Six months post-op (left) and 3 months postop (right) for Thoracic Outlet Syndrome

https://www.youtube.com/watch?v=HZjwrIQSOsA

The above video diary explains where I am now at - six months post-op left, and 3 months post-op, right.

Unfortunately things are not good. I have had severe sternum and rib pain now for three months and yesterday had an MRI scan of my sternum, the results of which will take 5-10 days to arrive. At the same time I also had a repeat kidney function test, that my pain consultant had requested.

I have severe pec minor and left arm pain, although the right arm is slightly affected. I strongly suspect that pending trying botox first, that if that doesn't help that I might need pec minor surgery. I can hardly raise my left arm above my head which is a significant deterioation since my surgery when I could easily and effortlessly elevate my arm. I have become increasingly kyphotic since the pain in my sternum begun, and despite the one physio exercise I have to active my rhomboids it is not really making much of a difference. I am also wearing a rucksack-like contraption to open out my shoulders since I am too allergic to tape. I am now also getting more headaches, and have at times had some near black-outs with low blood pressure and definite Postural orthostatic Tachycardia syndrome. I've honestly only just made it in time to bed on some occasions.

Last week I had facet joint injections for my spine, but unfortunately these have had no benefit to my back pain which is a real disappointment. I am due to see my new spinal consultant in April.

More importantly, I am due to see Mr Garnham on 18th March, and hopefully I will have my MRI results by then. Something urgently needs to be done because I am declining at such a rate. I have also lost my voice for a few days - so perhaps I have had a virus, laryngitis at the least.

I am not sure what my prognosis now looks like, but at the moment I am worse than I was before my first surgery, although my right arm thankfully remains OK. So far I am not sure how much I have benefited from surgery, although in the early days post-left (first op) I was doing well until the second. I certainly look much iller now in video diaries compared to six months ago. I hope there is a positive way forward and much needed help very soon.