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Atypical TN or something else?

by JSJW, Nov 18, 2007 05:22PM
I have had facial pain for 15 years and am only 29 years old.  I dealt with what they kept diagnosing as ear infections for years.  I went through numerous doctors calling it ear infections, TMJ, etc. Then, I had wisdom teeth removed and the pain became quite severe.  After a trip to the ER, the doctors at the time called it glossopharyngeal neuralgia.  We tried all the typical meds that didn't work.  They then did surgery which they claim to have sectioned the 9th cranial nerve.  The pain came back much worse.  So, I started over with new doctors.  The last diagnosis was about 4 years ago as trigeminal neuralgia.  After more med trials and trigger point injections, I was sent to Pittsburgh where they did MVD on the 5th cranial nerve.  This surgery at least fixed, for the most part, the surgery site pain from the first surgery.  However, about a year later, the pain was back.  The doctors in Pittsburgh now state it is atypical TN and I can only try pain management (AKA meds).  The pain is mainly located in the jaw and that is where the shock like pains are.  But, the pain goes all over the right side of my head - face and back of head.  The pain feels like my head is being crushed.  Needless to say, I miss quite a bit of work, especially when the seasons change. I also am scared to plan any 'fun' or important activities since I never know when this will show up.

I'm trying to understand if this is truly TN or could anything else be causing this pain that may be treatable.  One neurologist finally checked for MS and said I did not have it based on a MRI.  

I'm also trying to understand a few other things if this is TN.  I had a skull fracture in the general area when I was a child.  Some doctors say this could have attributed to the early onset of TN and some say its impossible - which is it?  Next, can sinus problems aggrevate the TN?  Again, some doctors say yes and some say its impossible.  Third, is it possible for atypical TN to hurt the entire side of your head?  Some doctors say it should only be the face and others say its very possible.  Lastly, will this just get increasingly worse or is there any hope of having a normal life?
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