Advice would be appreciated

[Royal2020]

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

[Lytham]

I'm guessing the headache will be down to stress?

Good luck for next week, hope all goes well x

[Royal2020 in reply to Lytham]

Thank you , just hope everything goes okay 🙏

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

I hadn't had any seizures but they took my driving licence off me after the op, it took DVLA 6months to give it back to me, apply early x

[Gobucks87 in reply to Royal2020]

How did surgery go? I just had a baseball sized meningioma removed in feb. They tell me i should do radiation right away instead of waiting to see if it grows back.

[Royal2020]

Do you think I should inform the DVLA before my operation on the 11th March x

[Lytham in reply to Royal2020]

Not if your consultant said not to but I suppose it's only delaying the inevitable? I think for me I had to be seizure free for six month after the op if I remember rightly. X

[Royal2020]

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

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Sorry about that must be my brain tumour 😜 x wish i could have a good drink 🥂

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Had catheters in loads of times so dont bother me at all , yes thats my lab his so gentle and soft 🥰

[Lytham in reply to Royal2020]

Awe bless, he'll be good company for you lying on the sofa and recuperating. Here's my boy x

Alfie

[Royal2020 in reply to Lytham]

Aww his gorgeous xx

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Im having mine at the RVI Newcastle x

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Had my hysterectomy at RVI few years ago , highly recommended 👍x

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

So pleased its reassuring for you , When you move to Northumberland just ask your new GP surgery to refer you to RVI x

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Its just the unknown on what goes on after the surgery , how will i feel ? Fatigue? Etc x

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Thats good to know,luckily my bedroom and toilet is downstairs so wont have to walk far 😂x

[Lytham in reply to Royal2020]

Oh great, that'll come in handy ! What day next week are you going in? X

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Well good luck, keep in touch and let us know how you get on, I'll be thinking of you . X

[Royal2020 in reply to Lytham]

Thank you will keep in touch , appreciate all the support , fingers crossed all goes well x

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Good answer ha ha x I will find out next week all about it whenni speak to my surgeon

[Lytham in reply to Royal2020]

Hope he manages to reassure you (take him a box of chocolates to keep him sweet! ) x

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

I briefly saw the mri scan which looked on the right side of the scan xx

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Yes very true we are in safe hands thankfully x🙏

[Lytham in reply to Royal2020]

Well I had mine done 18 years ago so they've had 18 more years of practice before they're doing yours x

[Royal2020 in reply to Lytham]

Wow thats amazing x

[Lytham in reply to Royal2020]

It really is unbelievable what they can do. As far as I'm concerned my consultant can walk on water! x lol

[Royal2020 in reply to Lytham]

Totally agree , we would be lost without our NHS x

[Lytham in reply to Royal2020]

Oh absolutely ! Have you got all your jobs done so you don't need to worry about anything when you get back home? X

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Ha ha ! That'll keep them out of trouble! x

[Royal2020 in reply to Lytham]

Yes most definately 😁 x

[Lytham in reply to Royal2020]

Good luck for Friday chick! X

[Royal2020 in reply to Lytham]

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 🙏

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

I know willbe glad when it's over with x

[Lytham in reply to Royal2020]

Won't be long now, let me know how it goes when you're feeling up to it x

[Royal2020 in reply to Lytham]

I certainly will , thank you for your support and advice x speak soon

[Lytham in reply to Royal2020]

Take care hun x

[Royal2020 in reply to Lytham]

Thank you 🥰

[Lytham in reply to Royal2020]

Hiya hun, just thinking about you and hope you're doing ok x

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Awe that's BRILLIANT ! Well done hun, is your pain under control? X

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Hey that's good ! Sorry for the late reply, only just got broadband connection sorted, how you doing now? X

[Royal2020 in reply to Lytham]

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 ?

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Aww fantastic are you all settled in x

[Lytham in reply to Royal2020]

Ha ha ! Not really, I'm camping out witha mattress and a deck chair x lol

[Royal2020 in reply to Lytham]

I'm sure that is fun xx bet you cant wait for it to be like home again

[Lytham in reply to Royal2020]

Ooh it'll be like Christmas unpacking x

[Royal2020 in reply to Lytham]

I bet xx

[Lytham in reply to Royal2020]

Hi how you feeling? X

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

I'm hoping so , will ask My Consultant when I see him end of June 🙏 xx

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Wow ! That's BRILLIANT ! My scar is quite bad but most of it is behind the hairline so not really visible x

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Oh sounds like you're doing GREAT, that's wonderful news isn't it amazing how effective the old paracetamol is??? Xhealth

[Royal2020 in reply to Lytham]

I know can't believe my surgery was only 3 weeks yesterday xx see my consultant end of June xx

[Lytham in reply to Royal2020]

Awww, I'm so very pleased for you, it's all over with now x

[Royal2020 in reply to Lytham]

Aww me too worst bit is over , how's your new home getting on x

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

Fab bet you can't wait for it to be all done x

[Lytham in reply to Royal2020]

Yes, I'm going to start decorating downstairs tomorrow x

[Royal2020 in reply to Lytham]

Will it take long to get it the way you want it xx

[Lytham in reply to Royal2020]

Not really, it's just cosmetic, but do we ever get to the point of not wanting to change anything? X

[Royal2020 in reply to Lytham]

I know always something needs doing x

[Lytham in reply to Royal2020]

True x

[Royal2020 in reply to Lytham]

Hi how are you doing xx

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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🙏

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Have the forms ready and apply as soon as you get the go ahead, fingers crossed! X

[Royal2020 in reply to Lytham]

Hopefully this time next year I will be driving 🙏 xx

[Lytham in reply to Royal2020]

Course you will x

[Paper2021]

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 💕

[Royal2020 in reply to Paper2021]

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 🙏

[Paper2021 in reply to Royal2020]

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 🤷‍♀️

[Royal2020 in reply to Paper2021]

Im not sleeping at all for weeks so maybe the rest will do me good 😴

[Paper2021 in reply to Royal2020]

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.

[Royal2020 in reply to Paper2021]

Thank you for that advice

[Paper2021]

Sorry I can’t add a link. Look up the Epilepsy Society and search DVLA

[Royal2020 in reply to Paper2021]

Will do thank you 👍

[Royal2020]

Thank you I will do 👍

[jasonoliv34]

HiPlease read my book written to advise and support fellow sufferers amazon.co.uk/Fightback-Brai...

Be blessed.

Cheers, Jay

[Brooklynduo]

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

[Royal2020]

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 ?

[Lytham in reply to Royal2020]

Tagging Brooklynduo so they see your reply x

[Royal2020 in reply to Lytham]

You always keep me right 😄 xx thank you

[Lytham in reply to Royal2020]

Ha ha ! Anytime hun x

[Royal2020 in reply to Lytham]

I'm OK 6 weeks post surgery today hoping to get the hair highlighted next few weeks 🤣 xx

[Lytham in reply to Royal2020]

Excellent ! You'll be all ready for Summer x

[Royal2020 in reply to Lytham]

Just spoke to my nurse specialist and she has advised 3 months after my surgery to get my hair highlighted 😔 xx

[Lytham in reply to Royal2020]

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

[Royal2020 in reply to Lytham]

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

[Lytham in reply to Royal2020]

Ach, it'll be fine, the sun will be lightening it soon anyway x

[Royal2020 in reply to Lytham]

Very true I suppose as it hasn't been highlighted in 7 months will have done it good too xx

[Lytham in reply to Royal2020]

Yes it'll be in much better condition, mine is even if it's a funny colour! x lol

[Royal2020 in reply to Lytham]

Very true , my hair grows that quick it will be down my back 😜 xx

[Lytham in reply to Royal2020]

Ha ha yes, a new look for a new woman x

[Royal2020 in reply to Lytham]

It will be having a good cut that's for sure xx