Hudson mother comes back from debilitating pain
Like most people, Emily Janisch had never heard of trigeminal neuralgia when it struck her life with a vengeance last fall.
The active mother of mother of four children under the age of 10 said the nerve illness came on suddenly in September 2015. She did not know what was causing the extreme pain on the left side of her face and only on the left side.
“It was horrible pain. It felt like my jaw had been crushed, like there was a blow torch aimed at my face and something sharp poking me in the eye, all happening at once.”
She went to her doctor in Hudson who suspected it was trigeminal neuralgia and referred her to a neurologist in the Twin Cities who confirmed the diagnosis. TN affects the trigeminal nerve which has three branches that conduct sensations from the upper, middle and lower portions of the face, as well as to the mouth.
Her condition was initially treated with medication, beginning with a drug used to treat epilepsy. But as the pain continued, Janisch was put on a high dose of Dilaudid, a strong narcotic opioid painkiller prescribed for the relief of moderate to severe pain.
The drug eased the pain but left Janisch in an altered state, both physically and mentally. She was unable to continue her job at Inspiring Actions Yoga Studio and Wellness Center where she was the marketing director, and needed help to care for her children. Friends, neighbors and co-workers stepped up to assist but she was concerned about the long term implications taking the powerful drug would have on her life and her family.
Janisch said the medication worked to stave off the pain for about two months but one night she felt it return. “It could be triggered by the smallest thing -- brushing my teeth, applying makeup, even a cool breeze. I needed to find something more to treat this.”
Her research led to information about some other medications to treat the symptoms and she found some non-medical procedures that were out there. But she was drawn to something called microvascular decompression, a brain surgery that had proven effective against the pain.
Janisch said she was willing to “fly anywhere” to get the surgery but it turned out that Dr. Andrew Grande, a neurosurgeon who is known nationally for his treatment of TN, was close by at the University of Minnesota. She had the surgery on Nov. 20.
The trigeminal nerve is extremely small and surgery, a craniectomy just behind her left ear, involved removing pressure on the nerve and the placement of a titanium plate to protect it.
Janisch said the surgery was a success and she is pain-free for the most part. She does have some residual effects and is a patient at the Facial Pain Clinic at the University of Minnesota where she sees a neuropsychologist and physical therapist who assist in her recovery from the TN nerve pain.
Janish said she and her husband Jeff have been overwhelmed by the support they have received from the community since her illness. They have lived in Hudson for 16 years and received countless Facebook, emails and text messages of encouragement. Neighbors stepped up to form a “meal train,” her sister-in-law started a Go Fund Me page and Tracey Mortensen, owner of Inspiring Actions, held a yoga fundraiser for the family that raised more than $1,000 to help the family with expenses.
Janisch said as tough as her experience has been, she said she has learned to live everyday with “love, grace and gratitude.”
“I want my children to learn from this experience, that the most difficult times are what give us strength.”
Donations are still being accepted for the family at Inspiring Actions by calling (715) 381-3148. For more information about trigeminal neuralgia go to the Facial Pain Association web site at fpa-support.org or contact Dr. Grande at www.mhealth.org/providers/grandeandrew-1113895533.
Trigeminal neuralgia: Trigeminal neuralgia (TN) is considered to be one of the most painful afflictions known to medical practice. TN is a disorder of the fifth cranial (trigeminal) nerve. The typical or “classic” form of the disorder (called TN1) causes extreme, sporadic, sudden burning or shock-like facial pain in the areas of the face where the branches of the nerve are distributed -- lips, eyes, nose, scalp, forehead, upper jaw, and lower jaw. The pain episodes last from a few seconds to as long as two minutes. These attacks can occur in quick succession, in volleys lasting as long as two hours. The “atypical” form of the disorder (called TN2), is characterized by constant aching, burning, stabbing pain of somewhat lower intensity than TN1. Both forms of pain may occur in the same person, sometimes at the same time.
--From the Facial Pain Association website at fpa-support.org.