My Tarlov Cyst Disease Journey: My Tips for the Tough Times 

Thank you again for making these videos. Your upbeat attitude and the fact that you’re continuing to make progress are both encouraging especially to someone who is just starting out on this journey. (I’m using my husband’s account here on RU-vid so I’m not really doing Jujitsu as in his profile pic). I’m meeting with Dr F in two weeks and I’m hoping he’ll ok me for surgery so that I can start on the road to recovery ASAP.

I understand I was going to write a book about my journey mine started in 07' the doctors told me not to worry about them then 5 yrs later I could barely walk I got an updated mri it showed they grew the 3 cysts around my sacrum now I have severe nerve damage. I've had 2 surgeries. I have another tarlov cyst growing in my thoracic area and still have clusters in my pelvis area. I also have connective tissue disorder Elhors Danlos syndrome 🙃 I hope this helps. I don't have a significant other; I'm not lucky enough to find a nice man; I have Jesus and my 2 grown son's. I count the little blessings in life. I hope this helps someone. I'm disabled from this disease

Trying to find a neurologist after moving and being diagnosed but no other doctor believes me or the records I have from prior neurosurgery, they still say I ‘should’ be symptom free even when I tell them I’m not and they see the cyst on current mri

Thank you So much for sharing!

I was diagnosed this last week and it’s extremely helpful to hear about your journey and have a better idea of how to navigate this. So thank you!

Hi, Please give us an update on your progress on your healing journey every so often. I also have the same problem but we do not have doctors in my country who understand that Tarlov cysts can cause pain. Also, Pls advice on how you went about getting an appointment since i contacted the Aimis doctors over a month ago but i have not gotten a response and my pain down my legs is getting to worrying levels.

How are you finding it after surgery? Has the cysts refilled again with the fluid?

Hi Katie I have a question: did your symptoms suddenly get worse after you saw the words “Tarlov Cyst” on your CT or MRI? I can’t figure out if it’s in my head or I had been stuffing down feeling what I felt before I really knew what was going on? Thank you so much for posting this particular video on the subject. It’s very validating 🥰.

What type of dr. have you seen? I went to the E.R. have had imagining done my primary says it’s small but it’s been over a year since it started and the pain is intense and my mobility is limited

I think my journey has taken me down the wrong road. My symptoms are so severe there is no relief. Sitting hurts. Standing hurts. Lying down hurts. I think I have e to get different health insurance if I am to get any real help. But that terrifies me. I may not even be able to get the medication I am getting now. I feel hopeless.

I came across your first video before surgery, and it was like you were telling my story. Thank you for your inspirational courage and resolve to share your journey. Are you on Instagram? I want to contact you; please let me know if I can reach out to you. Thank you, ~Elizabeth NYC