I’ve got more than enough worries at the minute but it now seems I have another one to add to the equation.
I was told in November by my neurologist that Occipital Nerve Stimulation surgery, which is my last available option had currently been put on hold by the NHS because the NHS hadn’t decided whether they are going to fund it anymore and until they had decided nobody new to list was getting funding for it.
I was put on the list late November and I haven’t heard anything about it since, I just presumed that nobody was getting funding at the minute and the surgery was still on hold for the time being. But I’m a member of a Facebook group for this type of surgery and today someone in the UK posted about getting it done, so I commented asking if the surgery was still on hold and nobody seems to know that it was on hold in the first place. Leading me to believe that maybe it’s not on hold anymore. They told me to ring my neuros nurse so I have emailed her, but I kind of want to know the answers to my questions sooner so I might just ring them tomorrow and find out what is going on.
I worried that I haven’t heard anything because they haven’t actually put me on the list, but then at the same time I’m thinking that I am fairly new to list that they probably haven’t gotten round to me, but I’m torn between thinking the two. I just really want to know what’s happening with the surgery if it’s still on hold or whatever, and if it’s not on hold where am I on the list, how long will it be for me to get funding, how long will it be till I can get the surgery done.
I’m doing better emotionally overall, but when the pain gets bad I go downhill fast, and the pain gets bad a lot, if I could have less bad days that the surgery could give me then I would be doing a lot better. This surgery could potentially help me so much.
I understand the road to getting surgery is a long process but I’m starting to worry that I have been forgotten about and that is why I haven’t heard anything.