Help for keira

First of all,I want you to know that Keira is the most polite,kind hearted,beautiful person inside and out you could ever imagine.

The last 14 months have been so so difficult for her,to say the least.

23rd June last year Keira was experiencing headaches. It was when we had real warm weather. I took her to the hospital where they done a ct scan and broke the news she had a large arachnoid cyst on her brain. They referred her to a neurologist and sent us home.

They day after she was very wobbly on her feet,so I took her back to the grange,and again they sent us home.

Day after that,she walked into my bedroom and said she couldn’t see. She was getting vision blackout every time she moved or turned for roughly 20 seconds each time.

Took her back,and was told if I too her back again we wouldn’t be seen.

So I took her to a different hospital. The Gwent.

We walked upto ophthalmology and I broke down at reception and begged them to see her.

From there,it was frantic!

I honestly can’t thank the team enough because if it wasn’t for them I honestly do not know what position we would be in now.

They admitted her to mau,and in the meantime was continuously trying to contact the neurosurgeons at uhow.

Keira had 4 lumbar punctures,which were horrendous. She was then diagnosed with IIH (idiopathic intercranial hypertension) with the opening pressure of 56. It’s meant to be roughly 14.

They’d never seen a pressure that high before.

She was put on medication to try and reduce the fluid in her brain but every time she took them she was really poorly and couldn’t keep them down.

They tried this for a few days until on the 1st july she was blue lighted to the Heath.

There she has an icp bolt inserted into her brain to have a constant measure of the pressure on her brain.

They then decided she needed an open brain surgery to have a vp shunt. It’s a device that sits in her brain,with a catheter to transfer the fluid into her abdomen.

Luckily most of her vision was regained.

In the October,Keira’s arm started to go numb. It then travelled to her fingers,face and head.

Took her back to the hospital and they didn’t even do a ct scan on her,no bloods nothing.

Few days later it was still the same,so I took her to the grange,they contacted her neurosurgeon and they agreed to do a shunt series to make sure the shunt was still working (that was not our issue). It came back okay,so again they sent us on our way. We’ve had many appointments with our neurologist and others and all they say is,they don’t know why she’s getting this numbness.

So why not do scans or investigate?? They have basically left her to go through this on her own. With no help other than me constantly researching but being not being able to go anywhere with anything I find because the neurosurgeons keep dismissing and denying to do an mri.

In the December,they said they would do a ct scan to reassure me,and then told me not only does she have one arachnoid cyst but she has 3. But said there would be no follow up!

In the January,Keira still has all this numbness but then it travelled to her left foot.

All this numbness is on the left side of her body.

I have fought and fought. Doctors tell us to go to neurologist,neurologist tells us to go to doctors.

I asked for a second opinion last October but still haven’t heard anything.

I am fighting a loosing battle!

The numbness in her foot comes and goes but now it’s back,hence my appeal for help.

We need to go private. It’s the only way I can think that can help us!

Keira also has nystagmus ( can sometimes indicate a defect to the back of the brain)

She also has sooo much pressure at the base of her brain/top of neck.

So she realistically needs an mri on her brain and spine. And then someone to reset her shunt back to original settings as the magnetic force can change it.

If you’ve got this far,this is where I’m hoping/praying I can get help.

I’m in no position to be able to afford this.

I’d sell everything I own in the hope to make all this go away for her but all I have to my name is my car and if I sell that then I won’t be able to get her to appointments.

Please please please,I beg,if you could afford the bare minimum could you please help my girl get the help she deserves.

Anything is a huge step towards helping her/us

I am asking for donations towards a private mri on her brain and spine and possibly a neurologist consultant to see where we go from here…

If you can help I honestly thank you from the bottom of my heart ❤️