It is several years since I posted. I have had quite a tough few years and thought I should return to this supportive community.
My story is that I had a cervical disc replacement in 2016 which lasted 5 weeks before subsiding and my neck becoming unstable. It was fused in early 2017 and all seemed fine until a few months later. Hereafter my real problems started as I moved house and health authority.
I started to get pretty severe neurological symptoms along with appalling pain and other problems but the local neurologist declared nothing was wrong and I was discharged. I appealed to the hospital but they were not prepared to listen. For the past few years I have been trying to see a spinal surgeon but neurology seemed to block it so finally in December saw one privately. The tests I have had have cost me a fortune but as I am so restricted, can't drive any more and may have to move again, which will break my heart, I felt that I had no option.
I went out of the area and indeed I was right, something is badly wrong. A spect ct has revealed a great deal and as of this week I am much closer to some answers. Either an infection in the fusion area, possibly a failure to fuse or both of these. I am also seeing a neurologist who has already identified why I am likely to be getting the neurological symptoms I have which are related to my neck but complicated by other factors. Things are now moving quickly and they have been happy to move me back under the NHS and the neurology and surgery team will make a decision on my care next week.
I am lucky I had the funds to cover the costs of the tests I had and I accept that my case is complex but my local hospital could have done the tests themselves and I could have had better support with day to day living. I first asked for basic advice locally three years ago to try and prevent the attacks I have but after 12 months was advised I needed a diagnosis to get any help. The damming diagnosis of nothing being wrong resulted in no help at all. Hopefully now things should get much better whichever way it goes - the surgeon has said that if the fusion has failed to heal there may be little they can do as it is the second failure but at least I should be able to get some aids to help me a little.
Through all this I have tried to stay positive and motivated. I have always enjoyed sewing and when I can have made lots of items including scrubs and laundry bags for the NHS. I have also built a lovely circle of friends in my new area although like most folks are having we rely on Zoom to communicate. I hope that you are all okay and managing through this challenging time.
Apologies for the long story!