Support the Stenstroms: Next Steps for Nerves

We are gathering support for Kayla Stenstrom and family as she goes on short term disability for the next eight weeks.

Such funds would be used to:

• Chop away at medical debt – dental insurance is a bit of a joke; did you know each of your teeth are worth at least $10K?

• Support basic family needs while Kayla’s income is substantially dropped

• Prepare for upcoming treatments – physical & mental therapy, medication, more dental devices and procedures

This time of medical leave will be used to:

• Continue treatment for idiopathic dental nerve pain

• Embark on cognitive / acceptance therapy for notable PTSD

• Have an appendectomy and subsequent recovery – for extra funsies

• Rest, write and process

Kayla has been working throughout the last two years, though utilizing FMLA leave to protect her job when she continually runs out of PTO. This is meant to be both an essential time of recovery and an experiment to see if slowing down lowers inflammation and calms nerves. Though her condition is chronic and not likely to be miraculously resolved in the next 8 weeks, her mind will hopefully be equipped to face the future with it.

The back story: [See next section for Notes]

On Labor Day weekend 2021, the Stenstroms were packing to head to the lake and Kayla suddenly felt intense pain in her four front bottom teeth. At first she thought it was gum irritation and tried typical numbing products, but it was hard to pinpoint where the pain was coming from. It kept her up all night and didn’t respond to such treatment.

Kayla visited her local dentist when they got home and the dentist referred her to Core Endodontics for a root canal, despite the tooth being alive and showing no signs of decay. Core did a round of tests on her mouth – a bit baffled, but went forward with the procedure.

This was the pivotal trigger for an onslaught of issues. The first warning sign was that Core was not able to get her mouth numb and Kayla felt the entire root canal. The second warning sign was that her pain didn’t improve after the technique, but got worse. The third warning sign was that Gabapentin (a seizure and nerve medication) helped the pain. Kayla spent many late nights on the phone with Dr. Cook as they tried to figure out what to do.

Dr. Cook re-root canaled the tooth to be sure nothing was missed but the pain persisted and he referred Kayla to the University of Minnesota’s Orofacial and TMJ Pain Clinic.

The U of M diagnosed Kayla with idiopathic persistent dental alveolar pain (IPDAP or PDAP) which is an extremely rare condition (1 in 100,00) in which nerve pain continually presents itself in perfectly healthy teeth. IPDAP means “nerve pain that occurs in a tooth or where a tooth once resided, all day for months to years, in the absence of clinical, radiographic evidence of tooth pathology or a preceding causative event”. In short, “you have a lightning bolt in your teeth all day every day and we don’t know why.”

PDAP is similar to trigeminal neuralgia but different in that it’s not short, sharp bursts of pain along the trigeminal nerve but rather constant, unremitting pain all day, felt in a tooth or several teeth. In addition, the pain is absent when eating (not typical of dental issues) and greatly increased by the position and movement of her tongue.

It is difficult to describe this type of pain, which doctors view as rare and off the typical 1-10 level chart. With this type of pain, the patient is nearly always in a state of fight or flight and developing PTSD is a given.

Medication is the only real treatment so Kayla raised and raised her Gabapentin dose. In November, the pain was so debilitating that she decided to have her tooth pulled. Prairie Oral Surgery Fargo removed it and the pain disappeared. A month went by and just before the 2022 New Year, it returned in the tooth to the left of the one that had been pulled.

From there, it’s a long story of Kayla seeing specialists – dentists, endodontists, neurologist, neurosurgeon, etc. In 2022, Kayla was seen by 15 or so doctors, most of which turned her away without knowing what to do. During this time, she was also having physical therapy and nerve block treatments for chronic migraines. From Sept 2021 to Fall 2022, she was at a doctor apt 1-3 times a week.

She tried multiple bridges, dentures and retainers to replace the missing tooth but her mouth wouldn’t tolerate any of them. In six months, she went from taking 300 mg of Gabapentin to 3,500 mg, nearing the max that a person can take. Kayla got creative with the help of a PA friend and began using low dose naltrexone (which has been a life saver) and medical cannabis as well. And she also started meeting with a pain psychologist.

In June 2022, her mental health plummeted. One night, she thought about how she didn’t want to live anymore. Terrified and grieving, she asked Prairie Oral Surgery to remove another tooth. They refused, knowing that her condition was likely to pass the nerve pain along to the next tooth. Viewing things as her tooth or her life, Kayla went to her sister, Alissa, a dentist in Jamestown, who extracted another tooth.

Kayla had more bridges, partials and retainers to try to fill the space while keeping nerve pain away. (She has driven to Jamestown many many times.) Nothing was sustainable.

In July, a hematologist shared his suspicion that Kayla has spectrum connective tissue disorder, meaning that she has components of connective tissue diseases, like Ehler-Danlos syndrome, which present themselves as joint hypermobility, headaches, GI problems, nerve dysfunction and pain throughout the body.

In 2022, a last structural mouth idea was launched: get an implant. (Up until this time, an implant was highly advised against due to the extreme sensitivity of nerves in the face. But after attempting to wear many devices, there was really nothing left to try.) Kayla had her lower jaw opened up with bone grafting. She recovered for several weeks and got through with a plastic retainer that Alissa had made to keep her tongue away from adjacent teeth. In December, for a separate issue – severe migraines, she had the nerves in her neck burned (radiofrequency ablation). In January 2023, she had an implant placed. Again, she waited months hoping a finish line was in sight.

(Throughout the Spring of 2023, treatment for migraines also continued with medication, physical therapy e/o day, occipital nerve blocks, massages, chiropractic care, etc. In addition, she has been navigating abdominal issues and a stone was found in her appendix.)

In late April, a crown was placed on the implant and it felt great. Kayla had hope that the hell was over. Three days later, nerve pain reappeared in the tooth to the left of the crown AND where the crown was. Basically, she now feels the same pain she felt back in Sept 2021 and June 2022 where the teeth no longer are.

It has been devastating to realize that the surgeries and recovery and the hourly “hanging on” of the last year did not result in a solution. Kayla's pain is currently not responding well enough to medication and there's not a structural way for her to sustainably have front teeth, so her care team isn't sure what to do next. 

She is still doctoring with the University of MN, local doctors and her sister.

Notes:

Asking for monetary support is not a decision that Kevin and Kayla have arrived at lightly. But we feel that enough people have heard her story and responded with a passionate desire to help that this ask will be viewed positively and will make a viable difference in what comes next.

Some may want to donate through other means, such as app transfer or check, to avoid the fees of Go Fund Me; that is fine and welcomed as well. We did consider other routes but this avenue is a helpful way to organize and host, a safe way to give and a transparent way to keep records.

Special thanks:

The following medical professionals have gone above and beyond to provide compassion, outside-business-hour support, discounted assistance and out-of-the-box ideas for Kayla's care. Kayla and Kevin are grateful for their expertise and kindness.

Alissa Hanson, DDS, Downtown Dental, Jamestown, ND

Cody Baxter, PA-C, Moorhead, MN

Jerry Cook, DDS, Core Endodontics, Fargo, ND

Jonathon Sikorski, PhD, LP, Health Partners Park Nicollet, Bloomington, MN

Jeremy Uphoff, RN, Fargo VA Health Care System, ND

Donald Nixdorf, DDS, MS, University of Minnesota Orofacial Pain Clinic, MN

Tessa Rasmussen, Speech-Language Pathologist/Owner, On Spot Therapy, Fargo, ND