Help Kaytlin

Hello, my name is Kassidi and I have started a Go Fund Me account to help my sister, Kaytlin, pay medical expenses as doctors search for what is causing vertebrae in her spine to spontaneously break. Before I get into all the details let me tell you a little about her.

Kaytlin has always wanted to be a nurse. She was taking classes and working as a nurse’s aide when she married in 2020. She and her husband quickly started a family with the birth of a lovely baby girl. The following year, she and her husband added another beautiful baby girl to their growing family. Kaytlin was living a dream with two precious daughters and a devoted husband, while she pursued a nursing career. The following year, her life suddenly changed. On January 19, 2022, a vertebra cracked in her neck. While the fracture was painful, Kaytlin thought it was just a scary, weird, event, one of life’s curveballs, something which she could fight through, as she had with other life challenges. She knew with hard work and determination; her life would return to normal. Little did she know that this was only the beginning of what would turn out to be an unimaginable nightmare.

Over the next 18 months, at least two more vertebrae spontaneously broke. One break required surgery to remove pieces of vertebrae that were painfully free floating under her skin. She lost feeling in her left arm when her shoulder blade became detached from the muscle. She was in and out of the hospital more times than most people would be in a lifetime.

Kaytlin never had a warning when a vertebra was going to fracture. The first time, she had just driven into a parking lot when she heard what was to become a familiar popping sound followed by immense pain. Another time, she was plugging in the vacuum cleaner, when “pop,” more excruciating pain. With each break, she ended up in the hospital in pain, praying for an answer to her suddenly serious health problem.

Kaytlin was shuffled from one doctor to another. After running numerous tests, doctors finally told her they had no idea what was causing the breaks, and the only treatment has been pain medication. As if Kaytlin’s medical problems were not enough, she became a single mother in April of 2023.

Still, she is a fighter. She has seen numerous medical specialists in north Texas, endured dozens of scans, MRI’s, x-rays, and blood work. Yet, the specialists remain clueless. The doctors mostly said her medical problems were beyond their scope and she needed to go to the Mayo Clinic. She applied to the Mayo Clinic in September 2022 and the clinic denied her application. She still didn’t give up. Finally, in May Kaytlin received good news. The Mayo Clinic would take her case. Since getting the good news, she has been in the hospital for another week with an unresponsive numb left leg and arm. X-rays showed she had 3 new fractures at T1, C7, and C5. The fracture at C5 entrapped the left side of a main artery causing her left sided functions to stop working.

I am asking for any help that you can provide. Right now, the Mayo Clinic remains Kaytlin’s most promising option. She is unexpectedly now a single mother of two children and would like to care for them the best she can and get back to a normal life. We appreciate any and all donations to this cause to help her pay for her care at Mayo Clinic and the enormous amount of medical debt she has accrued.

*Now that you have read this far, here are details of Kaytlin’s medical journey:

On January 19, 2022, Kaytlin spontaneously broke a vertebra in her neck (T-1 spinous process) while driving in the parking lot at her local grocery store. She had stopped to look left at a stop sign when she felt a cracking sound in her neck, causing her extremities (arms and legs) to become temporarily paralyzed. She called her mother-in-law who drove her to the ER at her local hospital. After some testing, a Neurosurgeon on call discharged her, stating what happened was an anomaly that would heal itself. He told Kaytlin to follow up with her primary care doctor, who ordered more tests. When the test results were inconclusive, the doctor told her to resume normal activity, that the fractured vertebrae would heal itself, and she should not worry about it happening again.

Over the next four months Kaytlin’s pain and numbness in the left arm continued to increase. During this time Kaytlin had multiple appointments with her primary care doctor concerning the increasing pain and numbness. Kaytlin’s doctor dismissed her concerns about the pain and numbness. He told her that her body needed time to heal and prescribed more pain medication.

On April 13, 2022, Kaytlin fractured her C-7 while plugging in a vacuum cleaner at her home. Once more she went to an ER where scans revealed that she had fractured another vertebra, the C-7, and the previous T-1 fracture had not healed and was now displaced. After admission to the hospital, she spent several days of having multiple tests performed as well as several consultations with a Neurosurgeon. On April 15, 2022, Kaytlin went home after being told that she needed surgery to remove broken fragments from her vertebrae (C-7 and T-1), which were causing her a lot of pain. She was told the surgery would stop the pain, keep further fractures from occurring, and allow her to get back to a normal life after a short recovery.

On April 20, 2022, Kaytlin had the surgery. The neurosurgeon removed the bone fragments the (C-7 and T-1 spinous process) from her neck. Kaytlin was released the same day and told to rest, avoid lifting anything, avoid reaching for anything over her head, and avoid driving. She had a follow up appointment three weeks after the surgery at the neurosurgeon’s office, where a neurosurgery resident removed the staples from her neck and told Kaytlin she was free to resume normal activities. Kaytlin was released back to her primary care doctor for any other care.

Over the next four months Kaytlin’s condition worsened. As if breaking vertebrae weren’t enough, her left shoulder blade would pop out or become disjointed, a condition called scapular dyskinesis. This caused her left arm to become weak and numb. Kaytlin also started having severe pain in her neck and spasms in her trapezius muscle and to add more problems she began having debilitating migraines. During this time Kaytlin would see her primary care doctor, who prescribed more pain medication and told her there was nothing else he could do. She just needed to give her body more time to heal. He also referred her to Physical Medicine and Rehabilitation.

At an appointment with Rehabilitation, a doctor referred Kaytlin to an Orthopedic Surgeon. Although the rehabilitation doctor placed the order as stat (emergency), it took her a month to get it scheduled. During the Orthopedic Surgeon’s appointment Kaytlin expressed that she needed help getting referrals to someone who could figure out a diagnosis and hopefully a treatment. Kaytlin also expressed her concerns that she was afraid something else was going to happen. The doctor ordered a new MRI of her neck and stated that he would reach out to a colleague, an Orthopedic Spine Specialist. Kaytlin had the MRI a week later and the results showed several degenerative disks, tears between several vertebrae, and remanence of the previously broken vertebrae.

After the MRI, Kaytlin had an appointment with an Orthopedic Spine Specialist. At the appointment he stated that he had looked at the scans and stated there was nothing he could do for her. The doctor told Kaytlin that she would not spontaneously break anymore vertebrae. At the end of the appointment the Orthopedic Spin Specialist grabbed her hand, asked if he could pray for her and wished her good luck.

By this time, it is the middle of August 2022. Kaytlin is in severe pain. She is unable to be the wife and mother that she wants to be, and she feels as if she is getting no help from her healthcare system. Kaytlin decides it is time to find a new primary care doctor and after researching doctors in her area, Kaytlin schedules an appointment with her new doctor on August 24, 2022. During this appointment Kaytlin requested that he refer her to Rheumatology, and a different Spine Specialist in Dallas. The doctor agreed and ordered several blood tests and changed some of her medication. Kaytlin told her new doctor that she felt another event was imminent and hopefully the referral did not take long. The doctor stated that all the referrals were emergencies, and they would happen quickly.

On August 25, 2022, Kaytlin went to get out of a vehicle and felt another sharp pain in her neck leaving her temporarily paralyzed once again. Kaytlin went to a local free-standing ER and was transferred back to the local hospital and admitted. Kaytlin had several blood tests done, a CT and an MRI. The radiology report showed that she had a new fracture on C-5 vertebrae (C-5 bilateral lamina fracture). During her stay Kaytlin met with Neurosurgery, Neurology, and Internal Medicine. The Neurosurgeon told Kaytlin that she needed to wear a neck brace for the next 90 days, to only do light activity, lift nothing over 10 pounds and avoid lifting her arms above her head. The Neurosurgeon said the fractures would heal themselves and no follow care was planned. Kaytlin was discharged from the hospital on August 29 and told to follow up with her new primary care doctor.

Over the next 90 days Kaytlin wore a neck brace and was heavily medicated to deal with the pain. She was unable to hold or play with her one- and two-year-old daughters. She continued appointments with her new primary care doctor, and they would discuss specialist for her to see. He would do a referral to a specialist, and the specialist would deny it. When a specialist approved a referral, it would take Kaytlin months to get an appointment, despite the seriousness of her situation. Often when she got to the appointment, they had no idea why she was there or what was wrong with her. During this time Kaytlin’s frustration, sense of hopelessness and depression began to worsen. Still, Kaytlin was grateful for a doctor who was finally doing something.

On November 15, 2022, Kaytlin’s dad reached out to the CEO that was over all the hospitals and clinics with a plea for help. The CEO responded the next day, November 16, 2022, and copied the health organizations President with instructions for her to investigate Kaytlin’s case. Following the directive of the CEO, the President had their organizations Head of Patient Relations contact Kaytlin, and a call was setup for the following week with the Head of Patient Relations, the regional Chief Medical Officer, Kaytlin, and her father. During this call, Kaytlin discussed her health problems and what had happened to diagnose what was causing her deteriorating spinal condition. The regional Chief Medical Officer committed to assembling their best resources to figure Kaytlin’s health issues and promised to do it promptly.

As promised, the health facility performed more tests and a team of doctors to access them, including regional heads of Neurosurgery, Neurology, Orthopedic Spine, Endocrinology, Rheumatology and Kaytlin’s Primary Care Doctor. After having turned down Kaytlin’s referrals earlier, this time the Head of Neurosurgery saw her on November 28, 2022. During this appointment Kaytlin and the doctor went over the scans done a few days prior. The doctor stated that her C-5 vertebrae was very bright and there was a lot of swelling throughout her cervical spine.

On December 1, 2022, the “dream team” met to discuss Kaytlin’s case. After much discussion none had a clue as to why these things were happening and had no idea what to do next. Having no idea what was happening, the Head of Neurosurgery released Kaytlin from his care and told her to resume normal activities. While many promises were made to help Kaytlin get a diagnosis either within their vast portfolio of hospitals and doctors or by referring her to an organization that was better equipped to produce the answers to her ailment, Kaytlin still had no answers. She ended up with a mountain of medical debt and no better off physically than when she started.

Although Kaytlin was disappointed that the “dream team” had failed her, she was determined to continue looking for an answer and to live the best life she could.

Regardless of the pain she was in, she took care of her husband and daughters the best she could. To ease the financial burden, on January 16, 2023, Kaytlin took a job in healthcare. Over the next couple of months, she had some additional tests run, but her health was good enough for her to balance family duties and work full time. But it didn’t last.

On February 26, 2023, Kaytlin was sitting on the floor playing with her oldest daughter, a vibrant, spirited 3-year-old, who went running to her mother. In doing so, she collided with her mother’s left shoulder, causing Kaytlin immediate and severe pain that radiated up her neck. Kaytlin tried icing, taking ibuprofen, muscle relaxers, etc., nothing would ease the pain.

On March 2, 2023, Kaytlin went to see her primary care doctor, who prescribed her some medication and told her to call back in a few weeks if things were not better and he would order a new MRI. Things did not improve and March 14, 2023, Kaytlin had outpatient MRI which revealed a now displaced C-5 bilateral lamina fracture and several fractures throughout the C-5 vertebral body; it also showed a lesion on C-4 vertebra, and pieces of bone falling from C-7 vertebra. Over the next few weeks Kaytlin continued to work full time and take care of her family even as the pain continued to increase. On April 3, 2023, Kaytlin spoke to her Primary Care Doctor, who told her she needed to stop working.

On April 4, 2023, when the pain became unbearable, the hospital admitted Kaytlin again. For the next several days the staff tried to get Kaytlin’s pain under control. While in the hospital Kaytlin and her dad requested that a Neurosurgeon do a patient consultation to discuss the results of the March 14, 2023, MRI. Neurosurgery sent a physician assistant to review the result. When the assistant showed up, he stated that he had looked over her scans extensively and did not find anything new, nor could he identify the source of her pain. Kaytlin asked if he had read the radiology report. He stated that he had read it. Kaytlin then asked if he read the parts about her C-4,5 and 7, before he could answer Kaytlin continued and told him what the report said. He fumbled around and refocused on the scan and said yes, he sees what the radiologist was referring to. However, he dismissed any of this being the cause of Kaytlin’s pain. Kaytlin then asked him to pull up the scan from November 25, 2022, to see if any of this was present on that scan. The assistant looked and stated that these were present, and the assistant told Kaytlin that “we must have missed that.” Soon afterwards the assistant said he had to leave and wished her the best. On April 7, 2023, the doctor sent Kaytlin home without any medical discharge instructions or directives to follow up with anyone.

The month of April was full of downs, then good news and then more downs. A few days later, on April 14, 2023, Kaytlin had her first consultation with the Mayo Clinic and for the first time in a long time she had hope that she would get better. She continued to talk with the Mayo Clinic and pray that she get would well.

On May 16, 2023, Kaytlin and her daughters moved in with her sister until the house she rented was ready for her to move into in the middle of June 2023. Although this was a sad time, Kaytlin did get news from the Mayo Clinic that they were accepting her case and scheduling would be reaching out with details. Physically, emotionally, and mentally exhausted Kaytlin determined to fight as hard as she could, fight for her kids and fight to get better.

On June 2nd, 2023, Kaytlin had been in severe pain for days. When she turned on a faucet to take a shower, she felt a pop in her neck. Instantly her entire left leg and foot went numb, so she was unable to walk. Kaytlin hobbled to the couch, called her sister, and asked her to come home to take her to the hospital. Kaytlin called her dad to inform him of what had happened, and he suggested she go to a different hospital which would be better equipped to take care of her. While in the hospital Kaytlin had several in-depth scans done; scans she had been requesting the other hospital to do for a year. Even there, none of the medical staff knew what was causing her left leg to be numb, nor why she could not move it. Shortly before her discharge Kaytlin received a call from Neurosurgery to inform her that she had new fractures on several vertebrae.

On June 8, 2023, after days of physical therapy, the hospital sent Kaytlin to a different hospital for inpatient rehabilitation. After five days of intense rehab therapy, she learned to walk again with her left leg and foot. With the help of her dad and stepmom, she moved into her rent house in mid-June. With her stepmother’s help, she enjoys frequent visits from her daughters as she waits to go to the Mayo Clinic sometime toward the end of July.

On June 21st, 2023, Kaytlin had a CT Myelogram ordered by her spine surgeon in Dallas. The procedure involves injecting dye into the spinal canal and tilting the table forward until the dye is seen on x-ray image in her cervical spine. After that several different images are taken by CT scan and followed by 24 hours of strict bed rest.

On June 23rd, 2023, Kaytlin received a call from her spine surgeon in Dallas with the results of her CT Myelogram. The good news is that her new C7 and T1 fractures were stable with no spinal cord impingement, the bad news is that her C5 lamina fracture is severely displaced and she also broke the back of C5. When she broke the back left pedicle of C5 it entrapped the main artery in her neck, stopping blood flow to her entire left side. This explains the earlier event which caused her week-long hospital stay at UT Southwestern. The artery still is partially trapped and does not have good blood flow causing extreme left arm/leg weakness and numbness. Orders from her surgeon are to get to Mayo Clinic as soon as possible and not delay their care.

At the end of June, Kaytlin was contacted by Mayo Clinic to schedule appointments. On July 31st she will arrive at Mayo Clinic in Rochester, Minnesota and have several appointments throughout the week. These appointments will include several different scans, extensive workups from Endocrinology, Rheumatology, Orthopedic Spine, and the bone biopsy team. She will undergo a special bone biopsy in the core of her cervical vertebrae which has never been performed at Mayo Clinic before. All of these tests will take weeks for a result and then a plan of care will be decided.

July 31st 2023,

MAYO CLINIC UPDATE:

I made the trip to Minnesota a couple of weeks ago and was finally seen at the Mayo Clinic. I had a bone biopsy of the core of my T1 vertebrae that was sent to the lab for extensive testing that will take 30+ days to receive results. I then saw Endocrinology and a Spine specialist. They have made appointments for me at the end of September to go back and see the Orthopedic, Neurology, and Spine teams. I have several different scans and small procedures, plus the results of my biopsy that will hopefully bring them to a diagnosis. Until then I am required to wear a neck brace at all times due to new findings on my images that showed extreme instability in my cervical fractures. They're very confident that they can figure this out and begin treatment at my next round of appointments.

MAYO CLINIC UPDATE:

September 21st

As I’m trying to type this I am in shock and still questioning “why me?”. I made the trip to Mayo Clinic again yesterday and did not receive good news. My C5 fracture is completely unstable, free floating, and needs surgery. I need screws and fusions from C2-C7. That’s if they decide that the bones will be strong enough to hold screws and not break. I have severe foraminal stenosis and disc bulges at several levels. My muscle and nerve conduction study revealed that my long thoracic nerve, left rhomboid major, and the serratus anterior muscles are no longer active and the damage is irreversible. My left sided weekness/numbness is permanent. I’ve already been in a cervical collar for over a month and have to continue to wear it until further notice. They will not proceed with surgery until a diagnosis is found so I will have to make another trip to Mayo Clinic soon. I’m devastated. It’s been almost 2 years since my first fracture and I am still at square 1. Please pray for me as I am not doing well mentally at this time.

10/19/23:

On the above date I had an anterior cervical fusion of C4,C5, and C6 done in Dallas at the Carrell Clinic. My C5 had entrapped 2 nerves and was restricting blood flow to an artery while also collapsing, so a fusion was by best shot at gaining some sort of stability. I’m on strict post op restrictions until 1/19/24 that include wearing a neck brace at all times, no bending lifting or twisting my neck, and no driving. Unfortunately that has meant I am only able to see my daughters on the weekends because I have to have help at all times. I am very optimistic this fusion will work and I will finally be able to gain my independence back. It won’t be the end of the road as I am still searching for a diagnosis and will have to participate in physical therapy for several weeks, but this is a great start.