So it turns out a software update was exactly what I needed. Hopefully at least, we will see how it all settles over the next few days, but I’m so grateful that I’ve done no damage and surgery isn’t required.
It was explained that as the tissue heals and scar tissue forms there wires can migrate very slightly, even less than 1mm, and that this situation is very normal and why the stimulation changed. Though why no one could tell me that before now to ease my fear and anxiety over the last week I do not know. I’ve journaled several times this week, very dark journals that I haven’t shared, where I essentially admitted I was scared of myself. Horrendous thoughts and feelings that could have been avoided by a simple email.
The software guy explained and did a diagram on what my wire set up looks like which helped immensely. I have two horizontal lines of wires which are all connected to my nerves, via 16 contact points. They can then use a combination of these contact points and programmes to target the right area of the nerves, by trial and error during the session. The aim is to target the root of the nerves sufficiently to pick up all the branches that come off it. It’s now set that I do not feel the stimulation, which I miss already, so as not to overstimulate the nerves. When pain is high I can set it to the ‘tingle’ programme for constant stimulation, which I will feel as it’s at a higher level, but only for a few hours so as not to overstimulate the nerves and increase pain.
He then pulled my surgeon in to answer more of my questions regarding the tightness of the wires. The advice is to keep going with ROM exercises and massage my neck with bio oil to help release them. I should eventually have full ROM so I need to work on releasing the wires as of course the righter the are the higher risk of pulling them.
Ultimately I feel a lot better. Not with head pain, that’s still mad we played with the nerves for a few hours. But in myself to have the reassurance that it’s hopefully fixed and will work for me again, along with the care advice. The saddest news is that when I’m back on my feet I won’t be able to lift to the level I did – I will have to accept that and build a safe training programme that I can still get the same enjoyment from as I once did. But to be able to train at all is worth it.
Overall it’s great though I would deny my disappointment in the system. Someone could have reassured me or answer my previously emailed questions. I should have been given sufficient information long before now, I should have known to massage my neck and use bio oil, I should have known many things but the bulk of what I do came from my own research, not information given to me as the patient.
But that is done and cannot be erased. The system is broken, so many know this and have suffered as a result. I mean this has all happened because I took the pfzizer vaccine and we’re stuck in a broken system that don’t know how to admit that or treat it. But that’s a fight I and others will continue to have for years to come. What can happen is I can now focus on rebuilding the state of my mental health and I can take this situation as a sign to stop trying to rush recovery. I can use today to turn this all back into a win and be grateful for that in this moment.