Gina Lindeland’s Battle with Trigeminal Neuralgia

When Gina Lindeland went down to her mom’s apartment in early February 2013 crying, screaming in pain and holding her jaw and ear, neither woman had any idea what was wrong with Gina nor had they ever heard of Trigeminal Neuralgia. TN, sometimes called the suicide disease, is a rare disease that produces an electric shock like pain in the jaw to ear area of the face. Gina had absolutely no warning signs before that first episode; there was no reason why it happened – it was simply luck of the draw.

A trip to Olmsted ER first brought a diagnosis of possible TMJ (temporomandibular joint dysfunction), but the second trip, the ER doctor immediately diagnosed the episode as TN based on how Gina held her ear with her thumb and cupped two fingers around her jaw to hold it.

Gina was sent to Mayo for treatment; when she had an episode, she would need to go to the ER for IVs and meds to deal with her pain. Tegretol and Gabapentin were the two drugs Gina took for the pain. A side effect of Tegretol was that it ate away her teeth. She was also prescribed Cymbalta, Abilify and Wellbutrin for depression. The nerve medications put her in a brain fog and made her sleepy.

Gina had been a fun, outgoing free spirit who loved people before the episodes began; she had always worked in service industries and health care and enjoyed it. She began to lose her personality and no longer went out much as she sheltered herself in an attempt to avoid another TN episode. Little things like smiling, talking, cold, heat, the wind or vibrations from a nearby train could trigger an episode in which pain would go from zero to 10 in just moments.

Gina’s husband Jeff was always on alert, knowing that at any time she might need a trip to the ER. Jeff always believed Gina and knew she wasn’t exaggerating her pain. She became a recognized regular patient at the ER; some of the nurses would remember other people having similar symptoms without finding out the cause.

After dealing with TN with IVs and medication for 3½ years, Gina decided to seek other answers. She visited a neurosurgeon at Gundersen Health in La Crosse, Wis. On October 1, 2016, Gina became the 12th Trigeminal Neuralgia surgery patient for the neurosurgeon.

The cause of Trigeminal Neuralgia is a nerve touching the artery that leads to the brain stem. In the surgery, a piece of the skull the size of 50 cent piece needed to be removed from the lower back of her head, her brain was tipped up with the brain fluid draining to one location. The nerve was then wrapped in teflon fiber mesh to protect the nerve from contact with the artery.

Before the surgery, each heartbeat caused excruciating pain. Gina’s sister, MariLyn Bakke compared watching Gina in an episode to watching someone in labor. The intense pain would rise and ebb in intervals.

Gina shared that it felt like someone had a vice grip tightening on her entire jaw so that all her teeth felt like they were abcessed and then electrical shocks would come and intensify the pain.
After the first surgery, it took over a year to completely heal. Nausea, dizziness and confusion had to be dealt with as the fluid in the brain adjusted. In May 2018, Trigeminal Neuralgia hit Gina again. She became the first person to need a second surgery for her neurosurgeon.

Gina had a vein that had fallen onto a part of the nerve that had not been wrapped with the teflon fiber mesh in her first surgery. Her neurosurgeon removed a portion of the vein and cauterized it in the second operation.

In recovery, Gina had to lay flat on her back the first 24 hours and then was raised a 10% grade hourly after that. She spent one night in the ICU, one night in a regular room and then was sent home. She credits her husband Jeff and her mother-in-law for their care for her during her recovery. She needed to keep one eye closed for over two weeks because of her extreme dizziness as she recovered. Gina will forever have an indent at the back of her head where her skull was removed. Five years after the second surgery, Gina said she’s still healing. She shared that after her surgery, she just let the wind blow on her face, enjoying that simple freedom and calling it a blessing.

Gina no longer has the pain of Trigeminal Neuralgia, but following her surgeries she now deals with depression, confusion, lack of concentration and lack of organizational skills. Being in public is hard now for Gina. Trigeminal Neuralgia has cost Gina her job; she has recently been approved for full disability.

Gina’s mom, LuAnn Rindels, shared a call from Gina at a low point of her depression. In tears Gina had cried, “I am so broken and I can’t be fixed! It would be so easy to just drive off the road.”
MariLyn, Gina’s sister, recalled when she got a phone call about how depressed Gina was; she remembered Trigeminal Neuralgia is called the suicide disease. “This hit me the hardest – what can we do to protect her?’ wondered MariLyn.

Gina commented, “I always thought it (suicide) would be because of the pain, but it was really the loss of who I was.” Medication for depression, like Cymbalta, often has a side effect of suicidal tendencies: Gina is well aware of this. She reached out to her neurosurgeon when she became depressed. She felt he needed to know there are after effects – the surgery is not the end of the issues for patients.

Gina is now working with several counselors including one on the internet. She has never met anyone else with Trigeminal Neuralgia in person, but she has joined support groups on the internet. She has learned that some people have had as many as four surgeries with Trigeminal Neuralgia affecting both sides of their faces. Gina has only had it affect her right side.

Her mom commented, “Dealing with the mental part of it is a whole different scenario!”

Gina learned that in some areas of the country, surgery to treat Trigeminal Neuralgia is not acknowledged. It has been only in the last 15-20 years that people have become aware of TN. Medicare is just now starting to acknowledge it as a disease.

Gina has decided, “Life is not over!” While she’s considered trying to go back to work full time, she realized going back to work is not an option at this time. She feels her purpose is “to help people who are going through this alone.” Gina credits her own wonderful support system for helping her through all of her challenges.

Her goal now is to spread awareness of the disorder so that people who have TN don’t have to deal with the debilitating disease on their own. The best way to help Gina is to learn about the disease so you can help others. Gina hopes to take her experiences with TN and use them to help others.