Cervical spondylosis C5-C6 and CRPS type 2, thoracic outlet syndrome

Dear Doc,

I have a long-standing problem (diagnosed) with the neck, and after a trauma event, developed a thoracic outlet problem RH, which was eventually surgically treated by 1st rib-resection, brachial plexus neurolysis and scalenectomy. I never really recovered. I have subsequently been diagnosed as CRPS type 2, and await the possible implant (DBS) to the sensory thalamus for pain and tremor and allodynia control.

I have weakness and numbness down the R leg, and tremors and 'sparks' not just down the R arm but often in the Left. I feel a weakness (heaviness) in BOTH arms, and loss of sensation (leaden numbness with tingling, heavy aching) and a loss of strength not only in RHS now, but also in grip of L Side.

It is important to note that in the RH only the 3rd digit functions 'normally' or as close to normal as can be although when I use a keyboard and hit each key I feel it as pain stabbing right into my face. The right side of the face also feels odd, and looks to MY eye as if it is hanging more loosely when I smile, but my doctor just laughed at me when I mentioned it.

My R ear gets very very cold, and I often have excrutiating icey cold heat stabbing through my neck, blurry vision, and migraine type pain across the R side. My swallow action feels choked up most of the time. It is important to note that my voice often won't come out of my throat, and I feel as if I have a grip around the neck all the time.

It is apparently the CRPS which makes the R arm often feels like a towering inferno, and aches, pulses with sparks, has stabs going down it,tremors and is highly sensitive to light touch, and to cold. I wear an arm covering even in 35C degrees and a scarf around my neck 24/7, even when sleeping. When sleeping I cannot bear the feel, and subsequent pain, of the R arm against my right thorax/abdomen region. The thumb and 1st finger have almost no strength, and the 3 and 4 are cramped with the thumb and 1st in a claw-shape most of the time.

Previously neurologists have told me there is nothing they can do, even though the neck aches and is often in spasm and I have restricted movement. I have had 3 whiplash accidents, aside from the assault which induced the Thoracic Outlet problem.  And as I cannot use a neck brace any longer because to inability to tolerate the weight (pressure) on my R side, I am rather stuck for tools to help me.

(Bladder and orgasm control are fragile. In fact my pudendum feels numb most of the time but I have thought this a result of the morphine and the CRPS-spread down into my leg. I also often get severe pain under the R breast, a pain so intense my breathing stops. I have had mammograms and there is only extreme loss of breast tissue, normal but rare, and fibrous cysts, which are as "normal"as the loss of 2 bra-cup sizes not evident in the L. In other words,"what is my problem!")

The last spinal evaluation was 5 years ago before the Brachial Plexus clean-up. Apparently this early degeneration is common (I had a plastic back corset from 19-22 for the L4-L5, L5-S1). My father has cervical dorsal horn repair-work done  recently and disc-architecture work done/inserted. I imagine I have inherited his lousy back, as he has lower back disc problems his whole life, and endured surgery when the methods were more barbaric than todays' :-)

QUESTION: 1. Do I insist on a full re-evaluation of the cervical problem before the neurologist does the neural pacemaker implant?  
2. What is the statistical LIKELIHOOD, in your mutual estimations, that MOST of what ails me is a cervical problem, with the CRPS a secondary one?
3. And obviously I would like to know whether a surgical intervention might reduce any or all of the symptoms?

HOW do I best approach a specialist about this, once there? Most medical people just look at me (I look good, and take care with my appearance when in public), listen to my tale, and think: 'Hypochondriac, but we will humour her'. That is until I quote papers at them in order to demonstrate that I have some basic understanding for what I am consulting them about. Then they just get irritated instead of mutually interested in the PHENOMENA, and trying to solve the problem in the best way.

For example, I apparently have some irregularity in the blood vessel geography down into the R arm (I had a full hospitalised procedure and was CAT (?) scanned by a specialist).
I also have a strange non-malignant yet growing)?) tumour in the L humerus, which apparently will result in the necessity for a steel rod at some point soon. Could THAT be causing the problem in the L hand/arm?

There are other problems, but all of this sort of nature.  I have been diagnosed with 'secondary Fibromyalgia' and aside from high does brufen, morphine, amytriptyline and the godsend drug, Lyrica, without which I would not be coping as I (sort of do), I am still strong-minded and rational. I mean I do realise the seriousness of my case, but I do try to keep my good days productive and creative despite being given medical leave from my PhD research.

Your help in analysing the case, and providing some *direction* based on probability would be helpful.  If you have the time, would you please enumerate exactly which tests or scans I should insist upon in order to put my mind at ease regarding the cervical dynamics?

My apologies for the lengthy email. I tried to be specific.
Thank you *very* much, again,
CybermMeg