Hi, my name is Kate. Thank you for taking the time to read my story and learn about my diagnosis of Tarlov Cyst Disease (TCD).

I have come to the realization that I cannot do this on my own. I need all the help I can get to make it to surgery and to the other side where I can heal. Please keep me and my family in your prayers as this has been a very difficult time.

Your donations will help fund air travel, hotel stay and rental car while out of state for surgery. Any pre-op and post-op care items needed, medications and overall help to lessen the blow of medical debt and help me to get back to what I love doing.

My story:

I have worked in the medical field for more than a decade as a certified nursing assistant. I provide vital support to both patients and nurses. From transporting, bathing, and feeding patients, to stocking medical supplies and documenting patient information, to obtaining vital signs, checking blood sugars, running EKG’s etc. for the nurses. During this time, I have been working towards obtaining my nursing license.

In the spring of 2023, I noticed some lower back pain that would come and go, usually after providing cares to a patient or after standing up after sitting. I was usually able to walk off the soreness and stiffness. That July, I had my first ER visit. The doctor and I both agreed that it was likely sciatica. After a couple of months, another trip to the ER and an MRI, it was determined that I have a 2-centimeter Tarlov cyst in my sacrum at the S1 level.

Tarlov Cyst Disease is a rare disease that affects nerve roots as they exit the spinal cord. Due to weak connective tissue, the outer, protective covering called the dura, balloons outward and fills with cerebral spinal fluid. While called Tarlov cysts, they aren’t a cyst at all but more of a CSF filled aneurysm that is lined with nerve roots causing severe, debilitating pain. Surgery is extremely delicate. These “cysts” cannot be removed as they are the nerve root and recovery can take years. Because it is so rare, people with this disease are often dismissed while body functions fail, and they worsen over time. Experiencing things such as paralysis, sexual dysfunction, incontinence, migraines, limited mobility, sciatic and other chronic nerve pain, and depression.

There are just a handful of specially trained doctors in the United States who have the skill to surgically treat TCD, which makes finding proper care extremely difficult. Of these specialists, 2 of them offer free phone consultations and they are ALL out of state. I have consulted with Dr. Frank Feigenbaum, one of the leading TCD specialists. Upon review of my scans, I'm told that I have not just one, but 3 Tarlov cysts. There is also significant erosion of my sacral bone.

He says that he can help me. I am a surgical candidate.

He will cut a “manhole” into my sacrum, drain off the excess CSF, suture the nerve sheath covering closed, & wrap the spinal nerve so it cannot balloon out again in that area. I have decided to move forward with surgery - in Texas.

My current symptoms include lower back pain that is worsened by any kind of movement. Difficulty with sitting as it’s painful and sometimes feels as though I’m sitting on a rock. I walk with a stiff gait, and it is hard to stand straight. I have put my nursing education on hold, and I am no longer working. I spend my days now reclining on the couch as I can no longer lay down comfortably. I use a heating pad, though it’s more of a comfort mechanism than for pain. Taking a shower is difficult, I’ve had to incorporate the use of a shower chair but even with that, I struggle. I often cry myself to sleep, I cry in my sleep.

Tarlov Cyst Disease is progressive.

My condition will continue to deteriorate without medical intervention to halt the disease progression. If left untreated, nerve root compression can cause permanent damage to the nervous system. I will be managing this condition for the rest of my life, but right now I need more than pain management. My hope is that with this surgery, I will be able to resume normal activities such as going to concerts, family vacations, getaways with friends, traveling the world and going back to school and to work - doing what I'm most passionate about.

I am eternally grateful for any help at a chance of getting my life back.

“For I know the plans I have for you” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

For more information visit the Tarlov cyst foundation