Story about Trigeminal Neuralgia , Arnold Chiari.

3 Rare Diseases...seriously??

Dec 22, 2015

By: Julie


I was first diagnosed with acute febrile neutrophilic dermatosis, also known as Sweet Syndrome. It is an autoimmune disease affecting the joints and skin.  About a year later, I begin having facial pain - yet all the while thinking it was a tooth giving me trouble.  Following two root canals, two tmj injections, sinus surgery, glyerol rhyzotomy, and finally a tooth extracted (all in 4 years), something had to give.  I had been a crash test dummy for all the "gold standard" medications for this beast called Trigeminal Neuralgia, but the pain was getting worse and more steady. My final straw was almost being referred to a pain management doctor, which I knew would only cause me to be a zombie. 

Today, I am five days MVD post-op, and I am forever grateful to Dr. Peter Konrad of Vanderbilt University for having the courage to suggest MVD!! He is a wonderful, caring doctor, whose only interest is making the lives of his patients better! I still have some weird, tingly, squeezing sensation, but I am hoping it will subside as time goes on and the healing process continues.  Dr. Konrad found a large arterty growing through one of my trigeminal nerves, one pressing on another area, and one nerve so frayed it could not be fixed, only cauterized. It feels really good to know it wasn't "all in my head!" 

I don't even want to think about where I might be without the patience, unconditional love and understanding of my husband, John.  He constantly covers me with support and tender loving care. 

 

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