“The best treatment for TN must be tailor-made considering the age, health, beliefs and values, general fears, and emotional health of the patient.”
Dr. Brian Copeland, Chief of Neurosurgery and Medical Director of Gamma Knife, Mid Michigan Medical Center, speaking at the TNA National Conference in September 2008.
“Patients must recognize that relying on medicine and surgery alone will not take care of their pain. Instead, patients must be concerned about their whole-health, including making realistic changes to their lifestyles, seeking stress reduction, eating well, exercising and drawing upon their spiritual resources in order to reduce their facial pain.”
Dr. Joanna M. Zakrzewska, Consultant Oral Medicine, Facial Pain Lead, Eastman Dental Hospital, University College of London, speaking at same conference.
My own journey in search of relief from my trigeminal neuralgia leads me to agree strongly with Dr. Copeland and Dr. Zakrzewska. My strongest advice to you as a person who has neuropathic facial pain, or as a family member or friend who wants to help, is that you must be actively engaged with the treatment process. This, basically, means doing three things:
- Learning all you can about your illness* and about treatment options that may exist.
- Being an active participant in all decisions about your care.
- Maintaining your own medical records, separate from any records kept by physicians.
*You might be surprised that I refer to facial pain as an “illness” because some may argue that an illness is something that causes destruction of bodily organs or tissues. However, the term "Illness" refers to any “unhealthy condition of the body” according to the Merriam-Webster dictionary. In the medical dictionary, Biology of Health, illness is defined as , “a disorder of health indicating impaired functioning that is typically manifested by distinguishing signs and symptoms.” Facial pain readily falls into the “illness” category.
Personally, I also find that “illness” better describes my journey with pain, rather than “disorder.” I think of “disorderly children”, or “disorderly conduct”, or even a disorderly room, when I think of the term “disorder”— all things that can be corrected with some hard work and perhaps some needed control. Facial pain doesn’t give a whit about how hard you work, nor is it tamed by any self-willed efforts to control it on your own. Facial pain is the result of something having gone amiss with one of your cranial nerves (i.e.” impaired functioning”). It is an illness.
Two General Rules of Thumb:
1 - Don't Rush into Making Treatment Decisions
Treating facial pain is as complicated as diagnosing facial pain. Before I developed TN, my idea of treatment went like this:
- Step 1: I feel sick...
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Step 2: I go to a doctor...
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Step 3: He/she prescribes some medication or a treatment...
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Step 4: I undergo the treatment...
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Step 5: Voila! In ten days, I'm well again!
Unfortunately, this is not the case with facial pain. As hard as it is to accept, at present there is no known cure for facial pain -- meaning there is no known treatment that makes it go away completely and permanently. This does not mean that you must expect to suffer constantly from pain. What it means is that you will likely need to use various treatments over the course of your life to manage your pain, even if you have relatively long pain-free periods.
2 - Consider a "Team Approach" to Treatment
I have benefited greatly from having several people involved with my treatment, working together to seek and implement various ways to help me manage my pain and to live well. These have included: physicians, counselors, a dietitian, an Occupational Therapist, pastors, in addition to family members and close friends who have helped me research and organize my treatment decisions and who have given me support and encouragement along the way. No one person will have all of your answers -- not even you -- even if you must ultimately make your treatment choices from among a range of alternatives that several people help you to define and understand.
