November 22, 2024 - By Kathryn Sill

During the winter of 2018, Caryn Dahm noticed a strange ache in her tongue when chewing.

Her dentist referred her to an oral surgeon in hopes an x-ray would reveal the cause, but when the x-ray came back clear she was prescribed a topical steroid that provided no pain relief.

The pain was only the beginning of what would mark a five-year journey searching for a solution, until she came to Stanford Neurosurgery.

Dahm calls Bettendorf, Iowa home, a town located on the Mississippi River. With a love for travel, she lived overseas in Europe for five years with her husband, Jeff, before settling in Iowa and raising their two children.

My hope is that my story can help other patients who are experiencing similar symptoms shorten their journey by coming to Stanford first.

In Bettendorf, Dahm began to build her life, forming friendships, working part-time in the local school district, attending her children’s school activities, volunteering at church, and joining multiple clubs.

But, as Dahm’s pain increased and began to spread from the right side of her tongue down to the back part of her lower jaw, the life she once lived came to a halt.

“The pain felt like bullets with sandpaper shooting up the sides of my face,” Dahm said. “The pain became so severe that movements like chewing, talking, or even brushing my teeth were impossible.”

She had 11 MRI scans, but no doctors could identify the cause of the pain. Multiple doctors prescribed a lengthy list of medications that provided what she refers to as “take the edge off” relief, but never provided complete relief.

“At home I began to walk into walls as the pain started to affect my vision,” Dahm said. “I was on so many medications that I couldn’t think clearly, I couldn’t cook, I couldn’t drive, I would fall asleep at the dinner table, and I would cancel travel plans, because the pain was too severe.”

I was on so many medications that I couldn’t think clearly, I couldn’t cook, I couldn’t drive, I would fall asleep at the dinner table, and I would cancel travel plans, because the pain was too severe.

Dahm’s husband’s career caused him to travel often, but even with his work travels Caryn said he was her biggest champion.

“Jeff would spend hours researching my symptoms and reading medical journals to learn about how to help,” Caryn said. “Most of his reading was Chinese journals, as China has a larger population to draw case studies from.”

Dahm and her husband traveled the country to different doctors to no avail. While Dahm’s husband traveled, her friends began taking turns spending the days with her. Within her friend circle was a group of other mothers whose children attended school with her children, one of which is Carrie Lee.

“If it were not for Caryn, our group of mom friends wouldn’t know each other,” Lee said. “Caryn is the glue that has brought all of us friends together. People gravitate towards her extroverted personality, and she instantly makes you feel like you can be yourself.”

As Dahm’s ability to drive and speak on the phone became difficult, Lee and the other mothers helped organize meals, and would schedule doctor appointments and call her insurance.

Lee would go over to Dahm’s home to check on her and her children. As Lee watched Dahm’s decline she described it as “watching my perfectly high-functioning, healthy friend drink poison.”

The two would spend hours researching specialists and cold calling asking for long-term solutions beyond more medication.

Then, in 2019 after transferring from one specialist to the next, Dahm was diagnosed with glossopharyngeal neuralgia, a rare condition that affects the glossopharyngeal also known as the ninth cranial nerve. This nerve is responsible for sensory, motor, swallowing, taste, and parasympathetic function, but the effects of the condition can cause stabbing pain to the throat, tongue, ear or tonsils, though it varies for each patient.

The proposed solution was surgery. That December, Dahm underwent a craniotomy, where a portion of the skull was removed to access the brain at a hospital outside of Stanford. The surgeon performed a microvascular decompression (MVD), which is a surgical procedure that removes the blood vessel away from the compressed nerve to lessen the pressure on the nerve. During the MVD they severed her ninth cranial nerve, one-three sensory branches of the tenth nerve, and padded the tenth nerve.

Following the MVD, Dahm still experienced pain and weekly flare ups. It wasn’t until 11 months postoperative she was able to come off her medication. Suddenly, months later the pain came back. The medical facility she received treatment at had no suggestions for help. Dahm’s neurologist writing in her notes, “I don’t know, I’m stumped.” Frustrated the pain was returning, Dahm remembered a neurosurgeon Lee had found, but she had not seen, Michael Lim, MD, chair and professor of Neurosurgery at the Stanford University School of Medicine.

She scheduled a call with Stanford and was immediately met by a vast difference when she spoke with one of the nurses on the care team, Kelli Jew, NP.

“Kelli really cared, really listened, and assured me this was something they could address,” Dahm said. “I was so used to having to convince doctors something was wrong with me, that I was in shock. For years, we would call hospitals who would have no solution, pass me off to another specialist, or refuse to do my surgery for fear it would lower their success rate if my pain returned. At Stanford, I could clearly see the focus was on caring for the patient first.”

Dahm was used to waiting months just to get an appointment, but her surgery at Stanford was scheduled within 11 days.

Within viewing an MRI for 30 seconds, Lim identified what was causing Dahm’s pain, and explained in step-by-step detail that he would perform another MVD. Dahm’s first MVD addressed her ninth and tenth cranial nerve, but the MRI showed her fifth cranial nerve also needed attention. The fifth cranial nerve is the trigeminal nerve, the largest of the cranial nerves, that provides facial sensory.

“Dr. Lim provided confidence and assurance going into my surgery that placed my fears at ease,” Dahm said. “I have never met a doctor so amazingly humble, kind, and generous. Dr. Lim met with us a few days before the surgery. He was also very attentive to my husband. Instead of calling my husband, or sending an intern, Lim personally searched for my husband and found him in the cafeteria to share I was able to see visitors. In post-op, Dr. Lim repeatedly said it was an honor to operate on me. His care was unmatched.”

Following surgery Dahm’s pain vanished, and her medications were no longer needed.

Suddenly parts of her life she had put away for years returned. One of the first major milestones was driving alone over multiple states for the first time again. She drove from Iowa to Colorado to watch her son be commissioned as he graduated from the United States Air Force Academy. Then, her friend group traveled to Chicago, naming themselves the “Mother of the Bride Group”, as they celebrated her daughter’s upcoming wedding, that she would now attend completely pain free.

“Dr. Lim and the entire Stanford team have given me back my life and that is invaluable,” Dahm said. “I can drive, I can travel, and most importantly I can enjoy life with those I love. My hope is that my story can help other patients who are experiencing similar symptoms shorten their journey by coming to Stanford first. I’m forever grateful to Dr. Lim and the entire Stanford team.”