Thoracic Outlet - My first doctors appointments - Vascular Surgeons.

By the time I saw vascular surgeons [referred to them by my physiotherapist in the late autumn of 2017], my symptoms were starting to progress with pain beginning to intermittently radiate down my left arm. Although there were some symptoms on my right arm, the pain jumped into three areas - my the side of my arms between my biceps and triceps, my elbow and my hand. The surgeons repeated the Roos and Adson's tests and found them to be positive. They arranged for the following:

1. Nerve conduction and muscle activation (EMG) studies of my hands and forearms
2. An MRI of my thoracic area
3. A doppler ultrasound of my arms.

The first test I had was a nerve conduction study of my hands and forearms. Apparently young children are meant to cope with this, but I found it to be unbearable. I had my first round of NCS in December 2017. Here is a video that shows what happens: https://www.youtube.com/watch?v=GalU9SWiYic  This is an American video, but what happened was pretty much the same, but I hated the sensation of my fingers jumping, and it all felt terrible - like electric shocks. The professor who carried out the test said I could stop at any time, but that felt like a bad idea since I knew the information was important. The findings were essentially normal. 

The MRI I had showed in essence that I had 'no cervical rib, no fibrous banding and possibly some 'mild thoracic outlet syndrome' However, there was an accidental finding of an 'endochondroma' or benign bone tumour as it turned out, in the right proximal humerus growth plate. I had to be sent to a shoulder orthopaedic surgeon and then on to a Sarcoma Unit and bone tumour expert. I had a number of x-rays and an MRI scan of this 'tumour'. It was a terrifying time. My GP had rung me, as the MRI reporting of the thoracic outlet syndrome had been delayed, but I had managed to get a copy a few hours ahead of my GP. I remember my thoughts about this as I read about the tumour. 

  X-ray showing my 'Endochondroma of the right proximal humerus - benign'

An extract from my writing about finding the tumour - an accidental finding, but definitely benign:

I was sitting on the Piccadilly line when I chose to open my MRI report. I read it and started to laugh hysterically. Surely this was God’s sick joke? Along with a summative report that said I had mild ‘Thoracic Outlet Syndrome’ which was an expected find; but there was an unexpected find.  “Abnormality seen in right humeral head.” There was a whole paragraph devoted to it – a tumour which included its precise location and size 6cm by 3cm by 2cm deep.

A few hours later before the information had really hit me, I received a telephone call from my GP – did I know that I had a tumour. It might be cancer. He sounded far more alarmed, which was further at odds with the unbelievable calmness that I felt. I said that I had read the MRI report. My GP said that he would refer me to the appropriate services. I then quietly added that I had had some pain in my left breast. I wasn’t sure there was necessarily a lump. My GP said, I will refer you to breast cancer services too. The conversation ended. I was reeling. I knew I had to speak up about the breast pain – because of the proximity of it to my arm pain and problems. Now I had two potential cancerous situations to worry about.

I was just so calm about it. Too calm – if that is not underestimating it. I made a call to my sister and told her. She was amazingly kind and helpful. I thought about not telling my mum, and adding to her burdens, but felt it would be better she knew now – she might find out otherwise and be upset  I had kept this bombshell to myself, without any further support. She was also very calm about my predicament. I felt that whatever happens will be in the hands of fate now, and ‘what is meant to be, will be.’

For the sake of the reader - my breast cancer check was quite normal, although a cyst was found on the right breast. 

The third test I had for my Thoracic Outlet Syndrome was a doppler Ultrasound of my subclavian artery at rest and in different positions. The results made for clear reading. My left subclavian artery was 100% occluded in all provocative testing and 75% so on the right arm. This changed the slant on my diagnosis to my severe, although this was not in fact how the vascular surgeons interpreted it. Initially agreed that I had an overall diagnosis of TOS, but this was contested by a team meeting and another surgeon said I didn't have it, so the overall conclusion in the end was that I didn't have TOS at at all! https://www.youtube.com/watch?v=wfwCsoz3wxg - this is an example of a 'doppler of the subclavian artery. So if I was negative for TOS, what next?