Steinbach woman living with rare condition looks for support

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This article was published 27/09/2015 (3104 days ago), so information in it may no longer be current.

Finding support for medical condition in a rural area is not any easy feat. The difficulty is also amplified when the medical condition is rare. But in the case of Patty Penner, a Steinbach woman living with Trigeminal Neuralgia (TN), she won’t give up hope in finding additional support for a condition that has completely changed her life.

Penner was first diagnosed with TN—also called Tic Doloureux or The Suicide Disease—in April 2012 after a painful attack.

Penner—a former educational assistant at Steinbach Regional Secondary School—was at work when her first attack happened.

ADRIANA MINGO | THE CARILLON
Patty Penner poses with her husband and support, Curtis in their Steinbach home.
ADRIANA MINGO | THE CARILLON Patty Penner poses with her husband and support, Curtis in their Steinbach home.

“I was sitting in the staffroom at the SRSS and I had just had my lunch. I was drinking warm water and suddenly I had stabbing pain in my chin. It was so sudden that it made me gasp. I ran to the bathroom and thought ‘there’s got to be blood. I must’ve broken a tooth or something.’”

When Penner got to the bathroom, there was nothing on her face. The pain was gone by then and there was just a small twitch left. She had the same pain several times throughout that day and was off work the next.

Penner said when she came back to work, she thought ‘I can’t do this’ because every time a buzzer would buzz or a student would drop a book or someone would talk, the pain would explode.

Penner saw her doctor soon after and was put on medication.

“The medication is somewhat of a diagnosis,” she said. “Because if it relieves the pain then they’re on the right track.”

She was diagnosed within five days of her first attack.

The University of California, San Francisco describes TN as “a rare neurological disease that causes sudden, severe, brief, stabbing recurrent episodes of facial pain in one or more branches of the trigeminal nerve. It is usually caused when the trigeminal nerve is being compressed by an artery or a vein, but can also be present with no apparent cause.”

For Penner, this condition has drastically changed her lifestyle.

“It’s so draining because you’re constantly in pain and how it limits your lifestyle,” said Penner.

Penner can’t work at the job she loves, go to any of her husband’s gigs, or be in loud crowds. She also can’t stand outside when it’s windy.

All these things trigger her pain.

“The pain isn’t just from noise—it’s from vibration and sensation,” said Penner. “Putting out your makeup, brushing your teeth, having a shower—all those things can cause pain.”

In 2013, Penner had microvascular decompression surgery, which wasn’t successful.

Penner said during the surgery, doctors pad the fifth nerve (trigeminal nerve) where any arteries are vessels are touching or wrapped around the nerve with little Teflon pads.

Not only was the surgery unsuccessful for Penner, but she also experienced a major complication.

When operating, doctors stretched the eighth nerve, which controls balance and hearing.

She now has major vestibular (balance) issues. She can’t drive because she doesn’t have the ability to move her head. She can’t go grocery shopping either because it’s too overstimulating. She can’t hold her grandkids on her own and for a while after her surgery—she couldn’t even walk up the stairs in her own home.

Though there are several different options for surgery, Penner said she would never have surgery again for TN, because the risks outweigh the reward.

Another condition Penner developed as a result of the medication she was taking was SIADH—or Syndrome of Inappropriate Antidiuretic Hormone Secretion. She said this causes her sodium levels to be out of whack because her body retains fluids, which dilutes the sodium.

Since her diagnosis, Penner has had a good network of support from her family and friends. Her husband of 34 years, Curtis helps her with many household tasks and her appointments. Her three children come to support groups and her elderly father drives her around when needed. Her friends let her hold their hands when walking because of her vestibular issues.

But Penner said she’s looking for something more—to be part of a support network for people actually living with TN.

She said she was previously part of a support group in Winnipeg with four other people who either were in remission from TN or had successful surgeries. She described them as “snowbirds” which eventually lead to the group’s disbandment.

Penner is also part of an online network of support called “Living with TN.” She said she’s talked to people across Canada living with the condition and has become quite close with a woman from Edmonton.

However, she’d like to have face-to-face interaction and to meet people within her area who are experiencing what she experiences daily—a support that she can only get from people who are living with TN.

“My goal in all of this is not to create a woe-is-me pity story,” said Penner. “I want to create awareness. If people, doctors, and the community are aware of this condition maybe it could lead to more research and then possibly a cure.”

This proves to be a difficult task for Penner because this is a rare condition, which most people haven’t heard of let alone have.

Dr. Anthony Kaufmann, neurosurgeon at the Health Sciences Centre and medical advisor for the Trigeminal Neuralgia Association of Canada, said it’s hard to say how many people in Manitoba are diagnosed with TN each year because there are two types of pain.

The first, Atypical TN, sees about 10 to 20 per 100,000 people diagnosed each year.

The second, Typical TN, which requires surgery and medication sees about four per 100,000 people diagnosed per year.

Dr. Kaufmann said he performs about 20 TN-related operations at HSC per year. He adds patients travel from across Canada to have these surgeries because HSC has been recognized as having specialized experienced treating the condition.

International Trigeminal Neuralgia Awareness Day is Oct. 7. The cause’s official colour is teal and in support of the awareness day, buildings all over the world light up teal. Notable buildings that support the cause include the CN Tower in Toronto, Willis Tower in Chicago, and Trafalgar Square in London.

Penner hopes somewhere in Steinbach and area will light up a building with the colour teal for TN day.

If you’re living with TN in Manitoba, Penner would love to hear from you.

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