Today was a monumental day for me. I met my neurosurgeon, a man of very few words, who is so laid back he’s practically horizontal. He said a maximum of 5 sentences to me, the longest being 6 words: ‘well, you’re on my waiting list.’
I will be having the ONS implant surgery within the next 6 months, though he hopes it will be sooner.
I have fought so hard for this. I’ve tried so many other non surgical options, literally every one available, plus I had neurosurgery. Nothing has worked and every one of them made me worse. When I first had the vaccine my pain was a 4-6/10 and I had good days. Now I haven’t had a good day since September, before that my last was in April 2022. My daily pain is 8/10. Constantly.
I tried all these options, even though my neurologist told me they had little hope of them working and that the hope lies with the implant. But they were hoops I had to jump despite each one making my life and pain worse. And the implant might not work either.
Now I’m here, over 2 years later, waiting for my letter and a trim from the NHS barber. I’m elated because I have truly had to fight the system to reach this point. It’s been damn hard work. I harassed my medical team constantly to get here as fast as the NHS systems would allow.
I just can’t help but spend my time day dreaming about what to do with my life if this surgery is a success. What do I want to do for work, what is important for me to do with my time, where do I want to be. So many things to consider and I just have absolutely no idea. I could be 6 months away from a complete do-over that I am terrified of wasting.
But as my surgeon said, let’s get the implant programmed and working first.