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

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?

Jennifer, My name is Maxine, I have lived in chronic pain for many years so it is a day to day thing. But then I read your letter about the cysts and all the trauma involved and once again I should never complain again. I am going to pray for you as soon as I disconnect. keep up your good attitude; also do you have pain and if so is it kept under control? I am a retired nurse and this is all new to me. Please reply if you would like!

Liked by ladytakash

@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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Thank you for your reply I really appreciate it. First the question you asked about other treatments, yes my pain management doctor is going to try just an epidural in that area on Tuesday. I think it’s for relief of the pain but it’s also diagnostic to see if for sure that’s what’s causing my problem. I could go on doing that for a certain period of time but I don’t think it’s in definite. I think you have to look at surgery if it keeps coming back because from what I’ve read the bones will start to deteriorate, I don’t know.

As it is a cyst that starts from the spinal nerve root. Mine is on my S1-2S. I’m not sure if it means that both of them are involved, or I have two one on each vertebrae. I don’t believe there’s a disk that far down, so I don’t know if the cyst can be between them both. Sure about any of this I’m a little confused although I’ve talked to a lot of people it is a rare condition. From my understanding there’s just the one doctor in Texas who is the expert on the cysts.

@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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Colleen thank you for the reply. There are other options besides surgery, one of them is an epidural in that area which I’m going to try on Tuesday. If it relieves the pain then we know that that’s the problem. And if the pain returns after the epidural wears off there’s only two options surgery, or they have a treatment where they inject some type of fibrous glue into the cyst to plug the hole that goes into the spinal column so you don’t develop a spinal fluid leak. None of them sound very fun to me. So were starting with the least invasive maybe it will hold me over for a while. I have also read that the bones will deteriorate in that area if you don’t take care of the problem. I really don’t know what time means.

Thank you for the websites I will definitely look into them. I appreciate any information I can find on what I’m dealing with. Thank you Jennifer

Thank you so much for the reply and your prayers. I think we all feel like the other peoples problems are worse than our own, I don’t think that’s true. Whatever you’re dealing with is your burden and you have to deal with it the best way you can. I feel worse for my family than for me, they don’t have the wife and mother they are used to have. But I keep looking for answers and I hope someday God delivers those answers. Thank you so much for your reply it means a lot. It gets a little lonely sitting here doing nothing but watching TV and crocheting. I do try to stay positive but it’s not always possible. Sometimes it really gets to me, but not today.
Thank you, Jennifer

@jenapower

Thank you so much for the reply and your prayers. I think we all feel like the other peoples problems are worse than our own, I don’t think that’s true. Whatever you’re dealing with is your burden and you have to deal with it the best way you can. I feel worse for my family than for me, they don’t have the wife and mother they are used to have. But I keep looking for answers and I hope someday God delivers those answers. Thank you so much for your reply it means a lot. It gets a little lonely sitting here doing nothing but watching TV and crocheting. I do try to stay positive but it’s not always possible. Sometimes it really gets to me, but not today.
Thank you, Jennifer

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Maxine I didn’t answer your last question sorry. Yes I’m in a lot of pain, it’s hard to walk and I am laying down most of the time. I’m on a lot of pain medication and it does help but I think as most people on this list know, it never takes it all away, you just have to learn to live with what’s left. It seems since this cyst it is filled with spinal fluid, it causes an in balance in the pressure and it makes my pre-existing migraines worse.
Most of the time things are tolerable I just can’t run around and do things. If I’m laying down I’m happy chatting with my family and crocheting or watching television. Once in a while the headaches get so bad I have to go to urgent care but otherwise I can tolerate it. Again thank you for askIng.
Jen

I too have this issue and i took pain meds for 7 years but had to fight to get an mri which was finally done in jan of 2016 but due to the pain med epidemic going on i choose to stop taking the meds and winged off in oct of 2017 and im here to say my life is a living hell. I do try everyday i go to the gym but i can only do so much and when im using machines i can feel my spine move its so weird. Now as we all know some days are better than others and i never have a full day of ok its a hit and miss. Some times i stand up and fall over cause my legs dont wanna work it sucks so bad. I use to drive a truck locally hauling grain and my legs would hurt so bad that i could barely move,if im on my feet to long standing up my back will hurt so bad i fall down and cry loudly its sad when your wife and kids look at who use to be their superman is crying on the floor with doctors acting like they dont care cause i lost my insurance and now get treated like garbage. My head is even messed up i dont know if its all related but i would love to know cause i cant think straight i fumble my words i lose track of what im saying in the middle talking,i fall into walls alot but other times i feel ok its so weird. I use to be full of energy busy all day long and now just a trip to walmart can wipe me out for the day. I spend most of my time in my bed as the recliner hurts most times,i cant lay on my stomach as it kills my back in ways i cant describe. So much i wanna say but im not a good at typing and its hard to focus. I need answers i need to be a father and husband again so if you have any info on where to look im all ears. My doc is a great doc he is new to me but without good insurance im not being taking seriously. I have my mri images and report and still get no where its sad and im lost as to what to do.

Hello everyone. I know some of these posts are a year or more old. But I thought I would post with some resources that I've found helpful over the last 6 weeks since my teenage daughter's MRI showed a Tarlov cyst at her S2, which seems to be causing nagging pain only at this point. Please ask to join a private Facebook group called the Tarlov Cyst Society of America. There are others, but this one in my humble opinion, is the most helpful. Don't delay. Join and start reading. The moderators are active in updating their files. There are articles. But most importantly, there are people who are living with this condition who have tried many things, some successfully and some not. I hope you find it as helpful as I do. You will find a list of physicians by state on this site as well.

@ftrice

Hello everyone. I know some of these posts are a year or more old. But I thought I would post with some resources that I've found helpful over the last 6 weeks since my teenage daughter's MRI showed a Tarlov cyst at her S2, which seems to be causing nagging pain only at this point. Please ask to join a private Facebook group called the Tarlov Cyst Society of America. There are others, but this one in my humble opinion, is the most helpful. Don't delay. Join and start reading. The moderators are active in updating their files. There are articles. But most importantly, there are people who are living with this condition who have tried many things, some successfully and some not. I hope you find it as helpful as I do. You will find a list of physicians by state on this site as well.

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Hello @ftrice, welcome to Connect. Thank you for sharing some additional information with the members of this discussion. Would you mind sharing with the group what brought you to Connect and what sort of resources you have been able to share with your daughter to help in her diagnosis?

Hi. I was recently diagnosed with two small to moderate Tarlov cysts. My question is specific. So far I have been asymptomatic. A scan in 2014 showed no TCs. If now, 4 years later, I have two, does this mean that I may be one of lucky ones to remain symptom free? I don't know exactly when the cyst began, or how fast it has grown. I just know that my cysts developed some time in the last 2-4 years. I'm interested in understanding more about how fast they grow and when/if symptoms present most often. I don't have any idea where on the spectrum I fall, so I'm looking for context. Thank you kindly. Linda

Hi all of you. I see that these posts are all from 2017 to 2018, but I wondered how all of you are doing, and if you've been able to get any help. I'm sort of new to the world of Tarlov Cysts, although I've had symptoms for many years, but my doctors kept telling me the TC's all along my spine on my MRI's were nothing to be concerned about. So, now that I have trouble walking and standing (in addition to the back pain, migraines, eye and ear problems, etc.) I'm out there on my own struggling to get help. I wonder how you all are doing, and if you have found anything that helps. Best to everyone; appreciate any reply.

@bogobarb

Hi all of you. I see that these posts are all from 2017 to 2018, but I wondered how all of you are doing, and if you've been able to get any help. I'm sort of new to the world of Tarlov Cysts, although I've had symptoms for many years, but my doctors kept telling me the TC's all along my spine on my MRI's were nothing to be concerned about. So, now that I have trouble walking and standing (in addition to the back pain, migraines, eye and ear problems, etc.) I'm out there on my own struggling to get help. I wonder how you all are doing, and if you have found anything that helps. Best to everyone; appreciate any reply.

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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!

@bogobarb

Hi all of you. I see that these posts are all from 2017 to 2018, but I wondered how all of you are doing, and if you've been able to get any help. I'm sort of new to the world of Tarlov Cysts, although I've had symptoms for many years, but my doctors kept telling me the TC's all along my spine on my MRI's were nothing to be concerned about. So, now that I have trouble walking and standing (in addition to the back pain, migraines, eye and ear problems, etc.) I'm out there on my own struggling to get help. I wonder how you all are doing, and if you have found anything that helps. Best to everyone; appreciate any reply.

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Sorry for the extra reply but…

Do you also have issues with your bladder or bowels? I have had issues with my bladder since 2003 and lost control of my bowels in June of last year. These are both symptoms of cauda equina syndrome. It's normally an emergency for other people but if it's because of Tarlov cysts it won't be unless the doctor you have will admit that the cysts cause issues. It's really a terrible shame because there can be some serious nerve damaged caused by waiting.

I also forgot to mention that my cysts have shown up on my MRI & CT scans all the way back to 2003. Nothing was ever mentioned to me about them until last year! Also, there were only 3 cysts noted in my report but the neurosurgeon found 5 or 6 (he won't know how many for sure until he's in there) and a fatty filium. The fatty filium is also called a tethered cord which normally happens at birth but can also happen with an injury. Mine happened with the injury. Interesting thing is that he said when he releases the tethered cord it may or may not release the pain in my back. The tethered cord has never been mentioned before either so I was surprised by that one. Must be another "incidental finding". I'm finding that there are lots of those.

@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?

Jump to this post

I think the best site for Tarlov cysts, also known as perineural cysts is The Tarlov Cyst Foundation (not to be confused with the association mentioned in another post)

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