Hi Tracey,
Oh, rubbish that you had to leave your job. I'm finding that out now as well. Had hoped that I could go back to it, but using the computer is a sure way to make things worse. What do you do now? I find day-to-day living severely affected.
Not had TOS diagnosis. Mentioned it to shoulder surgeon and he said was dependent on what you did with your arms (well, urm, that's what I've been saying for 3 and a half years), old pain consultant said the area (brachial plexus) was 'irritable' in 2008 after his examination put me into hospital because of the flare-up, which GP and I thought was brachial neuritis (sounds like TOS is the same, but without the immuno-response cause). So uncanny when I came on here just how many symptoms fit - heavy arms, iron rod / stab at cervicothoracic junction, winging scapula, wasted trapezius, scalenes in spasm, raised rib, cold, blue hand, anterior chest pain (even admitted for a couple of heart attack type attacks in 2008!), searing face, ears, neck and upper back, feels like breathing fire, right hemisphere headaches, etc...). I thought I was the only one in the world with such a weird collection of symptoms, but jolly good (not for sufferers) that I'm not. And it spreading from right to left. Also, seem to get mild swelling when go into flare. Also, ants crawling nerve pain up back of neck and out across top of neck-shoulder then down back of shoulder blade. Also, icky nerve bundles at scalene, front of top of humerus, palm of hand, wrist, and base of thumb. And on, and on... Had felt so alone before found this site. Mind you, still do, on this side of the pond, bar you Tracey. Sounds like those in the States are actually listened to a little more. I've had denervations along all cervical and thoracic spine that I needn't have had. I do often feel that consultants don't listen to what I say, so I've tried writing it down and then they just ignore that as well. Anyway, enough ranting.
I think I meant on the neurolysis side the "Freeing of a nerve from inflammatory adhesions" rather than killing it. Not sure whether to go for this, which seems the most conservative of the treatments or with the scalene reduction and possible rib removal. Don't know how to find out the pros and cons for me and what I need, when I can't even get a diagnosis here!
You are so lucky with physio that's relevant. My physio is still sticking with the CRPS diagnosis, so it's trying to do repetitions that flare up the nerves. So she and pain consultant are like 'well, muscles flare up after they haven't been used', but I'm very sporty and know what that sort of muscle pain feels like, and this ain't it! So now I just don't do them if they flare it up. Find cold water helps (swimming pool) and clavicle support done up tight (raises shoulder and brings it back, but weakens good left side).
Tempted to see Christopher Jenner and your physio. What botox did he do? Did it help? And on the physio side? Rather disheartening re Carlstedt. What did he say about TOS? Did he offer any tests / physio / surgical options? (Doesn't sound like it.)
Please feel free to private message me - I don't think I can mail you yet, because not written enough messages. Or you can email me at zoestockwell then the hotmail bit (won't allow me to write it, 'coz I've only posted 5 messages). Just bought Dragon Naturally Speaking software - it makes sooooo many funny and infuriating mistakes.
Thinking what other career I could pursue - grumpy mum in pain seems to be top of the list at the moment. Seriously, can only think of dog walking (1/2hr or maybe 1hr a day max.) or dog breeding (cute Cavalier has been great through this, along with family). Something that requires minimal use of the arms and lying down and relaxing. Hmm, can't think of many jobs like that! Aaargh.
Wonder if just proper physio, directed at the actual problem, would help... Be nice to just be believed by a consultant / physio re the symptoms. That's where the EMG results were useful - suddenly you're not treated as such a looney. Appalling; my symptoms haven't changed, but the reaction to them has. No wonder chronic pain sufferers have psychological problems. Oh, just be cheery, and the pain gate theory means that you won't feel your pain so much. Oh, so it's my attitude that's causing me pain. I even had one CBT guy saying that my relationship problems were causing the 'pain in my neck'! Oh dear, think I've still got a lot of ranting to do. Hope you and the forum don't mind.
Best wishes,
Zoe
