Originally Posted by rich88

Hi guys, Richard here, looking for some advice on where to go next With doctors, physio, and potentially surgeries.

Using dictation to write this, so sorry for any errors.

A bit about me; I have been suffering with what my pain specialist believes to be thoracic outlet syndrome for two years now, and haven't worked for a year.

Symptoms started as a bit of pain in my right shoulder after a days work, or waking up with a bit of pain. This gradually got worse To now where my neck, right shoulder, right arm, right hand, and wrist, Burn, tingle and hurt constantly.

My job is on a Minesite, I spent a lot of time at a desk, and driving off-road. Later on, desk work became unbelievably painful.

I have had MRIs, x-rays, CT scans, nerve conduction studies, of my neck, chest, and shoulder. None of these scans showed any abnormalities, other than some bursitis in my right shoulder. The TOS diagnosis took a year and a half!

A shoulder anthroscopy removed the bursitis, But didn't do anything for the pain. Later injections into my neck facet joints did help the pain- C6-7 injection turned off the pain between my shoulder blades.

The pain specialist wants to inject my scalene muscles next with Botox. If that doesn't work then I guess surgery- since they don't know what is exactly wrong it would just be a general poke about.

at the moment I have been prescribed lyrica, and a anti-depressant nerve agent called Allegron- both these helped initially but now don't seem to do much. On top of this I have the opioid pain killers, tramadol, and muscle relaxant's. I only take this from time to time when it's bad.

Day to day I take a pilates class in the morning , Recommended by physio-I find the gentle stretching helpful, but some exercises aggravate it. After that I take a spa/sauna. This really helps to relax the muscles. After that I take a rest, then take a run or walk, then do some more stretching, and back to the sauna in the evening. I find keeping moving helps. If I have an evening or afternoon sat on the sofa watching TV it really aggravates my neck and shoulder.

The questions I have for the Forum are;
1 which specialist should I be seeing? Is it a vascular surgeon? Neurologist? Neurosurgeon? or should I stick with my pain specialist? I don't feel my TOS has been throughly diagnosed, and my hand and forearm pain properly investigated.

2 my neck seems to be the primary cause of pain now. It's weird since it started as a shoulder problem. Has anyone else had this migration of pain?

3 which doctors are best to see for report writing? I am about to go to war with an insurance company for liability. I think my pain specialist would do a good report. But it's not really her area of expertise. Would a neurologist be best? The independent medical investigator I saw hardly gave credence to my work duties causing the TOS-he was a consultant occupational physician

If you have read this all this, thank you. I feel a better for having got this off my chest, and shared amongst people who can relate.