Fighting Syringomyelia

Hello everyone! My name is Kaysha and I just turned 30 years old. I am so sad to ask for help (right after the holidays no less) but I am unable to afford the costs of a surgery in Spain to correct the advancement of my diseases that can lead to paralysis and even quadriplegia. A quick summary: I have been suffering with multiple spinal conditions which have rapidly progressed to affect my everyday life - Syringomyelia, Tarlov cyst disease, Levoscoliosis and Occult tethered cord syndrome. Most of these can be linked to a tight filum terminale or “The Filum disease” and can be operated on at a specialty clinic Institut Chiari & Syringomielia & Escoliosis de Barcelona in Spain for a devastating 19,300€ or $28,012.62 CAD as of Jan 16, 2023; which does not include my flights or accommodations. The surgery is getting increasingly more expensive as the Canadian dollar to Euro continues to fluctuate.

My symptoms include but are not limited to: episodes of peripheral neuropathy - numbness, weakness in my arms and legs which has caused permanent foot drop, constant levels of pressure and crippling pain throughout my body, incontinence of my bowels and bladder, urinary retention/frequent UTI’s, muscle spasms, loss of dexterity, severe episodes of vertigo, fatigue, decline of concentration and memory, instability, migraines, altered reflexes, and dysphagia (difficulty swallowing). These cause me an incredible amount of grief and loss in my everyday life. I was a very active person until my physical deterioration became unbearable. My passions include: aerial acrobatics, roller skating, hiking, swimming, bike riding, camping, dirt biking, running, and caring for my family and pets. Now I fight every day just to feel normal again while inside my body is failing me. I currently work part time in the hospital lab as a phlebotomist; I struggle to make it through a shift. I dream of a future where I can comfortably go for a walk with my dogs and not worry that soon I may not be able to walk at all.

The Syringomyelia is cysts or “syrinxes” that run inside the majority of my spinal cord at a width that are already causing significant damage. Some patients with this disease have smaller syrinxes than I do and are permanently disabled - relying on a wheelchair. They believe I was born with Syringomyelia as well as Occult tethered cord. It is very difficult to find health professionals who have knowledge on these conditions. I have tried all the resources Canada has to offer including surgery, chiropractor, neurologists, physiotherapy, massage, and countless medications but my symptoms have gotten progressively worse through the past couple years. My neurosurgeon told me the Canadian government will not pay for this to be done in Spain; even though they were unable to safely perform the full surgery in Foothills hospital, Calgary on June 29, 2022. The goal was to section my filum terminale (“de-tether” my spinal cord) and remove Tarlov cysts from the nerve roots at the bottom of my spine - they were unsuccessful in performing the filum cut. The chances of my cord re-tethering would have been very high though this method as well. Luckily, they were able to remove the Tarlov cysts which has had some benefit (way less incontinence!!). Their next step is to place a shunt in my spinal cord. This is extremely dangerous; however, it is the most common surgical treatment for Syringomyelia in most of the world. Spains’ specialty clinic for my conditions uses a minimally invasive technique so this risk is very low compared to my previous surgery or spinal shunting which could cause paralysis instead of preventing it. The surgeons in Spain will treat the root cause of my diseases instead of putting another band-aid on it.

I have sent all my medical records and images to the clinic - Institut Chiari & Syringomielia & Escoliosis de Barcelona and they have been wonderful and supportive to deal with so far. They even sent me a Christmas card! I have talked to many Syringomyelia patients who have had wonderful success with this procedure and urge me not to wait until the consequences are irreversible. There’s a small amount of savings I have to go toward the costs; however, this is so much and I only work part time because it is all I can handle. Thank you to everyone who took the time to read this and those who have helped me along this journey so far (including having the courage to write this!) I know times have been tough for us all lately and even small donations would truly mean the world to me.