Hi
Not been on here for ages as I've had problems getting logged in to NeuroTalk but I too am based in the UK. There don't seem to be many of us but a few others have posted over the years I've been on here (since 2008). I've posted previously but basically had both neurogenic and arterial TOS which took a long time to get diagnosed - and didn't until I saw Prof Bernand (now retired) at Guys and Dr Holmes (great neurologist at Guys&Thomas). Was living in Glasgow but now in London. Had my first rib resected in August 2008 which made a huge difference. The surgery made a huge difference to me but I have developed some scar tissue which has left me with chronic neuropathic pain but surgery was still the right decision. Good to hear others experiences too and if anyone wants any information about what I've learned over the years about NHS/meds, just let me know!
Jenny
Quote:
Originally Posted by RedLantern
Hello - I'm from Nottingham and was diagnosed with Neurogenic Thoracic Outlet Syndrome late last year. I thought I would post on here as it looks like UK TOS sufferers are rare species, although perhaps there are others out there who haven't been diagnosed yet. I know it took me a while, and I feel fortunate to have found a doctor who was familiar with the condition.
I'm 26, I'll be turning 27 the day before my surgery (which is on the 26th March). I've long had problems (stiffness/weakness/'thin-ness') with my right hand, and various cold pains in my right arm and upper back. I'd put it down to a combination of sport injuries and a fall on my wrist I had many years ago. After speaking with many doctors, and some nerve tests in my hand that didn't get to the root of the problem, I eventually gave up on there being a particular cause or any treatment.
Then I noticed about 18 months ago, that the muscle was wasting away on my thumb - eventually I was referred to a hand specialist in Derbyshire, although by the time I got to him the atrophy on the base of my thumb was quite severe. I'd lost over half of the mobility in it as well. This specialist sent me for more nerve tests, but this time also in the neck and upper arm areas (not just hand)
So what I thought was a hand injury turned out to be something I hadn't expected at all. I went for an x-ray, which confirmed I have a partially formed cervical rib - I've obviously had it all my life but never knew. At some point, either from an injury, sport (tennis), over-use or combination of factors, this sharpish cervical rib 'piece' has started to press down on the nerve quite considerably. I also have a significant amount of scar tissue going down my chest (I'm not sure if this has played a part in any problems - I'm seeing him next week to answer a few questions I have)
He made me do the 'East Test', whilst measuring the oxygen going down my arm, and it dropped to around 60% within a minute - which he said was the lowest he'd seen. It was a bit surreal, but he was quite honest that surgery was likely going to be the only way to prevent my thumb getting worse. From the severity of the oxygen test (and the atrophy already), I do see it as probably my best shot. My doc does hope to recover the last year of mobility in my thumb, but I'm going in with cautious expectations.
Hopefully I won't suffer post-op as much as those who have first rib resections - it's probably fortunate I don't have a fully formed cervical rib too.
I did like that the specialist described my attempt at a cervical rib as being like a 'council which laid down the cement but never built the house'
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