Being sent to a Neurologist for TOS

In early 2019 I had another pain admission for arm pain. This took place at my local hospital where they had a pain management programme in place created by my pain management consultant from another hospital. They had already followed this in the autumn of 2018 when the healthcare assistant made me wash my own hair with terrible results. However, I arranged for my own carer to wash my hair so that there wasn't any chance of a repeat of that experience. The admission didn't help very much and there was a 6-8 week period where I didn't improve. By this stage I was hardly playing my recorder, seeing less of other people and often spent days in bed in severe pain, or very fatigued and sleeping to recover. During this time period I saw a Neurologist who was very thorough and looked at all of me, including taking into account my back problems - a healed disc prolapse at L5, the legacy of a caudal epidural injection in June 2018 had left me with a numb L5 dermatone (area) of the left leg. The Neurologist concluded that, I should be given physiotherapy by an expert in TOS and that if that didn't help, they [the peripheral nerve surgeons] may only find the source of my problems by exploratory surgery [by guessing] what was causing the problem, but they should exercise caution given that I had fibromyalgia and hypermobile Ehlers-Danlos Syndrome.'

I felt semi-hopeful that they might consider surgery - but I was pleased that at last someone had realised that physiotherapy would be a good idea - a bit late in the day though, I thought.

By one Sunday in March I could bear it no longer. It was a beautiful day on 24th March. I rung my local A&E and they said it was very quiet. I had done this numerous times in recent weeks - but they always said it was busy, and I was too fatigued to get myself to hospital. On that day I felt awake enough and had sufficient enough energy to do what I knew I had to do and to go into hospital for some serious pain management. This time I was in for 15 nights and the admission was more successful and gave a a bit a of a longer respite, although by this time, unbeknown to me at the time, it was all becoming increasingly late in the day for my Thoracic Outlet Syndrome, as I was shortly to find out to my cost. At least nobody made me wash my own hair!