Emmalyn's Journey
Emmalyn's journey began at age three with a diagnosis of Chiari Malformation and syringomyelia, leading to a Chiari Decompression surgery aimed at draining fluid-filled cavities in her spine. Unfortunately, the surgery wasn't successful, propelling her into a series of medical procedures and surgeries. The ordeal started with chemical meningitis, followed by a diagnosis of occult tethered cord in 2013, necessitating the first of four detethering surgeries.
Over the next two years, Emmalyn continued to suffer from headaches and leg pain, culminating in her third and final decompression surgery in November 2015. This surgery initially seemed successful until December, when a squishy bump was discovered on the back of her head, leading to a diagnosis of pseudomeningocele. This marked the beginning of a downward spiral due to damage to her dura, the lining of her spinal cord, triggering a series of devastating health issues.
Since her first surgery in July 2012, Emmalyn has endured three Chiari Decompression surgeries, a plate in her head for Craniocervical Instability (CCI) caused by a previous surgery, spinal fusion throughout her cervical region, hardware removal, numerous infections, shunts, 6 CT Myelograms, a Cisternogram, several lumbar punctures, multiple MRIs, blood patches, a fibrin patch, ICP bolts, anti-siphoning devices, EVD drains, and various spinal fluid leaks. Her diagnosis of Ehlers Danlos Syndrome necessitated dural patches with muscle flaps and tissue harvesting. This is not an exhaustive list of her medical procedures. Currently, Emmalyn lives with four shunts, experiences intense spinal pressure issues, and suffers from severe scar tissue in her spine. She endures constant, severe lower back and head pain and has limited use of her left leg due to a developed tremor, necessitating the use of a cane.
Adding to her challenges, Emmalyn was diagnosed on November 15, 2021, with Adhesive Arachnoiditis by a neurosurgeon in Rhode Island. The diagnosis revealed serious cauda tethering, a syrinx, and extensive scarring. An arachnoid cyst in her lumbar area was also identified, likely contributing to her debilitating left leg tremor.
In early 2023, Emmalyn's leg pain worsened, leading us from Chicago to California for a specialized MRI and consultation with Dr. Tennant, an adhesive arachnoiditis specialist. The MRI revealed a significant growth in her cyst, necessitating fenestration. This discovery prompted another trip, this time to Durham on March 5th. On March 9, 2023, Emmalyn underwent a six-hour surgery to fenestrate the cyst, install a shunt, and detether her lumbar spinal cord, hoping to alleviate her leg pain. While this surgery reduced her lower back pain, she continued to suffer from positional headaches and vomiting.
An infection on April 6th prolonged our stay, and we didn't return home until April 13th, turning a planned two-week trip into a 37-day ordeal. Emmalyn's health challenges persisted, necessitating return visits to Durham for further consultations and treatments. Her hematologist referred her to Immunology, and Neurosurgery aimed to address her severe head and neck pain.
On May 22nd, the need arose to reset Emmalyn's shunt due to increasing pain. After numerous attempts to adjust the shunt, Dr. Grant consulted with the shunt manufacturers for a solution. Plans for further trips to Rhode Island and North Carolina were made for comprehensive MRI scans and EDS pain management.
Despite these efforts, Emmalyn's condition did not improve. A risky surgery was scheduled for June 13th, aiming to address tethering and cerebrospinal fluid blockage. The six-hour surgery led to an extended stay in North Carolina.
On August 10th, a lumbar puncture was conducted to investigate Emmalyn's persistent head pain. Unfortunately, this procedure did not provide the desired outcomes, leading to a MR Myelogram that revealed a significant spinal fluid leak. WThe decision was made to do a nuclear med study of her shunt to make sure all was working well. After the test results came back it showed that her vp shunt was not working properly and had to be revised. At this point her neurosurgeon decided to change her valve of her vp shunt back to the strata valve. Emmalyn went back into surgery for a VP shunt revision on August 17th. After a 2 ½ surgery they came out and all went well. After 5 days in the hospital she was released to the hotel. Emmalyn’s positional pain of being upright versus laying down was getting worse. More MRI imaging was done every few days to keep eyes on things. On September 1st Emmalyn woke up with a large bulge in the back of her head and after emailing with her neurosurgeon who thank god was on call the decision was made to go to the ER. After imaging was done it was determined she had a large pseudomeningocele at her craniectomy site. She was immediately admitted to the hospital and her neurosurgery team was paged. We were told that Emmalyn would be going into surgery #3 within the last 2 months the next day. Emmalyn went in for a craniectomy on September 2nd. She had a visible leak at the corner of the dural patch. After 4 ½ hour surgery it was repaired and Emmalyn would remain in the hospital for 10 days to recover. She was released and after shunt adjustments, follow up MRI’s and appointments Emmalyn was free to return home on October 15th, but still in her baseline of 10/10 head pain and now her back pain has returned at 8/10.
Throughout her challenging journey, Emmalyn and her family have traveled extensively, seeking answers and treatments. Their journey has included flights and long car trips, accompanied by significant expenses for accommodation, meals, and other necessities. The financial burden has been overwhelming, reliant on the generosity of friends and family.
In total, Emmalyn has undergone 54 surgeries on her brain and spinal cord. Recognizing the incurability of many of her disorders, Emmalyn's mother, Stephanie, has dedicated herself to advocating for research and multiple medical opinions. She offers support and advice to other parents navigating similar battles, emphasizing the importance of solidarity in these difficult journeys.
Currently, her family is exploring non-surgical methods to manage her pain, focusing on less invasive treatments. They have enrolled her in Dr. Pascal’s Health Institute, which involves significant costs for the treatment, food, and lodging, amounting to over $50,000—expenses not covered by insurance. Given the urgent need to find alternative treatment options outside of surgeries—which are no longer an option—they raised $30,000 to enroll her in the program and to secure housing for her family. They have decided to continue fundraising the remaining $20,000. So far, Emmalyn is seeing progress but is in danger of having to stop the program unless the remaining funds are raised soon. To find out how to donate and to learn more about Emmalyn's Journey, please visit her website at: Emmalyns-Journey.com or click on the "Donate Now" button below.