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Help Violinist Amy’s Lifesaving Surgery & Recovery

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Update 5/27 Two Months and Two weeks of Progress and Challenges
I want to express my deepest gratitude for your unwavering support and generosity. Your contributions have helped me successfully go through the most challenging part of this journey - the surgery.
It's been a while since my last update. I spent so much time in podcast launching Occult Awareness | Telling the Undiagnosed Journey. Unfortunately, alongside the excitement of the launch, the non-existent spasms after 7 weeks have started returning. I've been dealing with increasingly stronger spasms at night. These spasms, often involved in my back painful arching, attempted hyperextension of my neck, have been painful and made it difficult to get restful sleep, adding to my overall exhaustion.


I shared on my YouTube about how additional spasms at night and increased muscle relaxers made my hands very flaccid. I did find ways to compensate for playing my violin.
Additionally, when I'm too upright for extended periods, my vision start gets blurry and dizziness increases. So I have been taking breaks and finding a balance in controlling symptoms. It is way less than before the surgery.


Podcast Launch and Interviews
It has been a great passion of mine to continue the work of self-advocacy in my health journey but also help others too. With my neuro PT aligning with this part of my passion, I've initiated and tirelessly worked on launching my podcast, "Occult Awareness," which aims to uncover hidden narratives and overlooked challenges in the world of rare and undiagnosed medical conditions.
The process has been incredibly rewarding but also exhausting. The workload has been intense, from conducting interviews to editing episodes. Adapting my workflow to accommodate my symptoms has been a significant part of this journey.


Adapting and Moving Forward.
While producing podcast, continuing writing my dissertation, forming a possibly nonprofit social enterprise has been a lot seems all together, but I am taking a step at a time, also keep my audience transparent.
Looking ahead, I am doing some outpaitnet PT now, although it's just some passive range of motion, it is better than stay in the chair all day. I also hope to manage my symptoms more effectively, find the right combos of muscle relaxers for my spasms and dystonia.
3 month follow up (June 10th) is apporaching! I will fly back to Maryland to see my surgeon in person. We have to sort out the travel plan now and your continued support means the world to me, enabling me to pursue these necessary treatments while also dedicating time to the podcast.

Thank you once again for your kindness and generosity. Your support is not just financial; it's a reminder that I'm not alone in this journey, and there will be a light for all of us who suffered with underfunded area of our body: the brain stem..

With heartfelt thanks,
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MY 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:
  • occipital neuralgia, vision changes, dizziness, fatigue, difficulty with swallowing, dystonia, bladder and bowel dysfunction, severe weakness in all four extremities, breathing issues, weak diaphragm, nerve pain, and many more.
Diagnoses that indicated for surgery:
  • Instability in the upper cervical spine - C0-1 & C1-2 rotational
  • - the region where the skull (occiput) connects to the first (atlanto) and second (axial) cervical vertebrae, affecting left & right side
  • Subluxation of C1/C2 cervical vertebrae
  • - partial dislocation) of the first and second cervical vertebrae.
  • Subluxation of C4-5, C5-6, degenerative disc & stenosis,


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
  • Surgery fees (self-pay): $26,119
  • Flight expenses for Surgery: 3 people total (me and caregivers – dad and husband) $1150
  • Arriving 3 days prior to surgery (3 days of hotel stays – 1 room)
  • 1st post op visit (March 21st)- 7-10 days after surgery -in person (7-10 days of hotel stays, including caregivers, 1 room): total 13 nights: $2200
  • (2nd post op visit - Only if needed)
  • what didn't think about: transportation - Non-emergency Transportation $400 & accessible van rental (DFW airport -> home) $160

  • follow up appointments (transportation)
  • 3rd post op visit (June 10th)- Must be done in person and within 90 days of the surgery date.
  • Boarding fees:
  • flight tickets- 3 people total (me and caregivers – dad and husband) $1300
  • Hotel check-in: $300
  • Post-operative care: due to severe quadriplegia with a ventilator (24/7) $18,000
  • Average $25/hour caregiving, 8 hours/day
  • 3 months of recovery time is estimated for wound healing.

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.
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Donations 

  • rachel stokes
    • $10 
    • 4 d
  • William James
    • $50 
    • 11 d
  • qiuge zhang
    • $5 
    • 18 d
  • Miriam Strulik
    • $10 
    • 23 d
  • Marcin Parys
    • $100 
    • 23 d
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Fundraising team (4)

Amy Wang-Hiller
Organizer
Denton, TX
Dayna and Peter Mondelli
Team member
Dan Fedorisko
Team member
jin wang
Team member

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