So many of us have had the same experience when, after being diagnosed with Trigeminal Neuralgia, we finally get our long awaited MRI back. All that waiting, thinking THIS is finally going to reveal why our child is in excruiciating pain. Only to be told the MRI is "Clear". There is no compression. Then, we … Continue reading Do I Have the Right MRI? What If My MRI Is “Clear”?
This may be a little jarring to those of you with younger TNKids, but we are in contact with families of kids up to age 20, and not so out of the realm of possibility at all for older teens. It may also seem inconceivable given how poorly your child is doing and the fact … Continue reading It’s Not Just Kids Being Kids… Recreational Drug and Alcohol Use
I’d say it’s the words we didn’t want to hear, the diagnosis we did not want. But since none of us had probably ever heard of Trigeminal Neuralgia, your first reaction was likely, “Huh?” There is a dearth of information out there, especially good information and especially for pediatric patients with TN. I feel the … Continue reading The Things I Wish I’d Known When My Child Was Diagnosed With TN, alternatively titled, “Do You Doctors Know ANYTHING?”
My family and I have been asked by many people, for many different reasons, why we chose to pursue Microvascular Decompression for our daughter. Friends and family were curious and trying to understand this crazy journey we are on. TN friends and family are looking for information and to see if there is something to … Continue reading Why We Chose Microvascular Decompression (MVD)
We have had an amazing experience this week. We have a secret little corner of Facebook for parents of TN patients. We share info, ask questions, and sometimes vent at the basic wrong-ness of having a child fighting this beast. A couple of weeks ago, one of the families posted that they would be in … Continue reading The Power of Not Being Alone