Great news!

I'm getting my op after all!! Ok so its not DBS, its Motor Cortex Stimulation instead, but it going to be sooner than waiting and fighting for years to get DBS!

I went to see my Welsh Consultant, Brian Simpson. He's been treating me on and off for years and is always very supportive of my treatment choices. I was hoping he would offer me MCS, but I'd not said that to anyone so it was a bit of a shock for my parents who came along. The stats aren't as good for MCS, but they are not bad, and its a less invasive operation as the electrodes are placed on the dura of the brain not inside it. Its a bigger op as they have to take out a flap of skull rather than use bore holes like DBS, but the chances of being woken up during surgery are lower.

So I'm delighted, scared and happy all at the same time. This op will address the constant pain I have around my eye, temple and bridge of my nose, and is not likely to affect the stabbing pain I have. But I hope that reducing the constant pain will make day to day life more bearable and I will be able to come off some of the drugs and increase my activities, even get a part time job!!

So great news - the waiting list is quite long for these kind of specialist treatments - so it would be minimum 14 weeks and more likely to be over 22 weeks. Whats the betting it'll be either on the weekend of the EE conference, or on my Birthday!

Niki xxx

So Sorry!

I've been very lax at posting here, and I'm sorry.

It has been a strange period of time, with Cirrus finally getting over his pneumonia and sorting all my gran's things out. My face has been pretty bad which never helps.

I did manage a short ride on Cirrus which felt amazing, but have not since, I'm really unmotivated at the moment, I guess its all got a bit too much in a way and I'm naval gazing and dealing with each moment as it comes.

On the plus side I've done a whole load of cross stitch!! Hey ho.

Anyway I have momentous news, which I'll deal with in another post in a bit....

Niki xxx