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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francesmharris123 | @francesmharris123 | Jul 10, 2022
In reply to @qball2019 "@anita1940 There are quite a few people on the Facebcook group Tarlov Cyst Society that share..." + (show)
@qball2019

@anita1940

There are quite a few people on the Facebcook group Tarlov Cyst Society that share their surgery experiences. I was even more afraid after reading what other people said but there were plenty of people with positive experiences as well. What you need to keep in mind is that everyone is "wired" differently so the extent of the success of the surgery is individualized. No two outcomes will be the same. There are various factors to consider as well such as how long you have had symptoms and how extensive your nerve damage is prior to surgery. Also whether you do your post surgery exercises like you're supposed to. These are just a couple of the factors. Just like with any surgery that involves the spine and nerves, the outcome varies. I don't think it's fair for those that had negative experiences to blame the surgeon because there is no guarantee and this is talked about extensively prior to surgery.I went to see Dr. Feigenbaum and I asked which technique is the best, titanium or mesh. He said the decision on which to use depends on the anatomy of the cysts, locations, etc. For me, my decision is based on my own opinion of risk vs reward. I am currently basically bedridden because I can't stand, walk, or sit for more than a few minutes and I can't sit on my right butt cheek at all. I'm stuck just laying down 95% of the time. I have numerous other symptoms as well. I can't imagine things getting worse for me so I am choosing surgery but have been fighting with my insurance co. to approve it. You just need to do your own assessment and weigh it all out. Don't let someone else's negative experience interfere with your decision. I hope this helps you a little bit. Take care!

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How did you like Dr. Feigenbaum? He is the only doctor I have found who specializes in Tarlov cysts. Did you find out early on you had Tarlov Cysts? My GYN thought the pain was due to Vulvodynia until I saw him the end of May. He was frustrated because nothing in the past 4 years had helped. Finally he said the pain must be coming from the 2 Tarlov Cysts. I am sending my last MRI etc to Dr. Feigenbaum on Monday and set up an appointment. I have been to so many doctors at this point I hope he is good and can get rid of the cysts. I had a consult with a interventional radiologist referred to me by my GYN and he told me he could try to drain it but he may not succeed because the cysts are close to my sacral sack. Where were your Tarlov Cysts? I have heard sometimes the procedure doesn’t work. I am very healthy other than the cysts. I used to exercise every day until I got theses cysts. They hurt most of the time. The pain gets worse as the day moves on. Thanks for answering my message.

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francesmharris123 | @francesmharris123 | Jul 10, 2022

I am about to call Dr. Feigenbaum in Texas. I have had pain in my female parts so my GYN diagnosed me with Vulvodynia. Finally the end of May since nothing has worked in 4 years he said the 2 Tarlov Cysts in the MRI must be the cause of your pain. He referred me to a doctor in my hometown Atlanta but the doctor said he could try to drain them with a needle but he may not be able to get to them because of my sacral sac. I thought many times these cysts grow on your sacrum. Since Dr. Feigenbaum specializes in removing Tarlov Cysts he can surgically drain them. He is in Texas.

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francesmharris123 | @francesmharris123 | Jul 10, 2022
In reply to @rkbunn "Hi Jennifer. I realize this is an old post. I too Have Tarlov Cyst at S2..." + (show)
@rkbunn

Hi Jennifer. I realize this is an old post. I too Have Tarlov Cyst at S2 and S3. Have you had surgery yet? I am Awaiting consult with Dr F out of Dallas. I dont Think anyone at Mayo truly acknowledges them as symptomatic or operates on them. I have Ruled out every possible thing leaving only the Tarlov Cyst. The vaginal pain is debilitating.

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I have not been looking at Mayo for a while. After 4 years and many doctors I have just found out it must be the 2 Tarlov Cysts that is causing my vulva and vaginal pain. Thanks for letting me know you have debilitating vaginal pain. When I read about Tarlov Cysts I have not heard that they caused vaginal pain. Your response has helped. I have an MRI etc to send to Dr. Feigenbaum in Texas on Monday. I have heard that many times the operation to remove the Tarlov Cysts
works and the pain goes away. I have been to about 8 doctors in 4 years and finally the GYN who I have been going to for years changed his diagnosis from Vulvodynia to Tarlov cysts.
I hope that Dr. Feigenbaum in Texas can help.

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1 reply
msmess | @msmess | Oct 23, 2022
In reply to @colleenyoung "Hi Jennifer, Apologies for the delayed response to your post. It sounds like you've gathered a..." + (show)
@colleenyoung

Hi Jennifer,
Apologies for the delayed response to your post. It sounds like you've gathered a fair bit of information about Tarlov cysts. Here is the info sheet from NORD (National Organization for Rare Diseases) https://rarediseases.org/rare-diseases/tarlov-cysts/ It's one of my go-to websites for rare conditions.
Have any other treatment options been considered besides surgery?

I'm tagging a few members to bring them into this discussion. @ashleykingsley talked about Tarlov cysts quite a few years ago on Connect. I'm hoping she still receives notifications and will return to the discussion to share with you.

@pkindron, you mention a sheath tumor on the nerve root on your spine. Does your experience some similar to Jennifer's?

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Hi I am MSMESS... I have several 4 or more perineural cysts on L1-5 and one of them inside my tailbone. I have done PT on and off for 20+ years. I also have degenertion of spine. I have also had numerous cortisone injctions mostly at L1 and L3. Just before COVID I had a caudal block and that was the best improvement of symptoms for 3 months or so. Surgery has been discussed by 2 neuros I saw, but to be told it would not make me worse but could not give me an estimate of how much improvment I may see, I decided against it. The ortho that did my caudal told a n intern that was shadowing him that the spinal fluid within cyst could make things worse if ruptured, but neuro said the cysts were not a concrn and NEVER cause symptoms. I have read that and read they are now finding some become symptomatic. Not sure what to think about surgery for degerated discs along with these cysts.

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1 reply
bustrbrwn22 | @bustrbrwn22 | Oct 23, 2022
In reply to @francesmharris123 "I have not been looking at Mayo for a while. After 4 years and many doctors..." + (show)
@francesmharris123

I have not been looking at Mayo for a while. After 4 years and many doctors I have just found out it must be the 2 Tarlov Cysts that is causing my vulva and vaginal pain. Thanks for letting me know you have debilitating vaginal pain. When I read about Tarlov Cysts I have not heard that they caused vaginal pain. Your response has helped. I have an MRI etc to send to Dr. Feigenbaum in Texas on Monday. I have heard that many times the operation to remove the Tarlov Cysts
works and the pain goes away. I have been to about 8 doctors in 4 years and finally the GYN who I have been going to for years changed his diagnosis from Vulvodynia to Tarlov cysts.
I hope that Dr. Feigenbaum in Texas can help.

Jump to this post

Hi @francesmharris123 Do you have any updates for what is happening with your Tarlov cysts? My primary doctor consulted with the neurosurgeon in her medical group and denied my request for a new MRI and let me know that per the neurosurgeon Tarlov cysts are asymptomatic. I am researching another way to get a current MRI sent to Dr F in Texas to see if he thinks my cyst could be causing my sciatica and interstitial cystitis pain. They both started in October of 2014. I am so interested in others’ journeys with this condition. Thanks!

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1 reply
Amanda Roe | @amandajro | Oct 23, 2022
In reply to @msmess "Hi I am MSMESS... I have several 4 or more perineural cysts on L1-5 and one..." + (show)
@msmess

Hi I am MSMESS... I have several 4 or more perineural cysts on L1-5 and one of them inside my tailbone. I have done PT on and off for 20+ years. I also have degenertion of spine. I have also had numerous cortisone injctions mostly at L1 and L3. Just before COVID I had a caudal block and that was the best improvement of symptoms for 3 months or so. Surgery has been discussed by 2 neuros I saw, but to be told it would not make me worse but could not give me an estimate of how much improvment I may see, I decided against it. The ortho that did my caudal told a n intern that was shadowing him that the spinal fluid within cyst could make things worse if ruptured, but neuro said the cysts were not a concrn and NEVER cause symptoms. I have read that and read they are now finding some become symptomatic. Not sure what to think about surgery for degerated discs along with these cysts.

Jump to this post

Hello @msmess and welcome to Mayo Clinic Connect. Do you think that since the cysts are not symptomatic and you had a good outcome with the caudal block, that it could maybe work again for you prior to considering surgery based on what you've shared?

I would also like to bring in members @bustrbrwn22 @nleejewell and @taml who have shared in this discussion previously to see if they may have some experiences to share.

I am curious what the ortho's recommendation was for block vs. surgery?

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msmess | @msmess | Oct 24, 2022

My ortho suggested the block but has moved out of state. Yes I am considering going to aaaanother person in the ortho group to see if they think another caudal will help. The thing is it did help, but it is not a cure and at my age not sure if I want to go with surgery and hopefully get longer relief.

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francesmharris123 | @francesmharris123 | Oct 25, 2022
In reply to @bustrbrwn22 "Hi @francesmharris123 Do you have any updates for what is happening with your Tarlov cysts? My..." + (show)
@bustrbrwn22

Hi @francesmharris123 Do you have any updates for what is happening with your Tarlov cysts? My primary doctor consulted with the neurosurgeon in her medical group and denied my request for a new MRI and let me know that per the neurosurgeon Tarlov cysts are asymptomatic. I am researching another way to get a current MRI sent to Dr F in Texas to see if he thinks my cyst could be causing my sciatica and interstitial cystitis pain. They both started in October of 2014. I am so interested in others’ journeys with this condition. Thanks!

Jump to this post

Please keep trying to get an MRI. Dr. F requested for me to have a pain dr numb the area close to my cyst which proved the pain was coming from my cysts. I am going to try a steroid injection to see if that helps before I do the surgery since I am older age 72

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taml | @taml | Nov 2, 2022

Hi. I posted before about Tarlov Cysts. I just watched a video by Dr Rudolph J. Schrot. Called ICD10 Coordination and Maintenance Committee Meeting Aug 31,2020.
Very interesting. Found - 80 0/0 are women, which could be the main problem why they're ignored?. Quoted the # of people cysts found. But noted that a lot are not reported when found on MRIs. My doctor didn't mention mine. I just happened to read info from my MRI report that mentioned it. Asked my doctor. Told .... They are inconsequential, found on MRIs when looking for other problems ( DA- low back pain),and don't cause pain! They are just part of your spine. Still see only 2 doctors that address and admit they can cause huge problems, pain, and spinal deterioration. Why?????
Tried searching Tarlov cysts at mayoclinic.org and nothing. Huge clinic, huge reputation, have access to all of THESE posts, and even THEY choose to ignore it..
maybe the 80 0/0 women is the answer?
I so appreciate the few people who report any improvement and answers they have found.
I too have found exercise makes it worse. So sad!
Thank you for listening.

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sarsarson | @sarsarson | Nov 3, 2022

Hi, Taml. I went through the same initially. Not even a mention of the TC finding that was listed on my MRI report. Over the course of 9-years, and an unnecessary surgery, i sorted it out mostly on my own. I’m attaching an article that discusses the various reasons why TC’s are often overlooked by the medical professionals in our lives. It is from 2017 but still holding true. I’ve heard from others that Mayo is not a good in-person resource. Dr. Schrot, Dr. Feigenbaum and Dr. Welsch (at Penn Medicine) will all do consults with you to help sort out whether the TCs are the cause of your pain.

Shared files

Hulens et al (2017) (Hulens-et-al-2017.pdf)

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