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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francesmharris123 | @francesmharris123 | Nov 12, 2022

I have 3 Tarlov cysts on my spine. I have consulted Dr Feiganbaum in Texas. He only works on Tarlov cysts and he is one of the 3 doctors in the us who treats them. You can read testimonials about the surgery that he does from his patients. The recovery time after the operation appears to be long. I went to a spine doctor at Emory in Atlanta and he told me it would be a bad idea to have the surgery and he could not believe any doctor would operate on them. Emory is a very large hospital and the doctors comment scared me. I took a steroid injection almost 2 weeks ago and my pain has been worse since then which doesn’t make sense. About 4 months I started having headaches and I did not know Tarlov cysts could headaches. Thanks for your response.

mayopost | @mayopost | Feb 10, 2023

Does anyone know if these cyst can form in the area after a spinal tap and blood patch?

Amanda Roe | @amandajro | Feb 10, 2023

In reply to @mayopost "Does anyone know if these cyst can form in the area after a spinal tap and..." + (show)

Hello @mayopost and welcome to Mayo Clinic Connect. That is a great question.

You will notice that I have moved your post into the following discussion which you can find here:
- Perineural or Tarlov cysts: https://connect.mayoclinic.org/discussion/perineural-or-tarlov-cysts/

From what I was able to find, shock or trauma of the spine, or exertion, can cause spinal fluid in the cysts to build up.

Recent members in the discussion such as @francesmharris123 @sarsarson and @taml may have more information to share.

Do you believe yours developed after a spinal tap?

candybeason45 | @candybeason45 | Feb 14, 2023

Hi Jennifer, I to just found out from a MRI back in November that I have a perineural/Tarlov cyst on my spine L5-S1 area. They say they are very rare & most times asymptomatic but I have A LOT of pain in my lower back where it is located. I haven't felt pain in my bottom or down my leg yet & I pray I don't. I ALWAYS get headaches that at times feel like migraines. I have been unable to find a Dr that treats these rare cyst except for one in Dallas, Tx and he does not take my insurance so that's upsetting. If it goes untreated from what I read it will cause permanent nerve damage that's not repairable. So I know exactly what u are dealing with. I don't feel so alone now knowing I'm not the only one with this rare cyst.

ga29 | @ga29 | Feb 20, 2023

In reply to @candybeason45 "Hi Jennifer, I to just found out from a MRI back in November that I have..." + (show)

Hello, I also have Tarlov or Perineural cysts in my spine, a recent MRI done at Mayo Clinic mentioned one at S2 which I knew about but also more along the cervical and T11 areas. They discount them as a cause of pain, and since I have moderate stenosis and severe facet arthropathy I don’t know, but I believe they do cause pain. There is a support group on Facebook which has a huge number of members from all over the world, if you need help with support and ways to lower the pain. I will not have the surgery, I don’t think it would help me at my age (70) as I’ve been suffering for years. There are supplements and natural treatments that are supposed to help. There’s only a few surgeons in the world that will operate, they are mentioned there! I wish you all the best in your search for relief!

mmcelman | @mmcelman | Mar 9, 2023

In reply to @michael1978 "I too have this issue and i took pain meds for 7 years but had to..." + (show)

Did you ever get surgery for your tarlov cysts?

mmcelman | @mmcelman | Mar 9, 2023

In reply to @ftrice "Hello everyone. I know some of these posts are a year or more old. But I..." + (show)

where are the list of physicians please?

docb99 | @docb99 | Mar 10, 2023

In reply to @mmcelman "where are the list of physicians please?" + (show)

I have perineurial cysts and pursued that cause for my neck pain, but was told they are too low to cause my neck pain. Here is what I found out.
There is a Tarlov Cyst organization, http://Tarlovcystfoundation.org
Someone actually answers the phone. You can send your MRI disk to a doc in Texas or in California and they will review it.

kathy5645 | @kathy5645 | Mar 15, 2023

In reply to @mmcelman "Did you ever get surgery for your tarlov cysts?" + (show)

I had surgery with doctor Frank Feigenbaum in Dallas Texas in 2013 for 5 sacral cysts. The surgery failed.
My sacral Tarlov cysts have changed my life. I was very active. Have tried PT, massage, accupuncture, I meditate, swim when I can, try to walk daily and rest often. Am going to start pain reprocessing therapy with Lin Health. I am hopeful they can help. It is an online very reputable therapy. I don’t want to go to more doctors. I have doctor PTSD.