What to expect?

[Emmieheadtrouble]

So I have a C-P (??) Meningioma that showed up when I had an emergency MRI about 6 weeks ago after I suddenly lost feeling in one half of my face which started at the end of January this year, it's pressing on my trigeminal nerve and working its way over my right hearing nerve, pushing my brain out of the way a bit and apparently near my spinal column so all in all quite scary and tricky I'm told. Not the best news when you've only just turned 35.

I'm currently waiting for a date for surgery which should be within the next month and I've been told lots of scary possible side affects and that I may not get the feeling back etc but at the moment I have questions that I don't think my GP can answer so I'm hoping you guys can.

Firstly what happens with my driving license, I've heard from a mate who works with stroke rehab that I can't drive for 6 months, my other half seems to think just don't drive, but surely I need to surrender license? Bit of a grey area. I'm fine not driving as my eye socket numb so have been avoiding anyway plus I work from home permanently but what is the actual legal thing to do.

Also my surgeon said I will feel awful after, but has it affected anyone's mobility, am I going to need a wheelchair or shower stool to sit on for instance when I come home? Who provides this, when will I be told about all this stuff?

Also I'm going to be in hospital for a week, I've only ever been in overnight for a gall bladder removal, any advise on what to take? Am I even going to want to read a book, what do you pack? Fellow ladies what do I need?

It's frustrating that this is happening just as lockdown is lifting so whilst everyone getting more freedom I'm going to have to shelter before and after the op etc.

Anyway, any advice and info gratefully received

X

[KaspianSky]

Hi Emmieheadtrouble,

It can be very overwhelming at first as you will receive a lot of information in one go. A CP meningioma is related to the location as far as I know but it would be worth checking with your specialist as they will give you more accurate details. I got diagnosed when I was 27 with a left frontal lobe meningioma and soon after I had a craniotomy (three years ago).

I remember my neurosurgeon wrote a whole list of possible side effects and I was really concerned but they have to tell you every potential side effect. Some are extremely rare and I would recommend not using Dr Google as I made that mistake. The side effect I was left with was a weakness in my right foot but with some intensive physiotherapy, this issue has improved greatly.

You need to tell the DVLA about your diagnosis as it is a legal requirement, I had to surrender my licence for a year but then was issued a new medial licence which is reviewed every few years. It is frustrating but in your best interests so I would advise that you contact them as soon as possible.

It is much better to be prepared so I got a new bed that was lower so I could get on more easily. After my surgery I had right sided weakness that mainly affected my foot but I was given crutches by my physiotherapist. If you have any mobility issues then a physio will come and assess you and will provide the necessary aids but it is worth asking in advance about a wheelchair. I was given more information after my surgery and carried on going to physio for a few months after.

I would suggest taking a long phone charger so you can use your phone in bed whilst it is plugged into the wall. Then the usual clothes (lots of loose tshirts that go easily over your head) etc and a bag for dirty laundry. I took sanitary towels but the hospital should provide them if you run out. I couldn't read after as I was exhausted, it is important to give yourself time to recover and be gentle with yourself.

I had treatment last year during lockdown and I tried to remind myself that I would be able to enjoy myself soon even if it didn't feel that way! Hope you are doing okay and feel free to ask more questions.

[Emmieheadtrouble in reply to KaspianSky]

Thankyou so much this is really helpful, I'm glad you are on the road to recovery x

[Lytham]

Good luck with the surgery ! I had to surrender my license for 6 month after surgery but DVLA took another 6 months to give it back. I had right facial numbness after surgery but some of it has returned now , apart from not being able to move my right eye brow, but hey ho, a small price to pay x

[Emmieheadtrouble in reply to Lytham]

Thanks! I'm hoping to get the feeling back in my face but my stroke rehab friend has said it could be up to a year for the nerve damage to heal so she's quite good at not sugar coating things, at what point do you surrender it? When you get surgery date? My eyesight is fine and mobility etc

[Lytham in reply to Emmieheadtrouble]

That's good your eyesight is fine, my peripheral vision is reduced but nothing I can't live with. I think I used the op date as the surrender date? x

[Emmieheadtrouble in reply to Lytham]

Great thankyou that was what I was thinking x

[Lytham in reply to Emmieheadtrouble]

Try not to worry too much, a lot of people come through it un scathed x

[BrainBrain]

I had my surgery just over 3 weeks ago. I was in hospital for a week. They will look after you well and you'll be home before you know it. I have small children so the grandparents are still here helping to look after them, and probably will be until I get to the 6 week mark.

You have to tell the dvla about your diagnosis and you have to surrender your licence when you have surgery. If your tumour is grade 1 and you don't have seizures, you'll probably have to stop for 6 months. Assuming you surrender your licence, you can resume driving as soon as you're entitled regardless of when dvla get around to sending your licence back, using something called Section 88. Insurance companies will allow you to do this. Insurance for both our family cars was in my name so we needed new insurance policies. I was allowed to transfer my ncb to my partner which helped.

For the hospital, take lots of pyjamas, dressing gown and slippers. I had a TV in my room. Couldn't really read but I also watched stuff on my phone a bit. Slept a lot too. They won't discharge you until your care is sorted. I have no care needs and have had a shower on my own every day after they removed all the needles and tubes in hospital. Obviously it depends massively on the location of the tumour. Mine affects my eyesight.

[Emmieheadtrouble in reply to BrainBrain]

Hi thankyou so much this is so helpful! I hope you are feeling ok? It must feel so bizarre afterwards

[BrainBrain in reply to Emmieheadtrouble]

It does, but the relief is immense. I find I get easily overwhelmed if anything remotely stressful happens, but it's also amazing what I can do already.