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Hey, y'all! I'm Syd, a disabled 32 year old parent of 2 amazing kiddos, living with my partner on our small farm in Western NC.
I have suffered with severe chronic pain since early childhood, my earliest memories of this starting at age 5. But over the past 10 years, my physical disabilities have unfortunately progressed to a miserably debilitating level. Specificially, my Syringomyelia & Demyelinating Disease of the Central Nervous System. This has left me with oftentime 10/10, unbearable daily pain, increasing mobility issues & an overall very poor quality of life.
There are very few options available for me here in the US, other than long term use of pain medications & a last resort, a very high risk with low, or no reward spinal shunt operation. Neither of which I see as a realistic option. Neither of which improve, but rather further hinder my quality of life.
That being said, there is some hope on the horizon! After doing immense research on treatment options, we found Institut Chiari & Syringomyelia & Escoliosis of Barcelona, Spain. Dr. Miguel B. Royo Salvador & his amazong team have been providing minimally invasive Filum Terminale Sectioning operations on folks with some of my main disabling conditions for years now, seeing incredible results. This is something my family & I truly feel is my best chance at improving my quality of life & maintaining my mobility & physical autonomy.
To give you a little background:
I live with
▪︎Syringomyelia
▪︎Demyelinating Disease of the Central Nervous System
▪︎Chronic Migraines
▪︎Occipital Neuralgia
▪︎Trigeminal Neuralgia
▪︎Degenerative Disc Disease
▪︎Osteoarthritis
▪︎Spinal Stenosis
▪︎Spondylosis
▪︎Spondylolisthesis
▪︎Radiculopathy
▪︎Paresthesia
▪︎Dysesthesia
▪︎Chronic Fatigue
▪︎Chronic Pain Disorder
▪︎ & more...
I have had 2 major spine surgeries, so far, that have provided little, to no relief. And there are no other reasonable surgical options for me within our healthcare system here in the US. Especially when it comes to Syringomyelia.
Syringomyelia is "the presence of an intramedullary cyst (syrinx) filled with clear fluid, within the spinal cord." The longer the condition is left untreated & the more the syrinx cyst increases in width/length, the more permanent spinal cord & nerve damage is done, as well as my risk for paralysis greatly increases. 5% of paraplegia cases in the US are from Syringomyelia each year, yet less than 50,000 people total in the US have the disease.
My Syringomyelia is in my Thoracic spine. The syrinx spans from T4-T10 in the center of my spine, so 6 vertebrae long. Some of the symptoms from this that I experience each day include:
▪︎severe daily, full body pain
▪︎muscle weakness in all limbs
▪︎numbness/tingling in limbs & face
▪︎severe stiffness & full body tension
▪︎increase in migraines & other headaches
▪︎loss of sensitivity to hot/cold OR overly sensitive to hot/cold
▪︎dizziness/balance struggles
▪︎chronic fatigue/unable to sleep
▪︎urinary dysfunction
▪︎sexual dysfunction
▪︎very low quality of life
Very few doctors here in the US are well educated on this type of disorder, let alone understand how to treat/care for patients living with it. A physician once told me, "The most experience I've had with Syringomyelia was in my Grad School textbooks." So, my best option (in the entire world) to stop the progression of this disease & remove the very real risk of paralysis, is The Institut Chiari & Syringomyelia & Escoliosis de Barcelona in Spain. They have been successfully performing a minimally invasive operation that sections the Filum Terminale for years now. This procedure will not only stop more cysts from developing within my spine, but it will also stop this disease from causing further permanent nerve/spinal cord damage & could even help improve some of the symptoms I live with!
The main problem is - that it costs over $30,000 out of pocket just for the surgery, let alone all that goes into traveling to Spain, staying there while I recover & more. To put it into perspective, I have never even had a passport, as I'm unable to afford any type of foreign travel. The immense amount of medical debt that I owe here in the US (just trying my best to receive basic treatment/care) is a testament to my inability to afford the Filum operation. Not to mention, my conditions make it impossible for me to physically work, leaving us with absolutely no possibility of financing this necessary, life-changing operation.
I set the goal at $60,000 to try and cover the cost of the surgery, travel/lodging expenses, additional medical costs associated with before & after the actual procedure, as well as trying to chip away at the thousands of dollars worth of medical debt that I have had to take on here in the US as my conditions progressed.
I have spent the last 10 years begging physician after physician to truly listen to me & take my severe symptoms seriously. And now that I FINALLY have some answers & a path towards a somewhat brighter / healthier future... I just need some help from my community to get there.
I will keep updating this page with new information, as I receive it.
Thank you to everyone who has taken the time to visit this page and read my story. Every dollar, every penny, even just well wishes mean the world to me & my family. We take care of each other! ♡
Co-organizers (1)
Syd Stoik
Organizer
Asheville, NC
Chad Mayer
Co-organizer