My blog post about TN and the TNA national conference 2010

Imagine suddenly experiencing a painful jolt that is shockingly intolerable and indescribable at the same time. A zap that is so intense and unexpected that it can throw you to your knees even before you knew what had hit you.

The immediate after effects of post traumatic stress and the anxiety of considering another zap of this pain is beyond coping with.

Then you learn this horrible pain has a name: Trigeminal Neuralgia; also known as tic douloureaux. Trigeminal Neuralgia is considered the worst pain known to mankind. I heard a Neurosurgeon describe it as The Mother of all pinched nerves.

A neurological condition caused by a branch of the largest of your cranial nerves being pinched. The only hope of dulling the intensity of the pain is taking large doses of anti seizure medications that are known for their numbing and often disabling side effects.

This rare condition affects only 1 in 15,000 people. The paralyzing pain is most commonly felt in the face or jaw.

When you are suddenly dealt this blow, Then the shock of knowing you will continue to endure episodes of this pain is as emotionally traumatic as dealing with the pain itself. There is nothing more isolating than living with a condition invisible to others, which changes everything about your life. There is hope in knowledge and support in the company of others who have experienced this monster and understand.

This is where the Trigeminal Neuralgia Association comes in by drawing together the Physicians who treat this condition and the people who suffer. TNA has a great website full of articles, research and stories of others who have survived TN. They offer a discussion board so that patients can support one another. Also offering conferences both regional and national to bring together the patients and the Physicians who present advancements in treatment.

Gathering together with others who have experienced this pain and those who understand is a family reunion of sorts.

I can’t imagine anywhere else where hundreds of people are so focused on a presentation while at the same time many are holding scarves to their faces, grimacing, others holding suckers of potent opioid medication between their lips.

These people have been forced by pain to come to the understanding of medical procedures and treatments that most have never heard of. Where else can you go into a room with hundreds of people who are sharing their stories of microvascular decompression surgery, percutaneous stereotactic rhizotomy, glycerol rhizotomy, balloon compression; and actually understand what these things mean. All with the common interest in a condition that affects so very few.

Yet Tommy and I were enormously grateful to have been given the opportunity to come and experience our 2nd National Convention of the Trigeminal Neuralgia Association.

Our conference was offered at the prestigious Mayo Clinic at Rochester, MN. There was comfort in gathering with others who know first hand about this horror. We felt immediately like family when meeting others who have or still are experiencing this indescribable sensation.

We also felt it almost a mission to attend the conference with a success story. I had brain surgery (MVD) for my trigeminal neuralgia in 2006 and have not had the pain return. ((My Story here)) And without the TNA I may have not known this surgical technique was even something to consider. The sad fact is that once people do get relief for their pain they tend to move on with their lives and no longer show up at TNA events. Then those who are suffering and hearing about the treatment options available only look around seeing primarily those who have experienced failure of treatment and are still in pain.

We learned so much and met so many wonderful people. I hope you will take time to check out the TNA’s Website and become a little more aware of the fact that there are people who suffer the unimaginable and survive.

The above blog post is dedicated to David Simmons who is the 1st TN sufferer to give me hope. He introduced me to the Dr. who ultimately stopped my pain. Today (publishing day for this post) is David’s 7th year anniversary being pain free after his MVD! Thank you David… Thank you Dr Peter Konrad.