There are a serious of issues addressed on my stroke resource page that I wanted to give further individual attention to various conditions I wish doctors would more readily address.
Central Pain Syndrome (CPS) (previously or also known my many different names including Thalamic Pain Syndrome, Dejerine-Roussy Syndrome, Posterior Thalamic Syndrome, Retrolenticular Syndrome, Thalamic Hyperesthetic Anesthesia, Central Post-Stroke Syndrome)
- this information was so very, very hard for me to
find. After seeing literally dozens of specialists, I realize that
several have used various wording to allude to and even work on addressing this condition,
but no one has still ever given me the actual name that I've had to
research for myself. (As of this writing, I hadn't yet been given a formal diagnosis, though my doctor later confirmed it.)
According to the Central Pain Syndrome Alliance, "Central pain syndrome (or CPS for
short) is a neurological condition caused by damage to or dysfunction of
the central nervous system (CNS), which includes the brain, brainstem,
and spinal cord. This syndrome can be caused by stroke, multiple
sclerosis, tumors, epilepsy, brain or spinal cord trauma, or Parkinson's
disease." WebMD reports, "Pain or discomfort may be felt after being mildly touched or even in the
absence of a stimulus. The pain associated with thalamic syndrome may
be made worse by exposure to heat or cold and by emotional distress.
Sometimes, this may include even such emotions as those brought on by
listening to music." See also The Central Pain Syndrome Foundation and the CPS page at Pain World.
From my research, even though the name is often linked to a specific
part of the brain, the thalamus may not be the only area of brain injury
that can, again according to my reading, in 40-50% of strokes, result
in this condition. According to a friend on Facebook (I have not tried
this for myself yet), "Charting
and coding errors do happen, especially with central pain syndrome
since some medical folks are not aware of the medical terminology for
this condition. The diagnostic code for Central Pain Syndrome is 338.0."
Here is my personal account of how this condition can impact me (keep reading past the TN information, though don't skip it as that will be a great point of reference for my CPS description): http://strokeofgrace.blogspot.com/2013/09/problem-of-pain.html. You will also find yet an additional CPS link listed there.
Additional links of Interest About Various Chronic Pain Conditions:
NINDS Central Pain Syndrome Information
Brain Study to Predict Pain
Central Pain Syndrome
Still trying to figure out what's going on with my Trigeminal Nerve.
TMJ we think, but the strokes messed up my ear, neck and shoulder too,
so it's not just classic TMJ! My biggest help, thus far, has come through facial pain massage therapy. Update: I am still dealing with
significant TMJ jaw pain, though this has
recently been linked (by my neurologist) as also having atypical trigeminal nerve involvement/pain. A friend suggested The Facial Pain Association for support.