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The few percent of us whose Tarlov cysts are symptomatic are disregarded because very few neuroradiologists have the skill set and expertise to notate on your MRI report the number of cysts, dimensions of each cyst, fluid volume of each cyst, as well as the exact location of each cyst.
A pilonidal (pie-low-NIE-dul) cyst is an unusual pocket in the skin that usually contains hair and skin debris. The cyst is almost always near the tailbone at the top of the buttocks. Pilonidal cysts usually occur when hair punctures the skin and then becomes embedded. If a pilonidal cyst becomes infected, it can be very painful.
In an effort to try to see more my doctor did a lumbar and pelvic MRI last week. Turns out I have a cyst on my spine called a perineural or Tarlov cyst. It's basically assistant starts at the nerve root and herniates out filling with spinal fluid. I guess there's like a leak from your spine to this cyst but the system itself is made up of nerves.
@anita1940 Hello Anita, Although I’m not very familiar with Tarlov cysts I know a tiny bit about them because an acquaintance of mine in England was having seizures and diagnosed with Idiopathic Epilepsy but upon further testing by another Neurologist the cysts were discovered removed and no more seizures.
I had a Tarlov cyst removed in 2018 and the pain in my sacral spine disappeared as a result. My surgeon, Dr. Schrot, with Sutter Medical Center in Sacramento is doing a study on Tarlov Cysts and I recently completed a survey for him.
I have a large tarlov cyst 2.5cm and 3.5cm on the spine in the lumbar region. Some what rare and doctors seem to know little about and say they are nonproblematic. I'm having chronic pain.
Syringomyelia (sih-ring-go-my-E-lee-uh) is the development of a fluid-filled cyst within the spinal cord. The cyst, which is sometimes called a syrinx, can grow larger over time. When it does, it can damage the spinal cord and cause pain, weakness and stiffness. Syringomyelia has several possible causes.
I have a 2.5cm tarlov cyst at S2. Finally saw a Neurosurgeon's NP in May. She did NOT recommend surgery. Her comments: cyst is in a high risk area, an enervated area, where there is a lot happening. Could result in permanent incontinence. She recommends learning if there is a "mass effect on the S3 complex", or if there is a nerve root issue.
Hello @aquafun23, welcome to Connect.That certainly sounds painful! Since this is a discussion hasn't been active recently, I'm inviting @bogobarb, @qball2019, @joken, and @summertime4 back to this conversation as they also posted about being diagnosed with a tarlov cyst.
I have done considerable research and can share a number of resources with you. I will send you those via private message. Johns Hopkins has a Tarlov Cyst Program and clinical trials. For starters, Look up The Tarlov Cyst Foundation and join the National Tarlov Cyst Facebook page where you can learn from other’s experiences.