1. < Spine Health

Perineural or Tarlov cysts

Posted by jenapower @jenapower, May 23, 2017

Hi, my name is Jennifer. I have commented on here before but I've never started a post. I have been told that I have fibromyalgia for a long time, I also have had a number of accidents with many broken bones and surgeries to put things back together. All of this has resulted in chronic pain, most of it is down my head/back/pelvis/spine and legs. 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. It's the best of my understanding at this point. Mine is at the S2 location, and can cause pain from your back down your bottom and down your legs and includes some pretty severe headaches because it's upsetting the pressure of the spinal fluid around the brain. Again this is the best of my understanding of what I've been told. It certainly explains a lot of my symptoms that have been contributed to fibromyalgia and broken bones. Again they're not really sure what causes them but they think trauma in that area could be a contributor. I just wondered if anyone else had heard of this or experienced it. It is considered rare, i've come to find out there are only two doctors in the United States to do surgery on it. One of them that's all he does and he actually goes to other countries to help people that don't have access to a doctor that is experienced in this surgery. It's a long recovery and pretty scary surgery because they're messing with your new or nerve root I don't want to think about what the bad consequences could be although I know I have to. I think I've gotten to a point where I'm pretty much flat on my back every day and it's no life, so I'm actually happy to have an answer. If anybody else knows anything about this I would love to hear it or has any experience with the surgery.
Thank you, Jennifer

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kathy5645 | @kathy5645 | Mar 15, 2023
In reply to @mmcelman "I am so sorry to hear this. I am on the fence about getting mine done..." + (show)
@mmcelman

I am so sorry to hear this. I am on the fence about getting mine done locally here in Canada. It's a 50/50 thing.

Did any of the symptoms go away for you?

Jump to this post

Unfortunately no. I was so hopeful. I was also desperate. When we looked at my mri is showed my sacral nerves being pressured by the cysts. But that being said we are all different.

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tkdesign | @tkdesign | May 27, 2023

These cysts are so poorly understood and rarely treated by neurologists. Some don't cause symptoms, and some cause very severe symptoms. I've lived in pain with them for over 10 years, developing after an injury, and the weakening of your body can lead to other problems down the line. Physical therapy just made me worse, pain meds only cover up the issue. There are only 3 doctors I've heard of in the US that will treat surgically. ..one in CA, MD and Texas. I would go to Dr. Feigenbaum's website to see if he could help. https://www.frankfeigenbaum.com
There is a facebook group you can join to learn from other patients too, some great information there.
https://www.facebook.com/groups/177278615650460
Tarlov Cyst International Research and Support

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westcom | @westcom | Sep 1, 2023

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.

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2 replies
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Sep 1, 2023
In reply to @westcom "A small Tarlov cyst was recently identified on my S2 nerve root. Though small, many of..." + (show)
@westcom

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.

Jump to this post

@westcom Here are a couple other discussions where members are talking about treatment for Tarlov Cysts where you may be able to Connect with others.

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/

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Amanda Roe | @amandajro | Sep 1, 2023
In reply to @westcom "A small Tarlov cyst was recently identified on my S2 nerve root. Though small, many of..." + (show)
@westcom

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.

Jump to this post

Hello @westcom. I wanted to bring you into one of those existing discussions on Tarlov Cysts so you will notice that I have moved your post here:
- Perineural or Tarlov cysts: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

I did this to allow you to more easily connect with members who have previously shared their experiences and learn any updates. Members such as @tkdesign @kathy5645 @mmcelman @docb99 and @ga29 may be able to come back and share more.

When do you plan to consult on treatment options with your neurosurgeon?

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westcom | @westcom | Sep 1, 2023

Thank you; I have read some of the prior posts but most are not current. Hence why I wanted to reach out for any current updates. I will be consulting with my neurosurgeon soon along with gynecologist and pain management doctor.

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tkdesign | @tkdesign | Sep 2, 2023

There are only a few doctors that treat TCs surgically in the US. Dr Feigenbaum in Texas and Dr. Schott in CA take Medicare I believe if you're on disability. Dr. F will do a free consult by phone if you send him your MRI and fill out some questionnaires. I've delayed having mine treated due to having so many other health issues. The surgery has a long recovery period and outcomes are mixed. I've lived with TCs for over 10 years, and can feel for you. It's no fun and it's so frustrating how most neurosurgeons, neurologists, orthopedic surgeons have no clue what to do or what pain these cysts can cause. Dr. F has videos to take a peak at on YouTube also.

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westcom | @westcom | Sep 2, 2023

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.

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1 reply
ga29 | @ga29 | Sep 4, 2023
In reply to @westcom "Thank you for your reply and information. It confirms what I’ve researched. I will look for..." + (show)
@westcom

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.

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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!

REPLY
1 reply
westcom | @westcom | Sep 4, 2023
In reply to @ga29 "I also was diagnosed with a Tarlov cyst at S2. My first MRI report said it..." + (show)
@ga29

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!

Jump to this post

GA 29: Thank you for your update. It was helpful to me and I’m sure others. I wish you a speedy recovery and better health.

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