Help Violinist Amy’s Lifesaving Surgery & Recovery

MY STORY:

watch my story on news WFAA

seen.tv about my Locked-in Syndrome

Updating on Locked-in Syndrome started in August (11/30/2024):

Despite our hopes for a full recovery for the fusion site after 3 months, the actual recovery for the neurological deficit starts then. I happily started my PT and OT, but I lack a neuro specialist for the rehabilitation in my area. Travel was a big issue. The unexpected progression on 8/24/2024 led to further paralysis from the brain stem down. I found myself in a Locked-in state for hours in the hospital after repetitive hyperextension after a stroke-like episode on 8/22 evening. The hospital we transferred to had my entire history but decided to ignore my previous inpatient history or out-of-patient update information.

The devastating was making my condition continue to decline until 8/30, 11:30 am. While I was talking on the phone with my therapist on the hospital bed, I suddenly went into a locked-in state when I first noticed my speech stutter. It was almost the same time I stopped being able to respond; I felt the heaviness in all my limbs and extreme tightness in my diaphragm. An hour later, when the nurse noticed me, a small cough fit threw me into respiratory distress, and everyone noticed my decreased chest rise and continue deceased oxygen saturation. I had to get oxygen bleed in with my Bipap. Suddenly, I lost all my movement from the neck down. Even though I came out of the Locked-in hours later, this time, nothing came back, not even my breathing or speech (without Bipap).

The financial burden was substantial, with the hospital charging us thousands of dollars since our insurance restarted on September 1st. The doctors' insistence on a psychosomatic diagnosis was frustrating, especially when they could no longer ignore the respiratory failure. They indirectly caused with repetitive triggers into my hyperextension of the neck, and the misdiagnosis had serious consequences. I am now on a 24/7 non-invasive ventilator and require supplemental high-flow oxygen to breathe and speak since my accessory muscles can no longer assist with chest movement for speech. I multiple times went into extreme hypoxia and was saved from drastically increased 15L O2 during the hospitalization. They were all caused by reduced supplemental oxygen from the hospitalist's ignorance about my situation.

Due to the cost of hiring a PCA $20/hr average, $200/day, $6000 every month for 24/7 care, my parents are sacrifice their own personal time and relationship to come and take care of me when my husband is out for work.

My full story:

Hello! My name is Amy. As a dedicated violinist studying at the University of North Texas, music has been my life's passion. Yet, my journey has hit a critical crossroads due to a severe health challenge. I am reaching out for your generosity to fund a vital surgery that aims to halt the progression of my severe quadriplegia, affecting my C0-C2 and C4-6 vertebrae. This condition has stripped me of most of my motor functions and even the ability to breathe without assistance due to cervical instabilities, subluxations, and stenosis.

The past three years have seen my world transform—from an active musician from walking to limping to being unable to activate movement from the neck down and classified as a C1 motor complete quadriplegic, even a constant positive outlook can’t outweigh the profound changes in my body. The pursuit of my doctorate degree has been on pause, replaced with the continuous search for answers to my physical decline and constant pain. I have been desperate with no answer or treatment locally and took on the quest to travel across the states for an explanation and solution to a life with more independence and my once-upon violin playing without too much strategic exhaustion.

The curated surgical strategy, developed after thorough consultations with neurosurgeons well-versed in Ehlers-Danlos Syndrome, involves a critical decompression, alignment, and fusion of my upper cervical spine C0-2 and fusion to the mid-cervical spine C4-6. The complexity and severity of my case necessitate both anterior and posterior approaches to reduce multiple separate surgical procedures and optimize the chances of a successful outcome.

Your support through this GoFundMe could be the difference that enables me to undergo this life-saving surgery. No matter the size, every donation will bring me a step closer to recovery and the chance to bring music back to the foreground of my life—for the music that can once again inspire and touch the hearts of others.

Thank you for considering the support you provide to my campaign. I pledge to keep you updated on every significant milestone here and through my daily updates on Instagram at Thrive on Wheels .

Here is the detailed story of my medical journey and all of the logistic expenses for the surgery:

My medical journey:

I started playing my violin at three and a half. By middle school, I was very clear about wanting to be a professional violinist. Besides the thick glasses I had to wear to correct the delayed development until high school, jaw pain after PE class, GI discomfort, and lightheadedness when standing up fast, my body was functioning well enough to keep pursuing what I wanted in life. Even though I know now that those are the tail-tail signs of having a connective tissue problem like Ehlers-Danlos Syndrome, it is difficult for even physicians to connect the dots.

After I earned my bachelor's in music in China, I went to Louisiana State University for my Master’s again in music performance in 2012. While I started to have more and more pain and discomfort from eating. A minor whiplash accident also happened around the time that I started developing sporadic headaches that were thought to be okay just to take some ibuprofen.

I had a few rough years when I started my doctorate study at UNT in 2014. I started to have more random falls after the initial fall on the icy campus road in February 2015. I had a few years of seeking answers to my pain after eating, which was also going nowhere. However, the years I invested in the mental health realm helped me fix my relationship with myself, learn the essence of meditation, be at peace with myself, and have a constant positive outlook in life. I had a good year with physical symptoms in a semi-balanced state in 2019. I finished another solo recital with Bartok Violin Concerto and started diving into my dissertation writing.

How my Cervical Instability started in 2020:

I was at the finishing line for working on my doctoral dissertation while performing in many local symphony orchestras at the end of 2020. I wasn’t aware that I had such a genetic condition at the time, still. But just like how my shoulders and wrists have frequently been coming out of their sockets, a random knee subluxation occasionally, or still dealing with my jaw problem, when an innocent deprivation tank experience relaxed my neck muscle, it also brought more instabilities into the cervical spine. Except this time, it has stirred up the balance of my entire body. My autonomic system, like the heart rate and blood pressure, became very unstable. I was suddenly from being able to stand and practice my violin for hours to getting near-fainting episodes every day. Then, the mysterious seizure-like activities started on Nov 8th after fainting in a prolonged hyperextension posture, accompanied by temporary paralysis on my entire right side for an hour at a time. I wish I could go back to tell myself the real cause of the problem, but with research as rare as my genetic condition-related spine problems like CCI/AAI, none of my doctors could understand what happened to me then.

My pursuit of a doctoral degree had to be put on pause for the answer to my worsening symptoms since Spring 2021. But at least I was finally diagnosed with my genetic condition, Ehlers-Danlos Syndrome, where ligaments tend to be extra stretchy in laxity, which explains why I had so many subluxations in my joints, irritated nerves that aches when I eat, gastroparesis that takes it forever for digest my food, or random food or environment triggers an entire allergic reaction from my MCAS. What I discovered about myself in 2021 was still not enough for any doctors in my area to explain my right side weakness.

I had multiple health issues that were also triggered and declined at the same time after the start of my cervical instabilities. These previously unsolved misdiagnoses were gradually coming to light one by one due to several EDS-knowledgeable surgeons taking their time and effort to pinpoint and solve the source of the problem – such as my MALS (Medium Arcuate Ligament syndrome) surgery in 2022 and releasing my tethered spinal cord in 2023.

Function loss – Walking to Neck-down Paralysis:

For my tethered spinal cord, it was that quick. With every sudden stretch to the cord, from right leg paralysis to both legs affected, to paralyzed hips and entire trunk, I started from using the cane to the rollator to using a heavy-duty wheelchair within only a few months (6/2021-12/2021). All of those didn’t stop me from traveling for orchestra performances with my hand control for driving and ultralight wheelchair to propel myself with. But that was when my neck lost its last stabilization – everything from the chest down was paralyzed in motor function on December 21, 2021.

Due to none of the doctors or surgeons in my state being able to find or acknowledge the cause, no treatment or therapies have been provided. A cervical collar was not suggested by many health providers. No one at the time knew what was going on. 2022, therefore, became the year of my loss of almost all functions in my arms and hands, from a C4 quadriplegic with still decent upper body strength for a manual wheelchair in January to a C1 quadriplegic in October, unable to shrug my shoulders and struggling to take any deep breath and moving onto a power wheelchair user. Although I was in physical therapy since 2021, did dozens of nerve blocks, and finally started using a customed cervical collar in 2022, my symptoms only got worse, and the amount of pain just kept increasing.

Journeys to the Answer:

Even though the first two surgeries were important in restoring my function in eating and halting the progression of the deterioration of my lower body, being able to play my violin effortlessly became impossible with so much weakness in my upper body. When we thought we were lost in finding the answer while the symptoms were getting more and more debilitating, we finally had dynamic MRI imaging and CT scan that revealed the severe instabilities at multiple levels. The findings also match with my severe symptoms:

Symptoms:

Diagnoses that indicated for surgery:

After we found a top neurosurgeon who specialized in treating CCI, AAI, and instabilities in EDS patients last October, confirming the exact worries we have about those irritated nerves and compressed brainstem & spinal cord, I was offered a surgeon urgently. The surgeon recommended two decompression and fusion surgeries in one: from posterior C0-2 and anterior C4-6:

Suboccipital decompression, open alignment (reduction), stabilization from the occiput to C2, fusion O-C2, bone harvest, and anterior cervical discectomy, fusion, and plating C4-6.

, which can reduce the amount of recovery time and maximize the success rate. However, the traveling and surgery will be fully my responsibility, as I have been exhausted financially over the last several years with regular treatments and two major surgeries (in Connecticut and Rhode Island). Every flare-up scared me more as I felt the need for more ventilator support; I experienced unresponsiveness and severe headaches (occipital neuralgia), and nothing helped. Since the main cause of the downfall was those instabilities in my cervical spine. This will be the surgery for any entity’s wish to halt the progression, save my life, and possibly regain some strength to rescue my career as a violinist.

Logistic expenses for the surgery:

Total expenses estimated through the current flight/hotel rates = $50,000

Your support through this GoFundMe will help fund this critical surgery. Every donation, no matter the size, will bring me a step closer to recovery and a brighter future. Thank you for considering my campaign and for any support you can provide.