I realise it’s been quite a while. I feel so guilty after all the excellent advice and support you all offered me. I can only sincerely apologise. When I recount what happened I hope you’ll understand why I went silent.
For context, around the time of my appointment I’d just started a new job, and was working with a supervisor from hell. So I was already finding myself traumatised on quite a regular basis around that time.
I saw Mr Axon back in early March of this year, with my partner attending for support.
It went traumatically. As these appointments often do. But this one was particularly traumatic.
I did my best to recount my list of symptoms for him, and he was both dismissive and skeptical. His position was that “vascular eagles cannot occur without the presence of pulsatile tinnitus” and “stabbing pains in the throat”. Neither of which I have - I have normal buzzing tinnitus and the feeling of pressure in my throat only - with pain deep to the angle of my mandible.
My previous concerns were realised and I immediately felt rather foolish and fell apart. It’s in these moments that I start to relive previous experiences I’ve had with various medical professionals over the years and they serve to make me an absolutely traumatic mess internally. I also find that due to this cognitive decline, I can’t defend myself or think quickly on the spot like I used to, and so become quite passive as there’s nothing else I can do.
Despite Mr Axon saying that pulsatile tinnitus needed to be present, I did manage to push him a bit, and he was then willing to conduct a CTv. But considering his insistence that vascular eagles cannot occur without pulsatile tinnitus, and his displaying obvious skepticism, I was left with a difficult choice I didn’t feel capable of making. Especially not while triggered, let alone with mental capacity.
Whilst I was most definitely running from the trauma, I was also facing chosing whether to pay just over a grand for the CTv (money I don’t really have) with a clinician that had just treated me so dismissively or to move on and try to see if there were other conditions I could perhaps rule out first via the NHS. So that’s what I’ve been doing. Only now, I’ve reached the end of that road none the wiser. I’ve realised my mistake.
That appointment was also the first time that my partner has come in to a medical appointment with me and witnessed my difficulties first hand. He was shocked at how I shrunk into myself, and by the end of it was a shell of who I usually am.
The truth is, I’ve been avoiding this forum. I could not bring myself to recount that experience on here until now. I’m embarassed to say that I ran from the experience I had with Mr Axon.
Having now ruled out the possibility of chronic sialadenitis (a shot in the dark) with my oral maxfax team. I’ve realised tonight that I need to force myself back towards the vascular angle. Everything points towards IJV compression. Even more so when you look at my writing ability above from only 9 months ago and compare it to what I’m capable of writing now. The decline is stark. My word recall is getting worse by the week now. It’s frankly terrifying.
I’m at a loss, and truthfully, this morning I am so very close to doing something stupid. I won’t, because I couldn’t do that to my partner. But the number of days I have like this now are numerous and I can’t keep living like this.
This is quite the sob story. I’m sorry for offloading. I absolutely hate being a burden and usually have more spoons so as to not be one. But right now, I’m desperate and terrified and don’t have the ability to sugar coat things. So if you’ve made it this far in reading, sincerely thank you for the energy and time and patience it will have taken.