Atypical Trigeminal Nerve Dysfunction

[Dwight-E-Wadel-Jr]

Posted By  CCF Neurosurgery MD on February 10, 1998 at 17:31:02:

In Reply to: Atypical Trigeminal Nerve Dysfunction posted by Dwight E. Waddell Jr. on February 10, 1998 at 13:26:32:

: To whom it may concern,
  About 25 years ago, a relative had a aneurism diagnosed and clipped (left frontal lobe).  
  There was a great deal of pain involved below the left eye, but the
  aneurism was NOT pressing against the optic nerve, and the pain associated
  with the aneurism is a bit of a mystery to this day.  Twenty five years later the
  (subject suffered no motor or cognitive deficit as a function of the surgery)
  subject has complained of a "Pulling Sensation" on the left side of her
  face and a sense of slight topical numbness.  The pulling sensation is
  now accompanied by a sense of increasingly severe vertigo when her body
  experiences any sort of acceleration and a prevailing fear of falling is
  developing  Multiple CAT scans and an angiogram show no micro strokes or
  tumors. After months of trying to track down what might be going on, (original CAT done 11-1996)
  the general concensus is "Atypical Trigeminal Nerve Dysfunction."  I suppose part of the
  "atypicalness" is a lack of pain.  The pulling sensation (the patient says,
  "when I look in the mirror, I half expect to see the left side of my face to be
  sagging.") is increasing in severity as is the vertigo.  Tegratol has been mentioned
  but there are contra-indications with the elderly (subject is 70).  Doctors at
  the Medical collge in Jackson, Mississippi recommend a trip to Mayo.  Are these
  symptoms really that atypical? I was hoping with the huge connectivity of the Net,
  someone might have similar symptoms documented.  
  I am not satisfied with the "you may just have to learn to live with it
  diagnosis."  Would nerve conduction test be discriminating in any way?  
  There is no tumor compressing the nerve, (via angiogram)but is it possible
  there is some transport mechanism affecting the signal
  transmission.
  Dwight

[CCF Neurosurgery MD]

Dear Mr. Waddell:
It seems that your relative's problem really started 25 years ago and has progressed since then. As you may or may not be aware of, the practice of neurosurgery over the last 25 years has really changed dramatically (for the better). I suspect what happened (based on the location you give) that there was probably injury to the fifth nerve at the base of the skull due to dissection or retraction. In most instances, this sort of injury (which occurs very infrequently now because of improvements in neurosurgical technique) recovers nicely. In some cases for unknown reasons, problems persist and worsen with time. This is what I believe happened to your relative.
The treatment for disorders of the trigeminal nerve encompass both medical and surgical options. You mentioned that there was a problem with tegretol. There are certainly other medicines that can be used and there are also different types of surgery which can help with this.I agree that you should not accept "you may have to learn to live with this" as an answer.
If you are interested in being seen at the Cleveland Clinic Foundation, you may call [phone]. Several of the neurosurgeons have outsanding expertise with trigeminal neuralgia. Drs. Lee, Barnett and Miller would be able to provide you with all the possible options.
I hope this helps.
Good Luck!