Perineural or Tarlov cysts

A small Tarlov cyst was recently identified on my S2 nerve root. Though small, many of my ongoing nerve pain symptoms correlate with their possible symptoms. My neurosurgeon acknowledged the possibility and is researching treatments. I possibly have other lumbosacral nerve involvement.

I found a number of past entries, most from 2018 and 2019, from members with Tarlov cysts and their treatment efforts. If you are still members, could you update us on treatments, successful and not successful, and where your journey to restore health has taken you. Thank you.

A small Tarlov cyst was recently identified on my S2 nerve root. Though small, many of my ongoing nerve pain symptoms correlate with their possible symptoms. My neurosurgeon acknowledged the possibility and is researching treatments. I possibly have other lumbosacral nerve involvement.

I found a number of past entries, most from 2018 and 2019, from members with Tarlov cysts and their treatment efforts. If you are still members, could you update us on treatments, successful and not successful, and where your journey to restore health has taken you. Thank you.

Thank you for your reply and information. It confirms what I’ve researched. I will look for Dr F’s You Tube videos. I wish you some relief.

I also was diagnosed with a Tarlov cyst at S2. My first MRI report said it was about 1.9 cm. In 2011. I had no idea what that was, and none of the doctors mentioned anything about it back then. Gradually I heard more, that it may be causing some of my low back pain. But most doctors say it’s an ‘incidental finding’, probably there since birth, things like that. I’m recovering from my second back fusion, it’s been six weeks today. I feel much better; the doctor removed hardware from the prior surgery at L4-5 and extended the fusion down L5-S1, also removing some facet joints and a disc, just cleaned up that area. It really feels better! But some pain to the lower left of this has reappeared, right where the TC is. I pray it doesn’t get worse, as that surgery has mixed results, because it’s a nerve, an aneurysm of the nerve, how do you fix that. I’ve heard only Dr. Feigenbaum in Texas and Dr. Schrot in California successfully perform this surgery, although there is one other doctor in PA I’ve heard about. I’ve read Johns Hopkins hospital has done research, looks promising. Please go online to the Tarlov Cyst website and read up on this rare condition. It’s real; although most people don’t have any symptoms, some of us do. It’s a very painful condition that no one has heard about, including most doctors, because they don’t teach it in medical school.
If you want to learn more, and talk to others with this condition, there’s a private Facebook group, do a search for it. It’s very comforting to talk with others. Some have had the surgery, others don’t but want to connect.
I wish you all the best in your search for relief!

Hi Barb,

Unfortunately, it's very rare to find a doctor that is willing to acknowledge that these cysts DO cause issues. They say Tarlov cysts are rare but I think there are lots of chronic pain patients out there who's issues are caused from them. I took a bad fall way back in 2003 and have never been able to stand up straight since. I've also had severe muscle spasms and sciatic pain. In June 2018 all of a sudden a slew of new symptoms popped up and have just snowballed! Just when I thought my condition couldn't get worse it got a whole lot worse! While reading one of my MRI reports I noticed that it said "Multiple Tarlov cysts found incidentally". I started asking all the doctors about them and there was only 1 that would admit that they cause issues and that is because she also had one and needed surgery. If it weren't for her I would still be a chronic pain patient. My PCP has sent me for so many tests trying to prove that it's not the cysts it's ridiculous! These things have wasted 15 years of my family's lives.

Funny you should mention issues with migraines, eyes, ears, walking and standing. I have all the same issues and they are all caused by these cysts. The migraines, eyes, and ears may be from a low pressure headache. My doctors are sending me to be tested for it now. I'm having a very hard time standing and walking because of the back/muscle spasms and the nerve pain going down my legs & into my feet. My legs are going numb from time to time too. I have a hard time even bending or putting pressure on my right leg and can't even sit on my right butt cheek because of the pain. Is this what you're going through too?

I was told that there are only 3 neurosurgeons in the U.S. that are known for treating these cysts. I just saw the one in Dallas,TX in January 2019 and am currently waiting for a surgery date. He is normally booked out for about 1 to 2 months for a consul and 3 to 4 months for surgery. I'm really afraid about the surgery but at the same time I can't imagine just continuing to get worse. I guess those are the choices.

There are 2 websites that have been most helpful and contain the most info. about Tarlov cysts but we are not allowed to put that info. on this site. I'm not able to give you my direct contact info. either. I don't get a whole lot of time on my laptop because of my pain but I'll try to check back here when I can. Hope I helped you a little. Take care!