Originally Posted by Sea Pines 50

I hate to come out of left field at you like this, but I've had too much coffee this morning and your questions rang a bell in what's left of my brain! ha ha

Take me back to the beginning. What was your original dx (diagnosis), was it cubital-tunnel syndrome? I ask because it seems you obviously had some type of ulnar nerve compression going on, with sx (symptoms) serious enough to warrant surgery. At the elbow.

Leaving the subsequent CRPS sx aside for the moment, if I read you correctly, you are still experiencing progressive atrophy of your hand and forearm muscles on your affected (surgical) side, despite the transposition of your ulnar nerve at the elbow. Hmmmm….

You are also now experiencing sx higher up: occipital headaches, neck and shoulder issues, etc., and would like to know if these are related to either your original RSI or a possible spread of your dxd CRPS…

I would like to alert you to another possibility. The original ulnar neuropathy COULD have been coming from neural compression much higher up; namely, in the lower trunk of your brachial plexus. The brachial plexus, as you may know, is part of what is called the thoracic outlet, and is a neurovascular bundle comprising cervical nerve roots C-5, C-6, C-7 and C-8, plus the T-1 nerve root, the subclavian artery and the subclavian vein. The 3 main nerves which run down your arm branch out from this bundle: the ulnar, median and radial nerves. Compression in this area is called TOS (Thoracic Outlet Syndrome).

TOS mimics several other disorders and is difficult to dx. I cannot tell you how many people have been misdxd with cubital- or carpal-tunnel syndrome, or cervical radiculopathy, or tendonitis (of the shoulder, for example), have surgery, continue to have sx… get worse… only to find out that the correct dx all along was TOS. And yes, TOSers are not exempt from CRPS, unfortunately. I suffer um,… I mean… have the honor of having both syndromes myself, as a matter of fact.

On top of being hard to dx, there is a certain amount of controversy in medicine about TOS, which you should be aware of if you want to look into this at all (for one thing, you'd want to make sure any doc you sought treatment [tx] from specializes - or at least believes in TOS) as you continue to seek the best tx plan for yourself, because I have to tell you, some of your sx do sound like they could be coming from TOS.

I swear, Officer, I'm not making this up! NeuroTalk has a TOS forum, which contains a number of "sticky" threads at the top, providing all kinds of helpful information, should you care to read up on the subject (esp the last one). Or, you could just check out a few posts in the main part of the forum, to see if anything resonates with you.

Lastly, for what it's worth (and maybe this comes under the category of 'don't be too mad at your doctor if it turns out you do have TOS'), there is a phenomenon called "double crush," where an individual can have nerve compression in more than one place in their body - in the neck AND at the elbow, for example, or in the thoracic outlet, at the elbow, AND at the wrist (OK, OK, that would be "triple crush"!!!). I've read that if you have nerve compression in one spot you're actually more susceptible to have it in another. Ain't life grand?

I'm no doctor, so feel free to ignore me if you want. Just trying to help if I can. Either way, I wish you an awesome recovery!

Alison