Hi, my name is Grace. I am 21 years old and have been diagnosed with a large Tarlov Cyst. It measures at 30x52x87mm and has deviated my S2, S3 and S4 nerves.

I am currently working at an architectural firm and completing my Master's. My favourite thing is to be in the outdoors - but I'm not sure if I'm going to be able to do these things for much longer without surgery.

A large Tarlov Cyst occurs when a nerve root fills up with spinal fluid which stretches out the nerve fibres inside the cyst. The stretching of the nerve fibres can cause symptoms. As the nerve root fills with more fluid it expands, which displaces and compresses the surrounding nerves. This is what causes further symptoms. The larger the cyst, the more nerves it will impact. If a symptomatic Tarlov cyst is not treated, then it can cause permanent damage to the nerves. This type of cyst is rare and can heavily impact a person's quality of life. This is different to a small asymptomatic Tarlov Cyst.

My Tarlov Cyst is causing chronic pain, spasming, loss of sensation of the pelvic region / lower back, bone deterioration of the spine around the cyst, and dysfunction of organs and muscles controlled by the affected nerves (bladder and bowel). I have had these symptoms chronically for 3 years, but I have potentially had this condition for most of my life. It is starting to affect my hips, knees, and feet. This may eventually prevent me from being able to walk. To prevent my condition from becoming more painful and from damaging more nerves, I need to undergo surgery.

Currently, there are no Neurosurgeons in Australia that specialise in Tarlov Cysts. According to the Tarlov Cyst Disease Society of Australia, as far as they are aware, there are no medical specialists within Australia who have success in the treatment of the Tarlov cysts. Some patients are being turned away or go through a process which sometimes takes many years to receive treatment. Tarlov Cyst treatment in Australia usually involves pain medication and some surgeons drain fluid from the cyst (needle aspiration) and fill the cyst with fibrin (type of glue), but this is not a permanent treatment. The fibrin breaks down over time, so cyst recurrence is common and according to Dr Feigenbaum, the leading spinal surgeon on Tarlov cysts, this can further damage the nerve fibres inside the cyst (because they are essentially sticking a needle in a spinal nerve). There is no consensus on the management of symptomatic cysts.

Dr Feigenbaum provides a permanent solution which involves carefully wrapping the nerves to prevent them from re-filling instead of using glue. As far as we know, no spinal surgeons in Australia can do the same surgery. Even if they could provide the same surgery, it is important the surgeon performs the procedure frequently because it leads to better patient outcome. Dr. Frank Feigenbaum is the leading surgeon in this field and has performed thousands of similar surgeries to mine with successful outcomes. He has never had a cyst reoccur with this method. However, he only practices in America and Cyprus.

For information on Tarlov Cysts: https://www.youtube.com/watch?v=TFEIuXkwiFk

This fund will be used to pay for the operation, travel and hospital stay. So far, the estimated price for the procedure is around $95,000 to $100,000. We will update this when it’s confirmed.

My family and I thank anyone who donates - it means the world to us. Any amount no matter how small can help us along the way. Thank you for your love and support ❤️