New to brain tumour

I'm Wendy. I had a 40 min seizure at work rushed to hospital had all scans found tennis ball sized tumour. Long op to remove. I've found getting back to 'normal' so hard and have now been diagnosed with epilepsy. Want some people to connect with.

[Kirk5w7]

Hi Wendy, welcome. You'll find people will contact you, we're a friendly bunch. Any questions just ask, if you need to let off steam that's fine too we understand.

Janet x

[shaunmcg]

Hi Wendy

welcome!

I think we were all a bit scared and lost at the beginning and still now.

Any questions just ask and someone will try and answer.

[cat3]

Welcome Wendy. I was lucky enough to be spared seizures after a bleed on the brain, so I can only imagine how horrible they are, and how it feels to be diagnosed with the condition.

But most brain injuries result in other common after-effects such as headaches, memory deficits, balance & emotional problems etc.............

So hopefully you can connect with others here for support, reassurance and friendship. Cat x

[randomphantoms]

Hi Wendy and welcome.

Janet and Shaun have said it and I will just add that you can download the leaflets from Headway.

Especially useful if you are going through this on your own without specialist rehab help.

Love n hugs

Xoxo

[Silmarillion]

Hi Wendy,

It will take some time to recover from the big surgery that you've just had! We are all mostly in varying stages of recovery from something or another.....I hope you find some support here. I have found everyone on this site very helpful and kind

[bonfire]

Hello Wendy and welcome to a lovely bunch of people.

We all have similar stories and are united in our highs, lows and what it is like to be on a journey to create a new life and new identity.

Best wishes

Bonfire

[jayne_h]

Dear Wendy,

I am not so sure about epilepsy, but I wrote a post about MindAppNL, a charity project set up by my former colleague, Fred van den Broek, to help brain tumor patients. A crowd funding campaign and sponsorship by companies like ING is allowing a team to build the MindApp which is designed to help brain tumor patients help cope with treatment programs, follow up and monitoring by doctors. MindApp will be piloted at the VU Medical Centre in Amsterdam. I wrote to the foundation recently and Vincent van Dijk, the communications manager, told me they were putting the finishing touches to the app soon. The face book page has a video on a preview of MindAp and I know there are features coming on it to monitor epilepsy. (It's the coming soon video on face book). If you think MindApp might help you or would like to share news about it with your doctors, please feel free to contact the MindApp people via the face book page or by contacting Into The Clear Foundation. The facebook page is here:

facebook.com/MindAppNL

Get well soon

[jayne_h]

Oops Wendy, I forgot to mention some of the titles on the app preview are in Dutch. If you watch it, it is the section with questions 1-4 and it says: "Hoeveel epileptische aanvallen heeft u vandaag gehad" (how many epileptic fits have you had today?"). This is a checklist for the doctors to monitor the patient remotely.