Help Jason Overcome Tarlov Cyst Disease

My name is Jason Mamakos, and last year I was diagnosed with Tarlov Cyst (TC) disease.

Looking at me, you probably would not know there is anything wrong. It's rare that TCs become a problem, but when they do, you face chronic nerve pain and permanent damage to the spinal nerve root. In the worst cases, everything south of the nerve pathway ceases to work, leading to loss of bowels and bladder control.

TCs cause a wide array of problems. Neurologists are taught they are just a normal variation, which is causing great delays in diagnosis. But thanks to social media, there's a community of people who have linked up to help each other understand and and find treatment for this rare disease. It's only about 1 in 40,000 that become symptomatic. In fact, Tarlov Cyst is so overlooked that there are only two neurosurgeons in the US who treat this condition.

For the last seven years, I've worked as a Distiller and Assistant Winemaker — a truly rewarding job with a lot of manual labor and long hours. At the beginning of this year, I was able to keep working and power through the pain, with the plan to wait for surgery after this fall’s grape harvest.

However, in March the pain got so bad, it felt like a blowtorch on my sacrum. I was losing feeling in my legs and not able to bear weight, so I was forced to leave work on disability and schedule the surgery sooner.

In April, one of the nerve pain medications I was prescribed (Cymbalta — an antidepressant with a secondary use for pain) triggered a manic episode. I was seven years removed from a previous mental health crisis (when I received the troubling news of my Bipolar disorder).

The mania set my surgery back, again, and left me to pick up the pieces of my life after an 18-day inpatient stay at a psych ward. Luckily, the doctor at the ward prescribed hydrocodone, which helped immensely with the pain. Finding a local pain management doctor to do the same had not been possible, in spite of me crying in pain while on crutches in the waiting room. My primary care physician has been wonderful and is helping me through this journey, including taking my pain seriously enough to prescribe opioids while I wait.

Multiple ER visits and a stay in the psych ward are only a few of the financial burdens I had not planned for. Since the surgery has been delayed, my work is changing my status to inactive and I am losing my work-subsidized health insurance.

Today, I live on our family farm, which we all share to maintain. I miss my mental and physical stability, as well as providing for my family, our farm, and our animals who I love dearly.

This is a major surgery and a major decision, but I know it's the only way forward. I won't be able to bend, lift anything over 5 pounds, or twist for 3 months after surgery. Recovery can sometimes take more than a year. However, my doctor has faith that my post-surgery prognosis is good.

I will post my progress through this journey, and continue to spread awareness about this misdiagnosed and often completely missed disease.

The complexity of this surgery will be determined when the doctor goes in. The MRI confirmed bi-lateral cysts at S2, but each case is unique. However, with all the information we have now, we know as a family that this surgery is going to cost a minimum of $50,000.

Thank you for your support,

Jason Mamakos (and Piggie Boi, my pet pig)

06-11-24 *Update:

I have reached the end of my protected period via the paid family leave act and have been terminated from my job. I will lose my benefits just 18 days before the surgery date. Today I will look into my other insurance options. COBRA will cost $600 monthly. I hope to keep my primary care, shoutout Dr Jessica Peckham has been world class. The pain management doctor situation has been very very hard. They won't prescribe hydrocodone for my pain because I am "young". So today I will look for a new one as well.