A visit to Rob Patterson, Physiotherapist Orthopaedic Consultant at The Cherington Practice in Bristol

There is a UK Thoracic Outlet Syndrome Facebook support group that I had been a member of for sometime by now. Some people had already recommended the Peripheral Nerve consultant I was already under [unsuccessfully]. However there was another name that positively came up time and time again, and that was Rob Patterson based in Bristol https://www.cheringtonpractice.co.uk/thoracic-outlet-syndrome/introduction/

Despite the fact that this was obviously a private practice, I felt I had too much to lose not to make an appointment.

In early May I contacted the practice and spoke to their lovely receptionist, Ally.  You can tell a lot about a place by the way you are treated by reception. I spent some half an hour on the phone to Ally who said that sadly my story was far from uncommon and that she had heard it far too many times before. She explained the cost of the consultation with Rob, and that the appointment would take up to three hours. I thought about it for 24 hours, and made an appointment for 15th May. I was asked to complete some questionnaires about arm function and pain and questions specific to TOS. I was also asked to send in any letters, scan results and information that I had accrued so far in my 'TOS' journey. I completed the questionnaires and sent all the letters for Rob and Ally's attention in advance of my appointment.

I took the train to Bristol and liked the look of Bristol as a very pleasant taxi driver weaved his way through Bristol on to Henleaze, where The Cherington Practice was located. It was lovely sunny day, but as per usual, I was cold. You can tell a lot about about a place as soon as you go inside - it was very clean, had a lovely atmosphere, nice, but quiet calming music playing, a good selection of quality magazines and nice tea and coffee facilities. Ally was charming - very calm and friendly and really put me at my ease. I was early, but was glad to sit quietly. My appointment with Rob started a fraction late - but this was to allow him the time to catch up on all my notes.

Rob is one of those people that one warms to immediately. He has a gift of putting you at your ease, and is a humble man, who clearly is a leading expert in Thoracic Outlet Syndrome, but is very quiet about it - there is no egotistical surgical type here. For about an hour we talked and I went through the story. Rob had lots of questions and a lively discussion ensued. Rob then carried out a very detailed examination of  my arms and thoracic area, whilst also taking into account the situation with my back and [numb] left leg. He used a 'SATS' monitor [used in hospital, usually] to monitor my oxygen levels and heart rate. He invited the lovely Ally back into the room to take note of some of the readings and the test showed some similar findings to the Doppler Ultrasound test I had had back in early 2018. Although, interestingly,  I believe the findings on the day were worse on the right side [as I write this today, I am waiting for my 'big' report to come back from Rob'.

Once all the physical tests had been complete, Rob sat me down and told me the truth. He said that I had Neurological Thoracic Outlet Syndrome NTOS, which accounts for 90% of findings. Definitely no Venous TOS, which was about the only good news. He said that I didn't actually have Arterial TOS, however, the nerves responsible for the subclavian artery were causing the artery itself to compress, hence the positive arterial tests, although I didn't actually have ATOS. He said, 'there was no doubt about me having bilateral NTOS' and that we were now 'far beyond' 'conservative measures.'. He said that I might have an extra scalene muscle and that my pec minor was 'like a rock'. He thought I might need first rib removed. Rob explained I would need to have a further ultrasound test with some injections that might actually temporarily relieve my pain. This would happen in Bristol at a private hospital [with further costs attached to it]. In addition the ulna nerve was slipping out of my elbow and wrist on both arms. He concluded by saying that I would definitely need surgery and that this would take place in either Oxford, Wolverhampton or Liverpool depending on the findings of the next set of tests. Surgery would be on the NHS and we would need my GP to make the referral, but that I wouldn't have a long wait. After surgery he did admit that things would be tough for the first 8-20 weeks and that I would need an imagery based physiotherapy, but that by the six month stage I would be doing strengthening work. Both sides would need surgery, but that we would be starting on the left.

I left the appointment feeling a real sense of relief that I actually did have Thoracic Outlet Syndrome after all, that I had been believed, and I felt really high and very happy that someone was on my side and going to help me. I also felt angry at the other surgeons. It was agreed I wouldn't have the NHS physio, or continue to see the peripheral nerve surgery. It was very satisfying emailing them to say that  I was discharging myself, and would continue to explore other options. I also felt angry with the way I had been treated by all the surgeons I had seen, including the vascular ones. The only person who consistently believed me had been my pain consultant.