him sweet! ) x
I certainly will , might ring the nurses in the morning to see where the meningioma is not sure what lobes it is actually on x thought I would have had a letter from my gp with information after being admitted to hospital in January xx
I think if I remember rightly I got a copy of the MRI report but it was all double dutch to me, I just know it was behind my right eye x
I briefly saw the mri scan which looked on the right side of the scan xx
The thing is they don't mean anything to us, only the specialist and we've got to trust them to do their jobs I suppose? X
Yes very true we are in safe hands thankfully x🙏
Well I had mine done 18 years ago so they've had 18 more years of practice before they're doing yours x
Wow thats amazing x
It really is unbelievable what they can do. As far as I'm concerned my consultant can walk on water! x lol
Totally agree , we would be lost without our NHS x
Oh absolutely ! Have you got all your jobs done so you don't need to worry about anything when you get back home? X
Yes busy keeping up with housework and washing/ ironing etc as will be lady of leisure when i come home. Mind you there will be a list of chores for them to do when I go in hospital next week 😂 x
Ha ha ! That'll keep them out of trouble! x
Yes most definately 😁 x
Good luck for Friday chick! X
Aww thank you so much , I'm a little bit anxious but just need to get this over with and hopefully things will be OK x going for my pcr test today at 1pm 🙏
Of course you will be, deep breaths hun ! It was the best thing I could have done, you'll be pleased once you're out the other side x
I know willbe glad when it's over with x
Won't be long now, let me know how it goes when you're feeling up to it x
I certainly will , thank you for your support and advice x speak soon
Take care hun x
Thank you 🥰
Hiya hun, just thinking about you and hope you're doing ok x
I'm doing good. Had my op at midday on Friday. In recovery at 4pm. Bp and heart rate was low in friday night so was on iv fluids. Everything went well. Ct scan was OK. Need mri scan in 3 months to check if anything left behind but removed it all I believe. Up and about in hospital. Eating and drinking well. Possibly going home tomorrow so all good . Glad it's over though but the RVI a good hospital ward staff etc very pleasant and well looked after x
Awe that's BRILLIANT ! Well done hun, is your pain under control? X
Yes just taking paracetamol when needed still not sleeping good but taking each day as it comes but gen feel OK for now , mild fatigue kicking in
Hey that's good ! Sorry for the late reply, only just got broadband connection sorted, how you doing now? X
Hi yes I'm doing good , hot my histology results back yesterday it was grade 1 benign 🙏. Think I overdone things yesterday though ie housework as my BP was sky high so booked in to A&E to get checked out, it came down a bit so got discharged , have to see gp in the morning xx how are you doing ?
Oh benign is GREAT, mine is too! Oh take it easy hun, listen to your body.
I'm staying in the new house atm taking deliveries x
Aww fantastic are you all settled in x
Ha ha ! Not really, I'm camping out witha mattress and a deck chair x lol
I'm sure that is fun xx bet you cant wait for it to be like home again
Ooh it'll be like Christmas unpacking x
I bet xx
Hi how you feeling? X
I'm fine bp a bit high on an evening but got to do a weeks readings and go back to gp , haven't had any more seizures which is good xx how are you ? X
Hey no seizures is GREAT ! Am I right in thinking the more time goes on the more the chances of having one lesson? Or have I just dreamt that up? X
I'm hoping so , will ask My Consultant when I see him end of June 🙏 xx
Fingers crossed you're still seizure free then! Have you been able to wash your hair now? If I remember rightly I think I got told to wait two weeks, I was climbing the wall! X
Yes it felt amazing to wash my hair, I had my sutures out last Friday, the wound is healing nicely you can hardly see the scar down by my ear xx
Wow ! That's BRILLIANT ! My scar is quite bad but most of it is behind the hairline so not really visible x
I feel really well , sleeping pattern still not great but still tome yet to settle. Still have slight headaches on a morning but paracetamol works wonders for that xx
Oh sounds like you're doing GREAT, that's wonderful news isn't it amazing how effective the old paracetamol is??? Xhealth
I know can't believe my surgery was only 3 weeks yesterday xx see my consultant end of June xx
Awww, I'm so very pleased for you, it's all over with now x
Aww me too worst bit is over , how's your new home getting on x
Welk the carpets got laid yesterday and I'm just sat waiting for Hillarys blinds, he said he would be here about 11 (ish)??? X
Fab bet you can't wait for it to be all done x
Yes, I'm going to start decorating downstairs tomorrow x
Will it take long to get it the way you want it xx
Not really, it's just cosmetic, but do we ever get to the point of not wanting to change anything? X
I know always something needs doing x
True x
Hi how are you doing xx
Hiya I'm good thanks, the OH is moving up tomorrow so I'm sooo excited, it's going to be a long day today !
How are you doing, has what you've been through sunk in yet? X
Excellent news your OH moving up to tomorrow. Yes it's sunk in the op etc was fine just the sleeping pattern still not great and no driving is still getting on my nerves but hey ho small price to pay.. had no more seizures so that's a blessing xx🙏
I still get days when I'm tired but I'm older now? You'll be driving again before you know it. Absolutely a blessing no seizures, that's BRILLIANT x
I know I'm dreading trying to get my licence back as the DVLA have been an absolute nightmare looking at v the reviews from people 😱 xx
Hi I had my M removed just over 3 weeks ago. I had my head shaved ear to ear. Not great. It took a while to get used to the idea that is what surgeon was going to do. Then I was more worried about surgery. I am doing really well so nothing to worry about. My first seizure was while I was in recovery after surgery. I too am on LevETIRAcetam (also known as Keppra). I’ve been told I can’t drive for a year now. I’ve just looked it up on the Epilepsy website and that is the case about not be able to drive and you need to let the DVLA know. See link below. Best of luck with your surgery. You have got this 💕
Aww thank you for that advice just hope as Im already on keppra that I wont have any more seizures , fingers crossed. How long were you in hospital for ? You seem to be doing well 3 weeks post op 🙏
9 nights including night before surgery. 6 hour operation. I wasn’t with it until a week after surgery but I hadn’t realised that but my family had 🤷♀️
Im not sleeping at all for weeks so maybe the rest will do me good 😴
I wasn’t sleeping before surgery and it’s taken over two weeks to get better sleep. It was only yesterday that I had two sleeps in the day. We are all different and I’m sure you will get the rest you need. Just don’t rush anything time is a great healer.
Sorry I can’t add a link. Look up the Epilepsy Society and search DVLA
Thank you I will do 👍
HiPlease read my book written to advise and support fellow sufferers amazon.co.uk/Fightback-Brai...
Be blessed.
Cheers, Jay
Hello Royal, lve just read your story, you sound just the same way as myself. I had the same surgery for a brain tumour in June 2019. Like yourself, it is a big shock to be diagnosed with thus. Our symptoms sound the same, l have a tremar in my right hand, suffer headaches and take Levetiracetam 500mg twice daily. If you want to communicate with me, l will help you all l can. Take care, Jennifer
Hi thank you replying, I'm doing ok 6 weeks post surgery today my sleeping is still a bit erratic , can I ask if you have had any more seizures ?
Tagging Brooklynduo so they see your reply x
You always keep me right 😄 xx thank you
Ha ha ! Anytime hun x
I'm OK 6 weeks post surgery today hoping to get the hair highlighted next few weeks 🤣 xx
Excellent ! You'll be all ready for Summer x
Just spoke to my nurse specialist and she has advised 3 months after my surgery to get my hair highlighted 😔 xx
Tbh I used to get mine done with the cap instead of the foils and I didn't fancy that needle poking around any where near my scar ! I started using the box dyes but now my dermatologist says I can't use them so I'm "Au Naturel" atm, sort of a salt and pepper mucky blonde, hey ho! x
It doesn't look too bad tbh but I've gone 6 weeks post surgery so another 6 weeks won't be too bad I suppose xx
Ach, it'll be fine, the sun will be lightening it soon anyway x
Very true I suppose as it hasn't been highlighted in 7 months will have done it good too xx
Yes it'll be in much better condition, mine is even if it's a funny colour! x lol
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