My story, journey, & struggles with Tarlov Cysts

Hi, my name is Silvia I live in Georgia; that is me on the right of the picture.

Thank you for taking the time to read my story. Tarlov Cyst has changed my life. I’ve been dealing with this rare disease for the past 20 months. Pain wraps around my right hip, shooting nerve pain down the right lower back with weakness. Burning Glute, walking, standing, and sitting for any time makes my back ache worse. The pain debilitates my abilities to do everyday activities. I need back surgery. I thank GOD for the strength he has given me and the will to keep going. Thank you for your contribution and support. 

My life changed in December of 2020; I was getting ready for bed when a severe lower back pain hit me out of nowhere. I was in tears, I have a history of kidney stones, and I thought that’s what caused my pain at first. In January 2021, I experienced a second episode of severe lower right back pain. I scheduled an appointment with my Urologist. I was seen on February 10, 2021, the doctor ordered a CT scan, the results showed a small stone on my left kidney, but I felt the pain on the right side; my doctor said I might have passed a kidney stone on that side. Pain medicine was prescribed.

On the last week of February 2021, I got severe pain again; this pain was different than the times I had kidney stones. I knew something was not right. I went to Urgent Care the next day; an X-ray was ordered nothing showed up. I was diagnosed with flank pain. I was getting the pain once a month at this point.

I scheduled an appointment with my primary care physician and was seen on March 09, 2021. My PCP said I might have pulled a muscle, and since I was not sleeping well, my body was tired, and I was diagnosed with Insomnia and Anxiety. I was seen by my primary care doctor 3 times in March 2021. The pain was interfering with my sleep; I was now getting pain when walking, standing, and sitting. I would go to work feeling fatigued due to the lack of sleep and get severe pain at work. I knew I had to make decisions because my health was interfering with my work, I decided to put in my 2 weeks’ notice, thinking resting more and spending time with my granddaughters would improve my symptoms and health. I was getting the pain once a week. The days I had pain, I would sleep 3-4 hours at night and awaken by the pain. After working at the local health department for 15 years, April 7th was my last day. The pain increased, and my PCP saw me on April 12, 2021. My doctor said a sciatic nerve was causing the pain during the exam. I was referred for physical therapy and diagnosed with Sciatic Nerve on the right leg. Any movement to the right side of my lower back and leg would trigger severe pain that would cause me to stay in bed the rest of the day. Resting more and spending time with my granddaughters were going to be far from my plans.

Seeking answers May of 2021, I was seen by a Chiropractor with no improvement; symptoms were getting worse Over the counter medicine was not helping or the pain medicine I was prescribed by my Urologist.

In June and December of 2021 I ended up at the ER with repeated CT scans and X-ray and nothing. Doctors said it was my Anxiety and I needed to rest. I felt that no one was listening to me, I didn’t know what to do. I didn’t feel anxious I was feeling pain and couldn’t rest; my body was giving up. One ER doctor said ‘’ok, so what pain medicine do you want now?’’, ‘’I said none, don’t give me any I just want to know what is causing my pain’’. Like all the previous doctor visits, advised to continue my pain medicine.

2022, for me, it was starting the new year with new symptoms. Sleepless nights, pain got so bad that I could barely walk, get up and down the stairs, lift anything, not able to sit for a long time or stand. I had to reposition throughout the day. The pain spread to my abdomen, down my right leg, and my groin. I started using a cane and walker. Due to severe pain, I stopped driving, going to grocery stores, or even visiting family. Car trips are rough for me. The pain is impacting my ability to function and perform daily basic activities. I need assistance to pick up something that is so easy to pick up but for me it’s hard and painful to do any range of motion.

Two doctor visits in February 2022 same diagnosis, still no change I am getting worse. I felt at this point as I was losing hope from doctors, my quality of life had drastically changed until I was seen by Ortho-Sports and Spine Physicians on February 28, 2022. Doctor ordered an MRI, the report showed Tarlov cyst. In March 2022 I finally got the answers to the debilitating pain.

I had a follow-up in April 2022 by then, I had numbness to my right leg and would drag my leg when walking. I couldn’t feel my right leg. I was referred to the ER I went to the closest one. I explained everything and told the ER doctor about the Tarlov Cyst. They had never treated anyone with Tarlov Cyst. A new MRI was ordered, 2nd confirmation it was in fact Tarlov Cyst. I was admitted to the hospital, I was to see a Neurosurgeon. I was seen by an Orthopedic surgeon he didn’t know what to do, said no Neurosurgeon was on call. Doctor discharged me with a referral back to Orthopedic and Orthopedic surgeon. They said I was a rare case, there was nothing they can do for me. I followed up with Orthopedic surgeon, who prescribed pain medicine.     

I did my own research. Tarlov Cyst is a rare disease, as listed on NORD (National Organization of Rare Disorders). I called the organization and was given limited information about the disease they said it is very rare and was given the number to the Tarlov Cyst Foundation. I called the foundation they provided me with information with Two Neurosurgeons in the USA, One in Sacramento, California and the other in Dallas, Texas.

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

https://www.tarlovcystfoundation.org/

I decided to go with Dr. Frank Feigenbaum since he is in Dallas and closer to me, I live in Georgia. Dr. Feigenbaum treats many spinal conditions with a strong focus on Tarlov or meningeal cysts. Dr. Feigenbaum is one of only few surgeons in the world with the experience and proven good outcomes with surgery for these rare cysts.

https://www.frankfeigenbaum.com/

A Tarlov cyst is a dilation of the nerve root sheath or outer covering of the nerve. Cerebral spinal fluid gets trapped inside the nerve and forms a cyst. The fluid in the cyst can put pressure on the nerve inside and on the other nerve roots and cause debilitating symptoms. They can occur anywhere along the spine where there are nerve roots. They are most prevalent in the sacrum or base of the spine. The cyst is the nerve and, therefore cannot be cut out.

I had an appointment with Dr. Feigenbaum in Dallas Texas on May 19, 2022. The car trip was exhausting, unable to sit, my husband put the back seats of the truck up I had to go laying down for hours, it took us two days to travel. We had to make several stops due to the severe pain. During the office visit Dr. Feigenbaum confirmed the Tarlov Cyst and said that’s what’s causing the pain. One is compressing surrounding nerves. I have 6 Tarlov Cysts, 1 on the left side of the sacrum (S2) and 5 on the right side with the largest at 1.9 cm at the S2-S3 levels.

Please, keep my family in your thoughts and prayers. It’s been hard for me to ask for help. I am very independent. Unfortunately, Tarlov Cyst has taken my independence away. During all my pain, struggles and journey, I have hope. This surgery can bring my life back and allow me to return to work. I don’t have health insurance due to me leavening my job and I have used up my savings and my 401K savings account to attend to out-of-pocket medical expenses. I am asking for your support to reach my goal of $32,000.00 to at least pay for Dr. Feigenbaum.

The fees include:

Dr. Frank Feigenbaum fee is $30,000.00

Hospital fee (inpatient) fee is $10,420.00

Neuromonitoring fee is $1,500.00

Anesthesia fee is $1,000.00

Doctor-Internal Medicine fee is $200.00

 

I thank GOD for the strength he has given me and the will to keep going.
Thank you for your contribution and support.