A negative diagnosis for Thoracic Outlet Syndrome [TOS] - Now what?

And so I had received a negative diagnosis for TOS, although when I told my pain consultant about the positive results of subclavian artery occlusion, she thought that this showed a definite problem of some kind and continued to believe that I had symptoms of brachial plexus symptoms and continued to try to help me as best she could.

I started to do my own research and found a peripheral nerve surgeon from another London hospital and in June 2018, when to see them for a second opinion.

The appointment was not easy. I saw the Registrar, who tried to blame my pain and symptoms on 'chronic pain' and my other two conditions, namely hypermobile Ehlers-Danlos Syndrome and Fibromyalgia. However they did agree that I was 'Roos and Adson' positive. They also commented on muscular wasting in my right forearm and hand that nobody else [physiotherapist, osteopath or vascular surgeons] had noticed before. There was comment on lack of overall strength, but nothing specific. They decided that I need a repeat MRI scan with my arms in the air to show whether the subclavian artery occluded for sure, and also repeat nerve conduction studies. They apologised that I would have to 'start from the beginning again' with all investigations. At that time, things were still bearable, so I felt OK about it.

Initially there was going to be a six month wait for my surgeon to oversee the nerve conduction studies, so it was agreed they could take place sooner with the same doctor who did all this surgeon's testings. I had the MRI about two months later. Unfortunately it showed that I had no occlusions whatsoever, I say unfortunately as I could see where this was going and the more damaging blame on my chronic pain.

I always regret that I did not pester this team for some physiotherapy during my visit in June 2018. As I was starting to get weaker, and this being made all the worse by having hypermobile Ehlers-Danlos Syndrome and hypermobility hEDS - I should have been referred for physiotherapy, but they [the doctors] didn't even suggest it. This is what a hypermobile joint looks like:

The next round of nerve conduction studies was even worse and more painful than the first. This was possibly because by now (autumn of 2018) my pain had increased. Nevertheless the outcome of the studies was all 'completely normal' I was beginning to become more despondent.

I play the recorder - an instrument often negatively associated with school children, but it is actually a lovely instrument, particularly the alto or treble recorder which I play the most and is at a lower pitch than the descant. This picture shows a 'top hand right-hander' which is what I am. In the baroque era you could play with either hand at the top, but this became standardised the same as the flute, so that the left hand 'should' be the top hand of the recorder. I had made a lot of progress since I had picked up my recorder again in 2016 and by mid 2018 I was starting to have significant pain at times in playing. This lead me to cancelling lessons, and I had to decline the opportunity to perform some pieces at the Stroud Green Music Festival in 2018. By the autumn of 2018, playing could cause serious pain flare ups.