Hi everyone! It has been a little while since I have been on and things have changed. As y'all all know, getting straight answers from your doctor can be tricky to say the least.
Brief history: Had Ulnar reconstruction and a submuscular transposition on my left elbow 10/21/13. CRPS signs were seen within 3 weeks of surgery. So far the areas that are an issue are my left hand up to my elbow. Have only had large amounts of PT and several sticky creams that have not helped. I have also tried Neurotin, Lyrica, and Cymbalta. These have not really made a difference either. I am deathly scared of narcotics. I spent many years as a Police Office and have seen the effects of addiction.
I have lost most of the muscle in my hand and can see a difference progressing in the loss of muscle in my forearm. The discoloration, clammy skin, and temp changes are present but the swelling is usually mild to none.

Now to my questions

1. I have noticed a marked increase of headaches which usually start on the same side of the injury at the base of my skull. Do any of y'all have experience with this? Could it be related?

2. Along with the headaches I now have a lot of burning in my shoulder and neck as well. Is it spreading? Please say no lol. My doctor just says she doesn't know...yet.

3. The normal pain which we are all aware of (burning, stabbing, shocks) is now accompanied with what I can only explain as that of a bone bruise that extends from my wrist to my shoulder and now other joints as well. Another question of "Is it spreading?"

4. My new CRPS/Pain "specialist" has stated that she wants me to try a mix of Neurotin and a muscle relaxer (the name of which I can provide if Workers Comp EVER approves it ) but if these don't work she wants to look at a nerve block in my neck. Anyone had one and what were your results? I am not very keen on the idea of having needles in my neck !

Thanks for the read and any help is always appreciated!!

Hope y'all have a great day!!
Irpuregenius

Hello. I can't speak to all of your questions. However, my RSD started in my wrist and spread to my shoulder with the burning pain so it's quite possible. I am currently undergoing stellate ganglion blocks in my neck to try to help with the pain. I am not on any meds. The blocks so far have not helped but I've only had two. As for the procedure of having the blocks I was very nervous but can assure you it is very simple and nothing to worry about. My dr gives me a mild sedative, does the injection, and I'm awake and out the door (with a driver) within the hour. My arm has been partially numb after each one for about 12 hours. Good luck to you!

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

thanks!! A little less nervous now

THANK YOU!! That took a lot of time and I appreciate the information!!

I can start at the beginning with your questions
The original injury was a hyperextension of my elbow. Somewhere in there the nerve was damaged as well as the ulnar side ligament damage. That led to the first Ulnar Transposition. Due to the instability of my elbow and the persistent nerve pain, we eventually agreed that we would try to move the nerve back and hide it in the muscle and then take part of a tendon out of my forearm and drill a few holes in the ol elbow, weave the tendon piece through it, then screw the tendon down to hold it.

I was told that they believe there was a crush injury at the elbow. Later on after the CRPS diagnosis, I was told that there may be a second crush site in my wrist but they won't do any invasive tests right now.

As to the upper issues of burning and headaches, they have started in the last few months. I am not sure why but it seems to me that it would be related.

I have had one awesome Ortho Dr that I see regularly, one awesome Neuro that WC doesn't want me to see, a really, really, did I mention REALLY poor excuse of Neuro that WC picked, and now a new CRPS/Pain spec that WC sent me to last week. Jury is out on the last one as I haven't had a large amount of communication with her.

I have not had a full ENG since the CRPS set in and hope that maybe they will do one soon or any test that can tell me more about the damage. If this crap is spreading I need to know. I have a special needs daughter to support and I need a plan here. The 1st Neuro they sent me to started to do an ENG but stopped 2 sticks in and said that it was pointless "your nerve dead. 100% dead. No get better." was his position on the test lol.

I will look at TOS as well. Any answer is better than no answer

Thank you!! Makes me feel a little less nervous! Hope they find some longer lasting relief for you soon

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)))

Kool! I am headed back to the CRPS specialist in a few weeks and I am going with a list of questions. I have been trying to get to a specialist since Jan 14 and this is the first one wc will let actually treat me. Scary since the treatment would have been way more successful early on. I have been told that with nerve injuries after 6 months the treatments aren't as helpful.
Thanks for the info!!

i had 3 sets of those blocks. In the 18yrs i have had r.s.d. I had very little to 0 relief. Good luck
lisar624

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