Tara's Tarlov Cyst Surgery

My story brief synopsis:

My name is Tara, from BC, Canada. I was diagnosed with Tarlov Cyst Disease (TCD) in April 2024, a rare condition causing excruciating pain and mobility issues. Despite the severity of this condition and my quality of life being diminished, effective treatments are limited, and Canadian doctors lack awareness, leaving me to navigate treatment options for this rare illness alone. I urgently need surgery, which is only available abroad, and I need your support to raise $85k CAD for the life-changing procedure. I want the chance to be able to regain my health so I can continue my work in ecological restoration and continue to conserve our natural world.

My story, in detail:

Hello, my name is Tara and I live in BC, Canada. In April of 2024, I was diagnosed with Tarlov Cyst Disease (TCD). TCD is a rare neurodegenerative disease of the spinal nerve roots inside the spinal column that can lead to intense pain, loss of body function, and paraplegia. An estimated 9% of the population have Tarlov cysts and among those, an estimated 1% are symptomatic. Currently, there are only a handful of effective treatments available. For many TCD patients, neurosurgery is the first line of defense, performed by one of four surgeons worldwide. The surgery has a 2-5 year recovery and an estimated 70% success rate. Currently, limited research is being conducted on TCD, and patients, of which an estimated 60-80% are women, are left to navigate a medical system that marginalizes them, mostly because there are few answers. Symptomatic TCD often generates incredible, indescribable suffering for patients and their families.

For the past 9 years, I have been running an Ecological Restoration company in the Lower Mainland of BC whose aim is to provide habitat conservation and restoration services to previously disturbed aquatic and terrestrial environments in the west coast region of British Columbia. I have also been involved with a local environmental non-profit for the past 8 years that provides education and stewardship opportunities to youth and community members to help them connect and learn about our natural world.

For the majority of the time I have been involved in environmental work, I have been in the field 5 days a week pulling invasives, planting plants, stabilizing slopes, and monitoring wildlife in rain, wind, and snow. This work has always been very physical, which had never been a problem until last year. Last summer I started having sciatica pain in my leg after planting some native plants. This pain has been ongoing since last July and it has made it harder and harder to do any field work. I have still made it a priority to get out and do site visits, and be there for events, but it has been at a much reduced extent than previously. This adjustment was frustrating, as I enjoy fieldwork, but I was making it work. During this time I was trying everything I could to remedy the sciatica pain I was having. I went to physio, tried IMS (intramuscular stimulation), massage, and was even getting regular trigger point injections. None of these treatments made the pain go away for very long.

In April of this year, I started experiencing more extreme nerve and body pain, the worst I have ever experienced in my life. It came on very suddenly and was debilitating. I was bed-bound for several days, it was impossible to walk, and I ended up having to go to the ER four separate times during a two-week period. At one of the ER visits, I was given an MRI that showed I had several cysts on the nerve roots at the base of my spine. These cysts are filled with CSF (cerebral spinal fluid) and can cause severe neurological symptoms. I have 5 of them and have been told by several doctors that they are “almost always asymptomatic”. Well, I must have won the worst lottery ever because mine are causing symptoms. When my symptoms flare up I can’t walk, can’t stand, have continuous excruciating muscle spasms, have pelvic pain and numbness, bladder/bowel issues and the only thing that mildly helps is lying in the bathtub for prolonged periods. During these painful flare-ups, I have been forced to use a wheelchair just to move around my house. Since my symptoms became severe, I have experienced several pain flares that last for weeks at a time. It has completely reduced my quality of life and my ability to properly run my business and be involved in the environmental community.

TCD is a progressive illness, so I expect to continue to have painful flare-ups that will significantly impact my quality of life. There is little to no help from medical professionals in Canada, as most doctors do not acknowledge this as an illness at all. In British Columbia, I have not gotten much medical assistance whatsoever. I have been referred to one of the 2 neurosurgeons in Canada who acknowledge Tarlov Cysts, but my appointment isn't until August 2026. Navigating this health issue has caused me to lose faith in the Canadian medical system. As this is a relatively rare condition, doctors in Canada have not often come across patients with Tarlov cysts that are causing such severe issues. As such, most of them do not know how to help. This leaves me trying to manage the illness on my own. Thank goodness for the internet, as I’ve been able to connect with others and have gained knowledge and resources from people with the same condition. The general consensus is that without surgery, I will keep getting progressively worse as the cysts will continue to compress my nerves, eventually leading to irreversible damage.

Currently, there are only a handful of Neurosurgeons in the world who are seeing patients with this rare disorder and are willing to attempt treatment. One of those Neurosurgeons is Dr. Frank Feigenbaum. I spoke with Dr. F and he said I am a candidate for surgery. Sadly, as a Canadian, insurance won't cover out-of-the-country surgery, and with our current exchange rate, the cost of the surgery is extremely high. To receive this life-changing surgery, I have been quoted $85,000 CAD, not including travel costs to Cyprus, Turkey, where the surgery will take place at an international hospital. This is a monumental cost that I am unable to cover by myself, but without this surgery, I am going to be severely impaired and it will be impossible to keep functioning in any normal capacity. I need to go ahead with the surgery, even though it is scary and the recovery will be long and hard (2-5 years).

Since my cysts became symptomatic, I have not been able to do any field work. I have barely been able to be on-site with my crew at all. Travel is impossible. Even going to the grocery store or walking around the block have become arduous and painful tasks. I want to be able to keep working towards conserving our natural world, protecting wildlife, and creating wetlands. I am very passionate about protecting the natural world and I don't want this disease to take that away from me.

I will be forever grateful for any help you are able to provide to get me closer to my goal of receiving this surgery that will get me my life back. I will be posting updates along the way.

Thank you for taking the time to read my story. If you would like to learn more about Tarlov Cyst Disease, please take a look at the following links:

https://rarediseases.org/rare-diseases/tarlov-cysts/

tarlov cyst foundation