Recently Diagnosed Trigeminal Neuralgia

[CindyC__0]

  I was in an auto accident 7 years ago and went through 3 lower lumbar surgerys with lamenectomy, then 3,4,5 fusion with scraping of scar tissue from nerves.  I developed chronic pain and did all that I could to improve.  Pain Management over extended period did the trick. I even returned to my business and playing tennis with "zero" pain.  During this time, I had so much pain and it was felt that probable muscle tension spreading was causing pain to travel or be felt in my upper body and face.  I would go to Primary Care and be put on antibodics for infection.  Then went to a sinus specialist with test resulting in "no problem".  I finally decided that I must have teeth problems and started having gum surgerys and many root canals.  No relief.  Back was great but my head needed to go!  I hear these are typical symptoms of TN.  About eight months ago I developed vertigo and was put on antivert which did not help consistently.  Finally my primary care doctor send me to an ENT. Again they could not find a problem but verified the vertigo.  I began to be in severe pain and would go back to my endodontist.  He remarked one day that his father in law had TM.  About a week later (exhausted and exasberated) he ask if he could refer me to a neurologist.  He did. At first the neurologist just continued the antivert and started me on neurontin. No luck. I began to have severe weakness in my left arm.  On mothers day, I was suppose to meet for dinner at 12:30, I remember nothing till 7:30 that night I managed to make it downstairs and told my daughter to take me to the ER.  I could hardly speak.  They admitted me to the hospital.  I could only slur words, my mouth felt like somebody poured gasoline in it and lit a match.
  The neurologist tried tegretol and I had a bad reaction.  He did blood work, 24 hr. urine, MRI, cat scan, EEG, and EKG. His diagnosis on release was atypical facial pain.  He put me on 2 anticonvulsants, valium, and antivert and antinausea med.  I went back one month later and my speech had improved but had severe weakness in legs, and hellish pain. I had complete amnesia for month of May minus a few bleps.  He said only thing that showed on MRI and cat scan was a small scar about the size of a dime (probable old injury).  He told my daughter that surgery usually was no helpful and carried high mortality.  My pain worsened and my daughter took me back in and he said that microvascular surgery was only option. At this point to spite the risk Im willing to try almost anything, have not been able to work for 6 weeks, can't sleep, eat, brush teeth, put powder on or even touch my face.  Is 6 weeks sufficient time to decide on surgery over other treatments?  And does a clear MRI always rule out MS?  So many of my synptoms seem similar to MS and I discovered that MS patients can have TN too.
  Emory University in Atlanta's specialty is not neurology would you suggest traveling for a second opinion?  I know this has been lengthy and I am deeply greatful for your time and interest.  Thank you.
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Dear CindyC:
Your problems are not typical of Trigeminal Neuralgia.
This does not mean you do not have TN. The fact that you had one sided weakness, episode (s) of loss of consciousness makes me suspect something else.
I was wondering about the type and location of so called scar in your brain? Because some brain scars could lead to seizures.
My suggestion is that you get a second opinion before getting the surgery for your TN done.
If you would like to travel to Cleveland you may call 1 800 CCF CARE for an appointment at the Cleveland Clinic. We have a comprehensive neurology center.
Good luck