What is a Tarlov Cyst?

I am writing this in simple language and layman’s terms, to help patients and doctors better understand Tarlov Cysts and the other disease processes that can accompany them.

I am not a doctor or medical professional. I have simply had to study neurological issues since I was 21 years old when my son was brain injured. I never realized that he would be my University and my best Professor. You certainly learn and retain more for personal reasons than for a grade. At least I did. I was helped along the way by many tremendous doctors and researchers that believed in my intellect. I was also privileged to have connections to many of the leading researchers because of both my stubborn personality and my husband’s connections through his work. I have also observed literally thousands of patients over the years by helping admin support groups. Those experiences have created a sort of “laboratory in real life” of various types of patients and the treatments that they have tried.

We all share a common disease but each one is still completely unique. In my years in the groups I have had only one member that I call my “medical twin” because we are almost identical in our bodies.

Other than that, everyone else has been unique. It’s important for each one to try to understand their own situation, and develop the Protocols that work for them. Please consult with your providers. Feel free to share any information that might help you in your own fight. You are responsible for becoming your own expert of your diseases too. What is a Tarlov Cyst? A Tarlov Cyst (TC) occurs when a nerve root, branching off of your spinal cord, is filled with Cerebrospinal Fluid (CSF). Because it IS your actual nerve root, it can not be removed like other types of cysts in the body.

Many people dislike the name Tarlov Cyst because the word Cyst can cause others to diminish the possible seriousness of this condition. Many refer to it as a spinal cord aneurysm or a nerve root aneurysm, in order to clarify the condition in the minds of others. There are 2 different types of TCs, valved and non-valved, and 2 different types of patients. Those with a few TCs, typically in the sacrum, and those with TCs throughout the spine. With a non valved TC there is open communication between the spinal cord and the cyst. The CSF continuously flows between the two spaces, therefore pressure can change based on positioning, such as standing from a seated position or lying down. As one person put it, it’s like having a rock in the flow of a river that causes the fluid to divert off course. With a valved cyst, the CSF is trapped in the cyst and the pressure remains the same. There is no safe way, that I’m aware of, for a doctor to distinguish between the two types until surgery is performed. Each type will be treated differently during surgery. Sometimes, if contrast is used, they can tell if a cyst is valved, but it’s not always reliable. Having a few Tarlov Cysts in your sacrum vs. having Tarlov Cyst Disease at multiple levels of your spine. The most common presentation for TC sufferers is having one, or a few TCs in the sacral area of the spine. These can be caused by multiple factors such as an accident or injury that caused the nerves to be damaged or impact the CSF pressure in that area.

Some patients developed their TCs after procedures like epidurals in pregnancy or an epidural steroid injections (ESI) to treat back pain.

Sacral cysts can all be treated at the same time during surgery, because they are not attached directly to the main cord, but to the “tail” at the end of the cord. These patients have a much easier recovery post op and it’s an easier diagnosis.

Then there are others who have Tarlov Cyst Disease and TCs throughout the spine, at multiple or all levels. Their MRIs light up “like a Christmas Tree”! Unfortunately the higher cysts can not all be operated on at once because they are attached directly to the cord at multiple levels. Even if the patient attempted multiple surgeries, the likelihood of them reoccurring is much higher. The reason for this is that having multiple cysts means that the patient likely has a Connective Tissue Disorder (CTD) that allowed this condition to occur in the first place. Many patients have Elhers Danlos Syndrome (EDS) but there are hundreds of CTDs.

Many can be tested for with a blood test but there are many that can only be diagnosed by the symptoms of a patient. Having TCs throughout the spine would be considered such a symptom. Research is in its infancy right now, but one theory that is gaining traction is that some CTDs were likely triggered by a virus in the patient’s youth. There have been some indications that Epstein Barr Virus (EBV) could be associated, as could other viruses, but further research is needed.

EBV has been linked to other neurological diseases over the last couple of decades, such as MS. There is a theory that the EBV antibodies can hide dormant in the central nervous system (CNS) and could somehow break down certain proteins there, such as those in the myelin, causing MS, and even Connective Tissue in the Dura, which is one of the layers of the spinal cord that helps hold the CSF inside the cord. I use the example of an old water hose that’s gotten weak, after years in the sun, breaking down its fibers. When the water is turned on, the hose bulges out in the weaker spots. Sometimes the hose even leaks water through the weakened material. The leaks can be major, spraying water everywhere, but sometimes the water just slowly seeps through the weakened, porous material.

You can push the water back into the hose and wrap the area with duct tape, but because the whole hose is weak, the likelihood of a new bulge popping out is very high.

This is likely what happens in the spinal cords of individuals that have multiple TCs throughout. The nerve roots bulge out with CSF, where the tissue is weakest. You can operate on them, and wrap them, one at a time, but the likelihood of a new one popping up is high. There can be other comorbidities in these patients too. Things like High CSF pressure (IIH), and CSF leaks in the weakest areas of tissue, Adhesive Arachnoiditis (AA), and even obscure symptoms that affect the organs that these nerve roots affect. For example, a patient may present with symptoms of a heart attack, but after thorough examination, the patient’s heart is fine. They may continue to have their “heart attack” symptoms without any understanding that it’s coming from the nerve root, sending wrong signals to the brain. This is called Cervical Angina and is usually caused by a pinched nerve, but since many doctors aren’t educated about TCs, they fail to see the connection. Any organ that is effected by the nerve root where the TC is located can cause symptoms. This is where a good dermatome Chart can come in handy.

Patients can feel like they have a UTI, yet none exists. They can feel like they’re having a stroke, where their face goes numb for a while, yet their arteries are fine. They can go from “ologist” to “ologist” for years before figuring out their true diagnosis, if it’s ever figured out at all. It IS important for those organs to be tested, in the event that it IS actually the organ but when all testing is clear, and they know that the organ isn’t the source, it’s good to know that the patient is actually experiencing symptoms and it isn’t made up or “in their heads”. There is hope for treatments, for both types of TC patient. Both surgical options for those with only a few TCs, and then there are non surgical options for those who aren’t ready for surgery or can’t have surgery for all of their cysts. My hope is that the medical community will continue to be educated about this disease because there are so many patients walking around with this disease, and it’s symptoms, that have wasted time and money as their disease progresses. They have had their physical suffering compounded by the mental suffering of being Gaslit and ignored. Many have lost their loved ones too, because if the doctor says “you’re fine! There’s nothing wrong with your ___.” why should their family believe them? Especially when it lasts for years. It’s devastating to so many people and families and it’s not necessary! The research has proven that they can be symptomatic. Unfortunately, many doctors only recognize them after they’ve become catastrophic and permanent damage had been done. Early recognition and some simple treatments could prevent them from becoming catastrophic! It could give people hope and recognition. I know that when I finally figured out what was wrong with me, on my own, I was NOT scared. I was overjoyed! I was vindicated! I wasn’t faking it or losing my mind! The next part of the journey, to educate myself and my providers, was difficult, and still can be, but it was nothing compared to the decades of not knowing why, and having doctors dismiss me and Gaslight me.