Replies to Hi @cpidgeon59, welcome. I moved your question about Tarlov cysts to this existing discussion posted by…

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Spine Health | Last Active: Feb 5 8:25am | Replies (167)

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@colleenyoung

Hi @cpidgeon59, welcome. I moved your question about Tarlov cysts to this existing discussion posted by @vadaanglin
- Tarlov Cyst on the spine: Any advice? https://connect.mayoclinic.org/discussion/tarlov-cyst/

I did this so you can connect with fellow members like @bogobarb @qball2019 @klnd53 @bluej @mfratt @rkbunn @peacenlove who also have experience with Tarlov cysts. You may also be interested in these related discussions:
- Recovery after surgery for Tarlov cyst: What to expect?: https://connect.mayoclinic.org/discussion/recovery-after-surgery-for-tarlov-cyst-what-to-expect/
- Perineural or Tarlov cysts: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

Have the cysts been causing you pain? What treatment options have been suggested for you?

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Replies to "Hi @cpidgeon59, welcome. I moved your question about Tarlov cysts to this existing discussion posted by..."

paula54 | @paula54 | Feb 17, 2022

I would also like to be in on this discussion, as I have Tarlov cysts that are apparently the cause of my severe chronic lower body pain over the past six years. I can’t sit for long without pain, nor stand in one place for long (cooking and washing dishes are basically torture), and even walking occasionally gets difficult after a while. I also have restless leg type symptoms, but it’s not RLS. (No problem with pain or restlessness in my legs when I am lying in bed on my side at night, so clearly not RLS. It’s less of a problem when I take adequate iron supplements.)

I was considering going to Dallas to have an in-person consultation with Dr. F (I live on the East coast), but didn’t do so during the pandemic because I am over 65 and have asthma, so have been extremely cautious about COVID-19. I think I was trying to convince myself that the pain might be due to repressed emotions, which is actually a thing (sometimes referred to as Tension Myositis Syndrome or TMS, Mindbody Syndrome, or other such terms). But in my case the persistent chronic pain is more likely due to my Tarlov cysts, as I have tried the more psychological treatments for TMS with no success.

I probably should try to get a virtual consultation with Dr. F at this point, and may need more up-to-date scans (since my previous ones go back several years now).