Help Casey Get Life Changing Neurosurgery
Casey has been accepted as a patient by one of the only neurosurgeons world-wide who specializes in Craniocervical Fusion surgery with patients who have Ehlers-Danlos Syndrome. We are raising money to help cover costs associated with her surgical procedures and to provide her and her family with as much love and help as possible. Please join us! Your support will make a huge difference!
About Casey
Let me tell you a little about my sister Casey, and then more specifically about the life changing surgery she needs.
Casey is a daughter, a mother, a wife, a cousin, a niece and a friend. Casey is someone who has worked hard at everything she’s ever touched in order to become a master at it. In our family we remember her rewriting handwritten pages as a child just because there was a single mistake - a beautiful perfectionist - who channeled that energy into following her dreams to become a psychologist. Never shying away from hard work, she worked her way through college. Early on she worked catering weddings. It was while working there that she had some issues with pain in her wrists. At that time no one thought anything of it, except maybe carrying all those serving dishes was the culprit of her issue and so she just kept on keeping on. Despite her pain, Casey successfully earned her PhD, eventually becoming a licensed psychologist and nationally certified school psychologist.
Casey helped students with disabilities and their families, and provided mental health services for children in schools and juvenile corrections. She went on to teach psychologists-in-training before becoming too disabled to continue working. Casey has severely debilitating medical conditions (discussed in detail below) that have not only taken away her ability to work, but her ability to drive, to share in simple activities with her family like dinner at the kitchen table or a board game with loud noises, and most of the day to day activities healthy people often take for granted. The past several years have been grueling for her and her family. After seeing tons of medical specialists, referral after referral, misdiagnosis, diagnostic tests, failed medication trials, she finally has a strong medical team and what may be her only chance for improvement, craniocervical fusion.
Photo 1: These pictures show Casey active in her work as a psychologist and educator before she became too sick to work.
Casey is the mother of a beautiful son. Unfortunately, illnesses keep her from parenting in the ways she would have chosen. Despite having much to contribute, she is limited in the amount of noise and stimulation she can endure at a given time or over the course of a day. Her energy limits prevent her from riding bikes or running together outside, for example. She is less involved with day-to-day activities, school, or play dates than she would like to be. For Casey and her family every day requires significant adaptation and compromise to be able to create their new normal. “Adaptive parenting” and “parenting from bed” as she calls it, my sister never ceases to impress me with her resilience and determination. Sometimes that means dinner in bed with mommy or quiet time laying and watching tv because that is all the energy that she can muster. She is an amazing mother, and this surgery is the possibility for her to be more involved and active with her little ones.
Photo 2: These pictures show Casey with her son, and the Hulk sneaking into her bag to keep her company at the hospital when family could not visit during the pandemic.
Neurosurgery: Craniocervical Fusion
Casey has Ehlers-Danlos Syndrome, hypermobile type, a genetic disorder that causes her to produce faulty collagen, affecting many systems in the body. The faulty collagen has caused the ligaments and connective tissue in Casey’s neck to be lax, which means that it doesn’t properly support her spine and skull. This is causing cranial settling and spinal cord compression near the base of her skull, and she has something called a Reflexed Odontoid. She suffers a host of disabling symptoms including: exercise intolerance, debilitating fatigue, intense, prolonged head pressure, orthostatic intolerance (difficulty remaining in an upright position), and she has been rendered largely bed-bound for the past few years.
Photo 3: The image on the left shows a healthy or normal MRI. A yellow circle on the image surrounds the odontoid bone. The brainstem alongside it is straight. The image on the right highlights the odontoid bone in purple; however, this bone is misaligned, and pushing backwards compressing the brainstem. This is known as a reflexed odontoid and can be related to loose ligaments.
Photo 4: This image offers an example of what a craniocervical fusion is. A skull and spine are shown with metal supporting the skull and fused to the spinal cord.
First, Casey will undergo a diagnostic procedure called Invasive Cervical Traction. During Invasive Cervical Traction bolts are attached to the skull and the skull is then lifted incrementally. Her symptoms, neurological findings, and anatomy will be closely monitored in an operating room. This helps determine the precise measurements needed for the best improvements so that this may be reproduced during surgery. Casey is expected to undergo additional major surgery a few months after the Invasive Cervical Traction procedure.
Second, Casey will undergo Craniocervical Fusion surgery. Craniocervical Fusion surgery involves lifting the skull to the appropriate position and fusing it to the spine, with the goal of stabilizing the neck and reducing the spinal cord compression. This surgery is believed to be her best chance at reducing, or potentially eliminating the intense, daily head pressure she has endured for years, and preventing further physical or neurological damage.
At this time there is no cure for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and no known permanent cure for Postural Orthostatic Tachycardia Syndrome (POTS) however, many patients who have had Craniocervical Fusion experience remission from these conditions. We are so hopeful that this surgery will help improve Casey's health and increase her quality of life!
Can you make a gift today?
Thank you so very much for visiting our page, and for supporting my sister, Casey and her family. Your gift will help the Shannon-Luna Family pursue this surgery with the particular neurosurgeon qualified to treat her. We hope you read and share her full story (below) in hopes that we will also raise awareness about her medical conditions and help others who may be in a similar position. Your contribution, no matter the size, will have an enormous impact in their lives! 
Photo 5: Casey with her son who is wearing a shirt that reads “Strong Like Mom.” They are both showing off their muscles.
Casey’s Healthcare Story
Casey has always been committed to public health issues, disability justice, and supporting those struggling. We worked together to write her story below in hopes that it might help others exploring similar health concerns, or increase awareness among medical providers seeing patientswith complex, multisystem cases. We hope you will share it with others to help raise awareness about the millions of patients with MECFS and associated conditions (such as EDS, POTS, and CCI).
A little over four years ago, I took the train to Manhattan to meet with a pain management provider who specializes in headaches. At that time, we were hopeful to have found a competent provider who seemed to have a plan for evaluating the source of the pain and finding a solution (I’d already had the pain for about a year. Eeek!).
Photo 6: Getting ready for one of several nerve blocks. Photo shows Casey standing, smiling, wearing a hospital gown.
Unfortunately, after several months, medication trials, MRIs, and multiple rounds of nerve blocks (ouch!) the head pain persisted and I was experiencing increasing fatigue. I was a new mom, working full time, and pursuing this rigorous medical treatment so tiredness seemed to be expected but mine was more than tiredness, and it was not going away with rest. Eventually the doctor referred me to other specialists.
I began seeing a Rheumatologist who specialized in treating Fibromyalgia, while we anxiously awaited an appointment with a neurologist with expertise in headaches (a 4-month wait, yikes!). One of the medications recommended by my doctors was denied by insurance (and much too expensive to pay for out of pocket - think upwards of $700/month) without a thorough sleep evaluation. So we also sought an appointment with a sleep doctor. The person we were referred to did not have an available appointment for 8-months. Yes, you read that right, 8-months, so we took the next available with a colleague (about a 4-month wait). In the meantime, I tried a new medication regimen but my functioning continued to worsen and eventually I could no longer keep up. My doctor recommended a semester off from my position as an assistant professor and I could no longer push myself no matter how much I wanted to. My body just could not keep up with the demands. While that was stressful and disappointing, my doctor was encouraging and optimistic that an extended period of rest (we anticipated 6-months) and finding the right medication would help.
During that time I continued with different medication regimens. If you know someone with chronic illness you might be familiar with the song and dance of medication trials or the graveyard of supplements that accrue over time. There have been lots of medication trials, all with a minimum of about 6-weeks before adding another medication or increasing a dose. It’s helpful and necessary to evaluate effectiveness but does feel like it prolongs the process. It’s also tough on your body getting through initial side effects, getting accustomed to persistent side effects, and then doing it all over again. I rested aggressively, tried to exercise and eat healthy, and worked very hard following the prescribed sleep behaviors while waiting on the sleep study (the wait for that next available appointment for the study itself was about 5+ months).
The summer of 2018 was a turning point in my quest for answers. I had appointments with several specialists but the most influential were the sleep study, a 2-day Cardio-Pulmonary Exercise Test (CPET), and an appointment with a national expert who ultimately confirmed my diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (MECFS).
I was experiencing intense fatigue regardless of how much or how well I slept. We soon learned that unrefreshing sleep is actually one of the hallmark symptoms of MECFS. My sleep does not alleviate the severe fatigue I experience regularly, and despite how much I sleep, I wake feeling unrested. Like many patients with MECFS, I struggle with daytime sleepiness, including sleep attacks, where an overwhelming sense of sleepiness comes on rapidly, and often without warning (not fun!).
Photo 7: I completed a nighttime and daytime sleep study to assess for things like sleep apnea, narcolepsy, and delayed sleep phase syndrome. Yes, I had to sleep with all of those wires attached to my head and body. No, it wasn’t comfortable!
After recovering from the sleep study (it was actually one of the tougher evals I’ve been through) I completed a 2-day Cardio Pulmonary Exercise Test (CPET). MECFS is typically diagnosed by excluding all other possibilities because there is not a blood test or other diagnostic measure to identify it yet. This makes it hard for people to get the correct diagnosis and often leads to patients experiencing years of referrals and misdiagnosis.
The 2-day CPET is being evaluated by researchers as a diagnostic measure and has been described as the "gold standard" in identifying MECFS. Unfortunately, not many doctors are trained in this yet but I was lucky to be able to participate.
Photo 8: You’ll notice there is a bed right beside me. After completing the trial I needed to immediately lie down. After recovering enough to sit up, I was escorted via wheelchair to my husband who was notified when to get the car to meet me right at the door. Photo shows Casey on an exercise bike attached to medical monitoring devices with bed on one side and computer on the other.
The results from the exam helped us begin to better understand my physical struggles and fatigue. I have a very low threshold for exertion. Typically, anaerobic energy is used for exercise that is performed at a higher intensity - like those cardio exercises that make you sweat. Unfortunately, my body uses anaerobic energy when completing simple day-to-day activities like getting dressed or brushing my teeth. That means when I complete these tasks it’s as if I completed a high intensity workout.
Very simple tasks cause me significant fatigue and exacerbate my symptoms (pain, brain fog, etc.). When I do exert energy, I experience something called post-exertion malaise, which basically means that my threshold is lowered even more. When I am experiencing post-exertion malaise, my functioning is estimated to be equivalent to that of an inactive 72-year-old, or an active 84-year-old. This is what causes me to be mostly bed bound and now I rely on a power chair to help me get around. At this time doctors and researchers alike do not yet know what causes these energy deficiencies in patients with MECFS, nor are there any FDA approved treatments for my illness.
After the 2-day CPET, I underwent a comprehensive pulmonary evaluation to rule out any lung pathology, and a thorough cardiac evaluation that included multiple diagnostic procedures (echocardiogram, EKG, 48-hour and 3-week Holter monitor, tilt table test, etc.) with several specialists over a period of months.
Photo 9: This is a compilation of images from the pulmonary evaluation. 
Photo 10: This image depicts Casey’s tilt table test. A tilt table test is used to evaluate the presence of POTS. After resting for an extended period, the table is elevated 60-80 degrees while your blood pressure, heart rate, and oxygen levels are monitored. During her exam she needed to be quickly lowered as She began to pass out. That is a risk associated with the exam and the reason they use the large straps to secure the patient to the table.
I was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a serious blood circulation disorder that significantly impairs quality of life. Some of the POTS symptoms I experience are: lightheadedness with risk of fainting, difficulty thinking and concentrating (brain fog), intense fatigue, exercise intolerance, headache, palpitations, and tremor. The specific cause of POTS is unknown and there is no known permanent cure; however, some patients who have a Craniocervical Fusion experience remission from POTS.
”In people with POTS, for unclear reasons that may differ from person to person, the blood vessels don’t respond efficiently to the signal to tighten. As a result, the longer you are upright, the more blood pools in the lower half of your body. This leads to not enough blood returning to the brain, which can be felt as lightheadedness (faintness), brain fog and fatigue. As the nervous system continues to release epinephrine and norepinephrine to tighten the blood vessels, the heart rate increases further. This may cause shakiness, forceful or skipped heartbeats, and chest pain.”https://www.google.com/amp/s/www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots%3famp=true
My head pain was yet to be resolved (actually, it’s something I still endure daily) and we learned that the symptoms of POTS can mimic cerebrospinal fluid leaks so we met with an ENT with expertise in this area. I was sent for a stat CT scan and after reviewing the images, I was immediately scheduled for surgery. Additional imaging revealed possible Eagles Syndrome, so we prepared for the likelihood that I would actually need two surgeries. My surgeries required a lot of bedrest and extended time for recovery, partly due to my other illnesses. Unfortunately, I am still experiencing debilitating fatigue, POTS, and intracranial hypertension causing severe head pain and pressure. The surgeries did help to alleviate an infection, reduce the amount of floaters I was seeing, and lessen the severe eye pain I had. Diagnostic measures and medication trials post-op, along with brain MRIs have lead my team to the current steps of pursuing invasive cervical traction and craniocervical fusion, as they believe the instability in my neck is contributing to a lot of my difficulties.
Photo 11: Pictures of Casey in the hospital before and after various procedures/surgeries.
This GoFundMe is not just a plea for help, it is a shining glimmer of hope and the type of support that keeps people going. It is hope that my sister can feel relief from years of persistent full body pain and unbearable head pressure. It is support to relieve some of these debilitating symptoms that prevent Casey and her family from sharing in simple activities together. It is hope that she can go outside and even visit the mountains she loves so much, hope that her story will improve the experiences of those in her situation. It is a gift to her husband to be able to focus on her health and healing, to take needed time from work to assist her traveling to and from procedures, support so that he can get some respite himself. It is the possibility of her attending karate and dance classes, parent-teacher meetings, swimming with her son. We are all so grateful to the patients and friends she has met along the way, to the healthy family members advocating for research and awareness, to people sending postcards to doctors and using every last drop of energy to attend annual #MillionsMissing events all over the world.
Photo 12: Millions Missing event in Denver, 2019 where Alberto contributed as a speaker.
