Niki's Battle with Tarlov Cyst Disease

Our daughter Niki is a 38 year old Artist & Musculo-skeletal Therapist who was faced with symptoms earlier in the year that caused concern leading to scans resulting in a large lesion on her spine. This lesion is a symptomatic Tarlov Cyst, a rare & debilitating disease.

We are asking for support to help our daughter with her medical & living expenses as she has been disabled & unable to work since May. After suffering for months, she was fortunate enough to undergo surgery on November 18th 2019 which was a costly procedure, but we simply had to make it happen to stop our daughter's suffering.

Post-surgery, she still has a long battle ahead with rehabilitation. At this stage she is is still suffering excruciating nerve pain as her nerves have been released from compression, but are now needing time to find a state of normality. We are unsure if any of the nerves are damaged at this stage, time will tell. Along with the nerve issues, she is now faced with a complication, a spinal fluid leak. This causes horrendous symptoms resulting her to be forced to lay flat with her legs elevated indefinitely, hoping that the leak will resolve itself, which could take up to a month. In the event it doesn't resolve itself, she will require more surgery as there is a risk of stroke or meningitis (an infection around the brain).

So this is proving to be a very challenging journey for our daughter & she has enough on her plate without having to worry about money, so we're putting it out there. We had to borrow money to make her surgery happen which in itself was a very stressful circumstance to sort out. This hasn't been easy for our daughter to accept & she was a little reluctant, but she understands that it's OK to ask for help & if we can reduce stress in her life, then that's a win!

You're now probably wondering what the heck a Tarlov Cyst is??? A Tarlov Cyst is a rare disease where the Cerebrospinal Fluid leaks down nerve root sheaths creating fluid filled cysts. They can lead to neurological disturbances, along with bone erosion depending on the state & size, which is evident in Niki's case. The seriousness of this disease, besides the present debilitating symptoms, is that it can progressively lead to permanent nerve damage, even paralysis if not treated accordingly.

Tarlov Cyst Disease is so rare that most healthcare professionals have never heard of it or understand the symptoms involved & are quick to dismiss it. Niki suffers on a daily basis with debilitating chronic pain, weakness, numbness, vertigo, headaches, neurological changes, continence issues & walking difficulties.

Only about 4% of the adult population in the world are diagnosed with a Tarlov Cyst & less than 1% experience symptoms, which is the unfortunate category that Niki falls in. Not being able to work & function normally means she has lost a lot of her independence, now relying on family & friends to help out.

There are very few Neurosurgeons worldwide that will attempt this delicate operation. Niki was fortunate enough to connect with a support group & found a Neurosurgeon here in Brisbane who has experience with Tarlov Cysts. After having consults & tests with Dr Gert Tollesson her Neurosurgeon, he proceeded with surgery on 18th November, so Niki is now in the post-surgery healing process which will be a lengthy journey.

The more we can share this on social media, not only to help Niki, it can help raise awareness of this rare disease. The suffering needs to stop & people like Niki need to be heard, acknowledged & given the appropriate urgent care.

Once again, thank you for taking the time to hear Niki's story. As a collective we can help improve her quality of life. Any contribution is greatly appreciated & we are so grateful. Giving a little can help a lot!

On that note, as our beautiful daughter would say... Keep on rockin'! ✌️