Brenda Verle Marshall, TN Patient

A View from the other side

My husband and I attended the 2006 TNA Conference in Portland, OR; September 14-16.

Just as the 2004 Orlando, FL Conference offered helpful information in the presentations, the Portland Conference was equally informative. Because I am now pain-free, this conference was a challenge for me since most of the presentations were no longer relevant.

I was stricken with TN early in 2003; first on the left side then two months later on the right. Since the sudden violent onset, we had difficulty getting help in our community because of a lack of knowledge of TN in general but bilateral TN in particular. These circumstances led us to the local support group where we learned of the upcoming 2004 Orlando Conference. We decided to attend and gathered much needed information there.

We spoke with many TN sufferers, caregivers, and with several doctors who were well versed in the complexities of TN. I was able to properly investigate all avenues of treatment offered and decide on a course of action that would the most help to me and to my family. I chose MVDs and a neurosurgeon to do them. Both surgeries took place in 2005; I have been pain-free on the right since April 2005 – the left side since December 2005. Being pain-free is nothing short of joyous, but I felt a debt to TNA and my local support group had to be paid. I went to the Portland, OR Conference believing that I could offer both encouragement and hope, not realizing the difficulty my attendance would bring to me.

While listening to other TN sufferers it was as though I was reliving the pain all over again. It is probably normal for those of us who succeed in becoming pain-free to disassociate ourselves from any all reminders of what we have already been through. Yet there is a responsibility to all the other current TN patients.

We all have garnered useful information, support, advice and answers from our local support groups and from TNA.  If we are fortunate enough to successfully beat TN, we need to find comfortable ways to help current TN sufferers. There is also another reason to stay involved.

At the 2006 Conference a number of physicians expressed their disappointment in the small number of former patients who became pain-free who respond to questionnaires. These questionnaires are extremely important as they can more accurately assess the success rates of different procedures and provide other information as well such as post surgical side effects. Those of us who have made it to the other side can provide much needed data; it would behoove us to do so.

Maybe TNA can emphasize the importance of these surveys and questionnaires and work with their medical advisory board to get better participation from former patients.  There is also another avenue to explore.

The biennial and regional conferences should provide additional forums for the pain-free so that their messages can get out. More forums for caregivers and supporters are also needed. These very important people are vital to the goal of becoming pain free yet they are often overshadowed because of the intense nature of the patients’ conditions.

I want to take this opportunity to thank my local support group, TNA, and my neurosurgeon for helping regain my life. In addition my local primary care physician, neurologist, and dentist deserve a thank you as well. A special word of thanks to my husband and chief supporter, Tom Kruse; my kids, Vincent, Heather, Valarie, and to my friends who have rallied to the cause with their patience and understanding.

I wish to share my victory over TN with everyone.

Updated 10-28-07