Thursday, 30 May 2013

Stimulation operation denied :(

I couldn't write this yesterday, as I was too upset and too annoyed but it seems that I have been denied approval for the permanent stimulator despite everything being done to get it approved and my consultant stating that this is what I need next!!!!
Apparently, the funding hasn't been approved as NICE state they have acknowledged the procedure for chronic migraine and not occipital neuralgia. So, why oh why did my consultant say it had recently been acknowledged! Getting my hopes up when actually the research that has been studied is for people suffering chronic migraine!!! That is NOT what I have so I can't really be angry with the people who have decided not to fund it BUT it leaves me with nothing!

I had been given a hospital date...told that everything will be done to back me on getting this gone....spoken to friends & family, as well as to my work about it....had my haircut and treated in preparation for not looking after my hair for a while...and it has all been utterly pointless!!!!! :(

Back to square one!
I now don't know what my future holds.
What do I do about work? They only thing that was keeping them happy was that occupational health said I would probably be back 100% after the stimulator operation.
How do I begin to plan a future...a family? I'm 33 now and was thinking that in a year I should be well enough to start thinking about these things but now how can I plan that sort of change in my life when I can't cope most days!?

I just have lost my positive outlook on all this right now! I can't see past living day to day.
Whatever I can now do to help my pain, no one seems to be rushing to answer my calls about the next steps! These people who work as PAs for consultants have no idea with the lives they hold the key to. I need answers ....and I need support!

I am so angry!
This has helped to get some if it out but who knows what my future holds now!

I'll update on the 'alternative' plan whenever it is I end up finding out about it!!! :(

Friday, 10 May 2013

NICE acknowledgement of occipital nerve stimulator implant system

Great news!!!
Finally NICE (National Institute for Health and Care Excellence) have finally acknowledged that the stimulator implant system actually works to help people suffering from ON.
The system has been acknowledged by them for spinal nerve pain for years! Not sure why its taken them so long, to be honest! 

The guidance NICE give, as well as the data they collected during their research, makes an interesting read.
Here's the link if you're interested;