I figured to post here with some symptoms recently, and not so recently developing, which required follow-up for the past several months, more so with recent difficulty raising the left arm, and pain, than the pre-existing neuropathy, partial paralysis in the legs, and limited mobility after numerous chemo, neck dissection, and radiation treatments.

As a result, I had to see a neurologist, who ordered an EEG, electroencephalography, an EMG, Electromyography, a nerve conduction study and neuropsychological testing, while my ENT had an MRI done of the cervical neck to rule out a recurrence, which came back clear.

The EEG, and neuropsychological testing came back normal, but EMG was not, and an MRI of the brachial plexus was ordered as a result, which came back clear for any malignancies, but not with other conditions. In brief, these are some of the findings:

Active left brachial Plexopathy
Distal motor more than sensory polyneuropathy
Left ulnar nerve entrapment at the elbow
Severe left spinal accessory nerve dysfunction

"Needle EMG of multi segmental muscles of the upper and lower extremities, left scapular region was performed. Specifically, left trapezius muscle showed fibrotic changes with no recordable motor units. Left deltoid, bicep, tricep, EDC, FDIC, muscle showed active denervations, increased polyphasia, neurogenic motor units, reduced recruitment, worse in deltoids , biceps and triceps muscle. Left infraspinatus showed irritation and severe reduced requirement. In the lower extremities, sporadic denervations , mild increased polyphasia, neurogenic motor units, mildly to moderately reduced recruitment were recorded predominantly in distal muscles with slight asymmetry..."

"This is an abnormal NCS/EMG examination of the upper and lower extremities. There is electro physiological evidence of active left brachial plexopathy, with more severe involvement of the upper and middle portion of the plexus . There is also evidence of distal, predominantly atonal, motor more than sensory polyneuropathy. There are also signs of severe spinal nerve dysfunction, likely due to his multiple surgeries. In addition, there is evidence of a superimposed left ulnar nerve entrapment at the elbow..."

Light touch decreased-distal lower extremities up to knees
Pain decreased- same as above
Temperature decreased- same
Vibration decreased- same, stocking-glove pattern
Proprioception- toes impaired
Bulk contour- atrophic, severe left trapezius, spinatti, deltoid, mild in distal extremities...
Reduced muscle strength- bilateral plantar flexion, distal upper L extremity...
Reflexes- absent...
Coordination-tandem walking impaired, walking on toes impaired, walking on heels impaired, and Romberg sign positive
Gait-high stepping and medium based
Other- left Horner's sign

I have not yet to seen the neurologist for follow-up, but my proton radiologist said there is not much to be done except go to PT, which I was doing, done before, but had to stop due to the teeth issues, then shoulder problem. Waiting any day to find out the date of my teeth extractions, smother gift from radiation.

On another note, my ENT, and RO, are presenting my case history at ASTRO's 56th Annual Meeting and Symposium held in SF from September 14th-17th, at an educational seminar they are conducting, "Challenging Cases in Head and Neck Cancer." There are hundreds of these meetings, seminars, abstracts, and we may hear about some in the weeks following.

I hate to see some of the things you are reporting, Paul. Once you get past the dental stuff, I can tell you, there are some options. PT alone is tough. The neurologists that studied some of what you are going through haven't dig deep enough and no one else even tries.

You are one tough guy, my friend.

Did your EMG show fasciculations as well?

I forgot to acknowledge you being a case study. I'm not sure whether to be happy or sad, if you know what I mean. I'm glad they are recognizing the miraculous things you and your doctors have done.

Thanks Uptown. None of it is really surprising, and expected. Some, if not all lower body problems, is a result just from the chemo almost 5 years ago. Saturday will be the 5 year anniversary for the last day I worked, 9/13/09. No fascilculatins.