Originally Posted by Sea Pines 50

So, the original injury was an acute trauma and not an RSI (repetitive strain injury) then, is that correct? Involving you hitting your funny bone in a way that was DECIDEDLY unfunny? Was your whole arm involved in the incident? Shoulder, as well?

I'm asking because I may have led you a tiny bit astray the other day when I suggested the possibility of TOS being at play here, and I would soooooo hate to do that. I do think your instincts are right on, and that the upper extremity, neck and head sx you are experiencing are related to the original injury, as well as to the surgery/s you've had. I just don't know for sure if TOS is the right dx.

Dang, and I was so looking forward to a doc having you do one of the clinical tests they typically do to help rule TOS in or out, which would involve you putting your arms and hands straight up in the air in the "stick 'em up!" position for a certain period of time, all the while opening and closing your fists rapidly, after which s/he'd measure your radial pulse (or lack thereof). Thought you'd just be a natural at that one! Ah, I kill me…

On a more serious note, I'm starting to get ticked off at the Workers Comp laws in your state! Do you have a WC attorney working for you, by any chance? Because if you don't, I think it might be a good idea to get one - a good one! This business about not letting you see the doctors you want and need to see will only get worse; next it'll be a hang up approving your meds, your PT, your EMG/NCV and so on and so forth, down the line.

I don't have first-hand knowledge of the WC system mind you, but I've seen enough to recognize when having a legal advocate is worthwhile. And you certainly don't need the added stress of the inevitable battles. Let your legal rep handle those nightmares for you! You've got enough on your plate.

You deserve a good, solid tx plan developed and carried out, on a timely basis, by the best healthcare providers available in your area for the type of injury you have. Period. As I'm sure you are aware, NT has a WC forum, as well as a Caregiver forum (thinking of your daughter here). So I hope those will prove to be good resources for you, as well as the TOS forum and of course here. Please keep posting and let us know how things are going for you, OK?

Take care,

Alison

Originally Posted by ShaggyChic_1201

Hi Alison, you described the joy of TOS so well that I could tell you were a fellow sufferer. I also had both TOS & CRPS. After 9.5 hours of surgery to untangle 7 poor entrapped nerves, the artery and vein, and remove the middle scalene muscle, I came out of anesthesia hearing the surgeon saying, "well, that was the definition of a mess"

Like many, I had a hard time getting diagnosed with TOS, in part because all my arm pain was attributed to CRPS. Finally technology caught up with me and I was able to get a neurography, which is like an MRI for nerves. That was what definitively diagnosed the brachial plexux compressions. After years of being told it was in my head, or to push through the pain, finally there was a neurosurgeon saying, wow - you must be in agony. The 7 years it took for diagnosis made things such a mess.

It is now 8 years after that life altering surgery and I may be back in the same boat. As you said, the tendency for nerve compression increases, and I've already been unfortunate to have needed outpatient surgery to release nerves in my foot and both wrists. I am in a CRPS flare, but my symptoms could also herald the return of TOS.

I'm having my shoulder re-stabilized in the hopes that once the bones aren't rattling, everything might calm down.

Sorry - didn't mean to hijack thread.

OP - Since you are unsure of where the nerves are being compressed, I urge you to investigate the neurography. I'd offer suggestions, but my only experience is with Dr Aaron Filler and folks in San Diego. My data is outdated, so I will be researching to. Perhaps I'll post it if it's not already a sticky in the other forum. Best of luck and non-painful hugs (((U)))