I’m a 5 TC nerve root repair recipient. It’s been a brutal 3 years . Don’t ever give up and keep pushing for answers. Today is actually the best I’ve felt for a long time. Nice coincidence. Don’t forget about your TCD brothers🤗🤗

So happy to see someone started a support/awareness group!!!

I’d really like to know more resources if you can create a place on your website with guidance on that. Things like how and where to get diagnosed. How does one know they’ve got this? How can I explain to my doctor how to look or and test for this? I’ve had to do all the research on my condition and bring it to my doctor. I’ve had to thoroughly explain to her how to order special X-rays. I’ve had to educate HER. Begged for MRI’s only to have them not show that area of my spine! Frustrating. She was willing to help if I could find answers, but now I’ve given up on her and changed doctors, but I feel like I’m starting from scratch, having to try to educate someone new all over again. I’m so tired of trying to explain this pain. They don’t believe me because of their own ignorance on this part of the body. I’ve been searching for YEARS for answers to my life-altering pain. Doctors dismiss me. I’ve found many possibilities, but tarlov cysts keep showing up in my searches, with symptoms that fit to a T. I truly believe this is at least part of my problem. I can’t sit. I can’t lay down. ..what kind of life is this. But I refuse to give in and let this thing - this chronic pain - entirely rule my life. Thank you for what you’re doing. I discovered you last night and shared on Mastodon. Please don’t overlook that social media platform as it’s a very active place! To all of you other warriors: Power on! 👊

Please help me! I have been suffering for years, I’m a nurse based on my leg weakness, blurry vision etc… I finally got my neurologist to order an MRI I have one visible perineural cyst on my T1 no imaging of my sacral area where most of my pain originates, my problem is my neurologist doesn’t believe TCD can case symptoms!? 😮 I’m angry she won’t do further testing or order an MRI of sacroiliac area… I’m so depressed TCD has impacted every aspect of my life… actually what life? I have none… I’m having bad thoughts of not wanting to go o like this 😢 how do I find a support group

Hello Katie, I followed your online video about your tarlov cyst journey from beginning to recovery. You are an amazing lady with such a vibrant personality. I have tarlov cyst and searched online for information. My symptoms are right hip and leg uncomfortableness, feeling my right leg is so stiff and heavy after walking, but I can manage to walk 3-5 miles everyday. I saw you said you still have new symptoms, are you getting better now on your shoulder and arm? I hope so. I am so nervous about surgery and just wanted to know how much better you feel now compared with before, and how long after surgery you felt better. Thank you for sharing. Pearl