Reflections on my diagnosis of Neurological Thoracic Outlet Syndrome - NTOS

I had a large glass of wine and a steak in Bristol before taking the train home. I felt very high [not related to the alcohol particularly], but everything to do with being believed by Rob Patterson and being told I really have NTOS and that I hadn't made anything up, my symptoms were very real and not psychosomatic or any other such nonsense. He made reference to my hands which were ice cold, suggesting I also have Raynolds Syndrome. I felt positive and happy and just so glad that help was coming - even if the road ahead was going to be long, rocky and painful. I reflected on all my losses - firstly as a Bowen practitioner, which I had stopped doing in May 2017. Rob said there was no way I could be doing that right now. He said that it could take me up to two years to get over all this completely and regain all the strength I have lost in my upper limbs. He said that strength training wouldn't happen until at least six months post-op. Then there is the fact that I will most likely need surgery on both arms. A lot to go through.

I am now at the stage where I can only just about touch-type. Texting and being on my phone has become increasingly difficult. I haven't washed my own hair for nine months now. I struggle to open bottles, tins, medicines, bleach as all these require much more strength. My biggest loss of all has been in not being able to play my recorder anymore. I absolutely loved playing my recorder, and I was playing Grade 8 level pieces at the time I started to get into enough pain that I had to stop playing. This happened gradually over the last 12 months. I now hardly play at all, if ever. I miss it very much and hope that I can return to playing in the next 12 months. I would also like to be able to cook more easily and of course manage my own hair again.

I also felt very angry with all the experts  I saw, barring my osteopath and the physiotherapist I saw back in October 2017, and my pain management doctor who I felt always believed me. I had then seen four vascular surgeons, also a rheumatologist has had a look at me, then the peripheral nerve surgeon and his team, and a neurologist before I got to see Rob who finally confirmed I really did have NTOS. This has been typical of my story in the body who was not believed.

Whilst I was with Rob he asked if I would mind helping out with some TOS research in Oxford which I am now doing next Friday. I also need to visit Bristol again on the 10th June to have some scans of both arms and some injections. I will post more after I have been to Oxford!