Mistreated and dismissed by many, she has persevered
In 2012, Savannah Orth was a 14-year-old competitive swimmer with dreams of the Olympics. A disciplined honor roll student, Savannah never could have imagined her life would veer off course.
During swim practice in November 2012, Savannah experienced intense rib pain. She brushed the discomfort aside—until it progressed to the dislocation and subluxation of her ribs and shoulders. She learned she had idiopathic scoliosis and started to wear an uncomfortable back brace.
Worsening symptoms dismissed as anxiety
Months later, Savannah experienced abdominal pain that took her breath away. Believing she had appendicitis, doctors performed surgery. Yet the pain continued, and Savannah experienced stroke-like symptoms. She was unable to speak or stand, her vision was impaired, and she developed piercing headaches that caused uncontrollable vomiting. Savannah was living a nightmare that doctors made worse by dismissing her health issues as anxiety symptoms.
By April of 2014, Savannah’s nerve pain escalated in her left foot, which became swollen, purple, hypersensitive to touch and immovable. Her doctors diagnosed complex regional pain syndrome (CRPS), a chronic neurological syndrome.
Bizarrely, Savannah’s health care providers still believed most of her symptoms stemmed from stress. One doctor said: “I see a lot of girls your age with headaches. You are fine. There is nothing physically wrong with you.”
Support team swings into action
As Savannah regressed, her parents became more proactive, reaching out to anyone who could help. They found a renowned pain management and rare disease specialist, who spoke in-depth with Savannah’s mother, validating her daughter’s experiences. He became their lifeline, taking time from his busy practice to help and connecting the Orths with a family who had a daughter with similar symptomology. They, in turn, introduced Savannah’s family to a specialist about two hours outside their home in San Diego.
The new doctor was thorough, compassionate and understanding. He diagnosed Savannah with dysautonomia, or dysfunction of the autonomic nervous system. For the first time in almost two years, Savannah felt heard and believed.
Sadly, her local doctors disagreed with the specialist. “Everyone thought I was crazy and making it all up. I was told I wasn’t trying hard enough to get well,” she says.
A barrage of diagnoses
The next few months brought more diagnoses, including type 3 Ehlers-Danlos Syndrome (EDS), and Savannah found herself in and out of the hospital for pain control and vomiting. Referred to as hypermobility EDS, the condition causes the body’s connective tissue to form improperly, causing loose joints and hypermobility.
The family traveled to get treatment. Savannah was diagnosed with gastroparesis, a condition that prevents food from moving through the digestive system properly… explaining her constant nausea, vomiting and inability to tolerate food.
A neurosurgeon in another state discovered Savannah also had cervical instability. Her cervical vertebrae were loose and unstable, compressing major nerves, and she was prescribed a neck brace.
With more answers came more struggles. After falling down without her neck brace in September 2014, Savannah’s stomach stopped working entirely and she was unable to stop vomiting. At the local hospital, doctors tried multiple unsuccessful modalities for administering nutrition, and Savannah spent the next 70 days in-patient, at times connected to a total parenteral nutrition IV (TPN).
Improper treatment aggravates symptoms
Hospital protocol placed Savannah in-patient in the “medical behavioral unit,” and those treating her dismissed her gastroparesis diagnosis, saying she had an eating disorder. Her crippling neck and head pain were dismissed as “attention-seeking.” Savannah was told by hospital staff that her parents were frustrated with her lack of improvement and they “did not want the burden of a child like her.”
Concerned for their daughter’s safety, her parents stayed with Savannah constantly. Although she suffered terribly, she worked on meditation, biofeedback and started coloring to distract herself.
Rather than address the anxiety the excessive pain was causing or alter the pain management strategy, the doctors placed Savannah on suicide watch with a constant “minder” in the room at all times. She and her parents felt completely helpless, but after many attempts finally convinced a doctor to release Savannah. The family left the hospital and traveled immediately to Texas to seek better treatment.
A year later, Savannah still has post-traumatic stress from those horrific months. Her physical, mental and emotional scars are very real. “It is hard to think about what they said to me about my parents not wanting me,” she says. “They never took my health seriously and I suffered greatly because of that.”
Caring doctors, positive results
A fantastic, caring group of doctors in Texas made a huge change to Savannah’s treatment regimen. They listened, worked as a team across different disciplines, ran appropriate tests, and quickly took her off medications that were damaging her heart and immune system.
A permanent gastrostomy-jejunostomy tube (G-J tube) and Broviac central catheter means Savannah can now tolerate her feeds and has been off TPN ever since. She receives IV fluids through the broviac, which helps manage her dysautonomia. She also uses a noninvasive electrical stimulation device, referred to as VECTTOR, which calms her nervous system and helps with pain and nausea. Savannah also relies on meditation and breathing exercises to calm her down and distract her from the pain.
Savannah continues to face challenges. She is still on medication for nausea, convulsions and nerve pain. Recently, a neurosurgeon discovered she had a degenerated disk that needed replacement, and bone spurs digging into her spinal cord. The neurosurgeon pointed out that her gut problems may be related to her neck injury; and the nerve compression and damage found during the surgery was extensive. The doctor was shocked that no other clinicians had taken her head and neck symptoms seriously.
For the first time in a very long time, Savannah’s symptoms are improving. She once again has hope: “I may never swim competitively again, and it may take me a frustratingly long time to be able to eat normally, but I have hope,” says Savannah. “And that makes all the difference.”
Unnecessary obstacles—and enduring strength
Savannah faced countless obstacles to proper care because a pediatric neurologist first diagnosed her with generalized anxiety disorder. Many doctors chose not to listen and hurried her out of their offices. Her symptoms were dismissed as being psychosomatic. It saddens her to think she once doubted herself as well, believing the doctors must have been correct: she had to be crazy.
Her advice to peers is to find a doctor who believes in you. “There is still a misguided viewpoint that doctors have all the answers, and that is not the case,” she says. “For too long, I was written off by inaccurate first impressions. Being stigmatized and judged led me to second-guess myself. I just hope others know their pain is real and nothing is wrong with their minds. I hope they don’t give up. Find someone who will help.”
Savannah also wishes more medical personnel could differentiate between anxiety and chronic pain. “I had anxiety because of my pain, not the other way around.” This is a common misconception impacting many young people, especially girls. “Hearing that the pain can’t be that bad or blaming the patient isn’t right,” says Savannah. This only leads to the patient feeling unnecessary guilt and shame. “Chronic pain is truly a long-term battle. There has to be compassion in treating pain,” she says.
Social support from all directions
Savannah has an amazing support structure in her school, friends and family. She is also taking some classes online, which gives her the flexibility to learn when she feels best. While she could graduate with her classmates, Savannah is choosing to retake classes to improve her grade point average and make sure she fully understands the curriculum.
Savannah’s family has been her rock. Her mother and father, brother and extended family give her love, strength and reassurance. Her parents believe in Savannah, tirelessly fighting for her. When she needs encouragement, they give it to her; when she needs space, they understand. Because of their support, Savannah can cope.
Social media has also opened a world of support. “On my bad days, it is a way for me to ‘get out of my house’ in a sense. I feel like I am still participating in life,” she says.
While much has changed for Savannah, she doesn’t let pain define her life. “I still want to experience all the things I once assumed were just a normal part of growing up,” she explains.
In the meantime, she is focusing her efforts on making a difference today. She created a blog to chronicle her journey; one of her posts, a letter to her disease, was even published on “The Mighty,” an online forum for families and patients dealing with illness.
Savannah Orth is a brave young woman who refuses to give up. It is her stubborn determination that allows her to handle life’s challenges. Adventurous and independent, she is finding a way to push forward one day at a time.
“I am not ashamed to admit there was a time when I lost hope and my life was bleak. Pain has taught me that bravery doesn’t mean always being happy; sometimes crying is the only way to help you heal. I’ve also learned my identity isn’t based on what is in my life right now. My identity is what I choose to make it.”
A Letter to the Illness I Thought I Was Too Young and Healthy to Get (“The Mighty”) – bit.ly/savannahorth
Feeding Tube Awareness: www.feedingtubeawareness.org
Global Genes – www.globalgenes.org
The Coalition Against Pediatric Pain – www.tcapp.org
The Sick Chick – www.thesickchicks.com