Head and Neck pain help

[Don-Mikulec]

  My family has an inherited pain problem that has been traced back to my
  paternal great grandfather.  This problem has aflicted my grandfather,
  my father, uncle and myself.  The pain symptoms are similar to stylohyoid/
  carotid artery sydrome with pain on the left side of the head, ears, neck,
  sinuses, and mastoids.  There is also swelling on the left side of the neck
  and face as well as the left eye swelling shut.  Tilting or turning the
  head to the right reduces the symptoms.  The pain feels like a bad bruise
  or as if the area is asleep (pins and needles).   Most of the problem is
  on the left, but occaisionally on the right.  Excessive talking and
  excessive head and neck movement cause the symptoms to get much worse.
  TMJ has been ruled out.
  One thing my father, uncle, and I have in common is a leision anterior
  to the carotid, level with the lower teeth in the jaw, and in the region
  of the sympathetic nerve plexus.  This is the area where I feel most of
  the swelling, pain and pressure.  The mass is palpable on my father and
  uncle, but not me.  Radiologists have said this is a lymph node and is
  nothing to be worried about.
  My father and uncle have had doppler flow studies performed and in both
  of their cases, less blood was moving through the left side of their
  head and neck than the right.  In my dad's case, the left side was 1/3
  the blood flow of the right.  In my uncle's case, they found blood flow
  that was "anti-grade"(?) in one of his arteries.  The doctors have told
  me I am too young (age 35) for the test.
  My dad and I have both been through pain clinics.  In both our cases it
  was determined that the sympathetic nerve on the left side is somehow
  involved with our problem.
  In August of '96, my dad convinced a vascular surgeon to remove his
  leision.  I don't know what the pathology report said, but after the
  operation he said he felt much better and everyone noticed he was much
  more active.  A follow-up doppler flow study revealed that his head and
  neck bloodflow had evened out.
  As far as I am concerned, an examination by a vascular surgeon said I
  was "atypical".  A neurologist examined me and noticed that my neck and
  the area under my ears had very decreased sensitivity.  A medical student
  pointed out the leision on my MRIs and the neurologist said, "It's
  nothing."  
  I believe the leision is the problem.  Do you know of any conditions of
  genetically inherited growths or tumors in the neck?  Are there cases
  where lymph nodes can "go bad"?  Is there anything I can say to get a
  doctor to at least do an exporatory and possibly remove whatever the
  leision is?
  Could you please send any response to my email address.
  Thanks In Advance
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Many aspects of what you describe don't make physiologic sense. However, one alternative possibility comes to mind, particularly given that you report this as a familial trait. Look into the possibility that you might have cervical dystonia. Dystonia involves abnormal muscle contraction, so it can be painful and also appear to have a mass. Most commonly, people report jerking movements of their head or tonic abnormal position (head turned to one side, etc).
This is a total guess, which will require a visit to an experienced neurologist to figure it out. My understanding of vascular pathology, sympathetic innervation, lymph nodes, tumors, etc, does not match the symptoms and signs you report.
As you know, this information is provided for your medical education. Any specific comment regarding diagnosis, prognosis, and treatment options must come from your doctor after appropriate evaluation. CCF MD mdf.