Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Tarlov Cyst

What is Tarlov Cyst?

The spinal cord is a part of the nervous system that extends down the vertebral column. The spinal cord is divided into thirty one segments. From each segment, two sets of nerves emerge that are responsible for relaying sensory and motor information to specific areas of the body. Tarlov cysts are fluid-filled cysts that form at nerve roots where the nerves leave the spinal cord. These cysts typically form at the base of the spine, the area known as the sacral level. A key distinguishing feature of Tarlov cysts is the presence of spinal nerve root fibers inside the cyst cavity or the wall of the cyst. Depending on the size of the cyst, it may be symptomatic or asymptomatic. The larger the cyst, the more likely it is to be symptomatic.



  • Perineural cysts
  • Sacral, lumbar, thoracic or cervical nerve root cysts

The spinal cord is a part of the nervous system that extends down the vertebral column. The spinal cord is divided into thirty one segments. From each segment, two sets of nerves emerge that are responsible for relaying sensory and motor information to specific areas of the body. Tarlov cysts are fluid-filled cysts that form at nerve roots where the nerves leave the spinal cord. These cysts typically form at the base of the spine, the area known as the sacral level. A key distinguishing feature of Tarlov cysts is the presence of spinal nerve root fibers inside the cyst cavity or the wall of the cyst. Depending on the size of the cyst, it may be symptomatic or asymptomatic. The larger the cyst, the more likely it is to be symptomatic.

Acknowledgement of Tarlov Cyst has not been added yet.

Smaller Tarlov cysts that are asymptomatic are more common and present in 5-9% of the population. The prevalence of large asymptomatic cysts is not exactly known, but they are believed to be rare. It appears that females are more commonly affected than men. Some affected individuals have cysts in other parts of their body as well such as hands, wrists, and abdomen. 


Name Abbreviation
Perineural cysts Tarlov cyst
Sacral, lumbar, thoracic or cervical nerve root cysts Tarlov cyst

The spinal cord and the rest of the central nervous system are protected by a structure called meninges. This membranous structure is made of three layers. The middle layer and the outer layer are separated by a space (subarachnoid space) that is filled by a fluid called cerebrospinal fluid (CSF). Tarlov cysts start in nerve sheaths, structures the surround and support nerve cells. The cysts communicate with the subarachnoid space which is filled with CSF. This allows CSF to enter the nerve sheath and cause dilation and expansion. 

The mechanism by which cyst formation is triggered is not known. Some theories suggest an inflammatory process within the nerve sheath or trauma that causes CSF to enter the nerve sheath as possible triggers. In addition, sometimes, a small asymptomatic cyst can grow larger and cause symptoms. In such cases, the opening between the cyst and the subarachnoid space can close off, leading to a buildup of CSF inside the cyst. This can happen due to trauma such as accidents or falls. As the cysts grow in size, they compress the surrounding nerves and cause pain and other symptoms. Larger cysts can also erode the surrounding bones and make them vulnerable to fractures.


Most cases of Tarlov cysts are asymptomatic. When symptomatic, affected individuals experience chronic pain in the area served by the affected nerves which are typically sacral nerves. This most commonly includes lower back, buttocks, and legs. If a cyst forms on upper parts of the spinal cord, pain in chest, upper back, neck, arms, and hands is also possible. Pain worsens when walking, changing position, or sitting for prolonged periods of time. Coughing and sneezing may also increase pain as they change the pressure of the CSF. Lying still on the back relieves pain. Other symptoms include numbness or tingling (paresthesias) and muscle weakness in these areas. An inability to control the bladder, changes in bowel function such as constipation, and sexual dysfunction are also experienced. Affected individuals may notice swelling, pain, pressure, and tenderness over the area where cysts have formed. In rare cases, the cysts may lead to the erosion of the surrounding bones and cause a fracture in response to normal amounts of stress (insufficiency fracture). Depending on the severity, if CSF pressure in the brain is affected, individuals may experience headaches, and sometimes, blurred vision, pressure behind the eyes, optic nerve swelling (papilledema), dizziness, and loss of balance. Some individuals experience sciatica. The sciatic nerve is the longest nerve in the body and it originates at the sacral level of the spinal column. It crosses the buttocks and extends down the leg into the foot. Sciatica is a syndrome that results in burning, tingling, numbness, stinging, electrical shock sensations in the lower back, buttocks, thigh, and pain down the leg and foot. Severe sciatica may also result in weakness of the leg and foot.

Name Description
Tarlov Cyst Perineural (or Tarlov) cysts are cerebrospinal fluid-filled nerve root cysts most commonly found at the sacral level of the spine, although they can be found in any section of the spine, which can cause progressively painful radiculopathy. The annual incidence of perineural cysts is estimated at approximately 5%, although large cysts that cause symptoms are relatively rare with annual incidence estimated at less than 1/2,000. Women are affected more frequently than men. Patients with perineural cysts present with pain in the area of the nerves affected by the cyst, muscle weakness, difficulty sitting for prolonged periods, loss of sensation, loss of reflexes, pain when sneezing or coughing, swelling over the sacral area, parasthesias, headaches, sciatica, and bowel, bladder and sexual dysfunction. The cysts typically occur along the posterior nerve roots and can be valved or nonvalved. The main feature that distinguishes perineural cysts from other spinal lesions is the presence of spinal nerve root fibres within the cyst wall or in the cyst cavity. The majority of perineural cysts are sporadic. However, in some cases cysts have been observed among relatives, suggesting the possibility of a familiar trait with autosomal transmission. There are a number of conditions that can cause the cysts to become symptomatic, including traumatic injury, heavy lifting, childbirth, epidurals, and trauma to the spinal cord. It has also been observed that the herpes simplex virus can cause the body chemistry to change and that perineural cyst symptoms worsen during herpes virus outbreaks. Diagnosis is based on magnetic resonance imaging (MRI), computed topography (CT) or myelogram of patients experiencing lower back pain or sciatica. The main differential diagnoses are meningeal diverticula and long arachnoid prolongations, which can be distinguished by rapid filling on myelography compared to the delayed filling of perineural cysts. Differential diagnoses also include herniated lumbar discs, arachnoiditis and, in females, gynecological conditions. Treatment involves lumbar drainage of the cerebrospinal fluid, CT scanning-guided cyst aspiration, decompressive laminectomy, cyst and/or nerve root excision and microsurgical cyst fenestration and imbrications. However, surgical treatment for perineural cysts is complicated by postoperative pseudomeningocoele and intracranial hypotension, and recurrence of the cyst. Pain therapy may offer a nonsurgical alternative for the treatment of symptomatic perineural cysts. Those who have progressive and prolonged symptoms may experience neurological damage if the cysts continue to compress nerve structures. (Copied from

Tarlov cysts may be discovered when affected individuals with low back pain undergo radiological imaging. Additionally, affected individuals may seek help for bladder control problems and urological tests would suggest a nerve-related cause. Diagnosis is confirmed via either magnetic resonance imaging (MRI) or computed tomography (CT) scan which reveal the cyst.

The most common technique to diagnose a Tarlov cyst is MRI, although CT scans are also used less commonly. In an MRI, radio and magnetic waves are used to visualize a segment of the organ in question. In a CT scan, x-rays are used to create an image of the organ or tissue of interest.

A myelogram is another more invasive imaging technique that can be utilized in the diagnosis of Tarlov cysts. During myelography, a special dye is injected into the spinal column and this allows for better visualization of the subarachnoid space, nerve sheath, and other structures on CT scans. This test is particularly useful to determine whether the cyst is connected to the subarachnoid space through an opening.  

In addition, in presence of bladder control problems, urological tests may facilitate the diagnosis of Tarlov cysts. In urodynamic studies, the bladder is filled with water and the response and the activities of the bladder are assessed and studied. Another test, cystoscopy, allows the clinician to examine the inside of the bladder through a small camera. If a Tarlov cyst is present, the bladder will be excessively muscular to compensate for the weaker nervous signal it receives from the spinal cord.

Treatment of Tarlov cysts may be non-surgical or surgical. Non-surgical therapies include pain management and CT scan-guided cyst aspiration. Pain medications plus medications used to treat chronic nerve related pain (such as antiseizure medications and antidepressants) may be helpful in some patients. NSAIDs (non-steroidal anti-inflammatory drugs) are an important adjunct to the treatment to help with nerve inflammation and irritation. Lidoderm patches used for post herpetic neuralgia (PHN) may be applied locally over the sacral area to provide some temporary relief of discomfort sitting and assistance with pain management. In Europe, this same product is marketed under the name Neurodol. When pain is intractable, despite a variety of interventions, or when other neurological symptoms become severe (ie. bowel and bladder dysfunction, severe paraesthesias,etc.), and the sacrum is eroding and remodeling, surgery may be the treatment of choice. Pain may be also temporarily controlled by aspiration of the cysts and then injecting the cysts with fibrin glue (a substance produced from blood chemicals involved in the clotting mechanism). The aspiration of CSF and injection of fibrin glue procedure theoretically is designed to remove the CSF from the cyst, and to block the entrance or the neck of the cyst with the sealant glue, to prevent return of the flow of CSF into the cyst. Some patients have found immediate relief after the procedure, while others have reported a delayed benefit from the procedure when the nerve irritation has subsided. After the procedure, there are outcomes of both short term relief, as well as longer term relief reported. Transcutaneous electrical nerve stimulation is another technique that has been shown to reduce pain in some affected individuals. This procedure relies on electrical impulses sent through the skin which reduces pain. Cyst aspiration is a procedure to remove the fluid inside a cyst to alleviate some of the symptoms. A CT scan is used to visualize the location of the cyst and guide the clinician in the procedure. However, there is a high risk of recurrence after this procedure.

The surgical treatment involves surgically exposing and opening the cyst to drain the fluid. Once the cyst is fully drained, a substance called a fibrin glue is injected to seal the cyst and prevent fluid from re-entering.


Those who have progressive and prolonged symptoms run a risk of neurological damage, if the cysts continue to compress nerve structures. If the nerve damage is progressive and affects bladder and bowel function and other body systems, it is important to have a good primary physician to coordinate referrals to specialists. Many patients become disabled and unable to continue to work, due to the pain and multi-systems affected issues. Individuals who undergo neurosurgery or those who have the cysts aspirated and injected with fibrin glue have varied results from no improvement to moderate improvement, but in some cases have worsened symptoms and more nerve damage from the procedures. There are also some patients who are much improved, evidenced by an increase in activities without the severity of symptoms recurring, and the need for less medications.There is no scientific analysis to date of all the compiled reports from the various procedures. The Foundation is working with the physicians and the researcher to provide collaboration, communication and an improved database of results of treatments. Collaboration of those very few members of the medical community who are willing to treat Tarlov cysts, as well as improved continuing medical education (CME) is essential to improve the short and long term prognosis of those diagnosed with Tarlov cysts.

Tips or Suggestions of Tarlov Cyst has not been added yet.

Andrieux C, Poglia P, Laudato P. Tarlov Cyst: A diagnostic of exclusion. Int J Surg Case Rep. 2017;39:25–28. doi:10.1016/j.ijscr.2017.07.045

Genetic and Rare Diseases Information Center. Tarlov cysts. 2018. Available from

Lucantoni C, Than K, Wang A, et al. Tarlov Cysts: A Controversial Lesion of the Sacral Spine. Journal of Neurosurgery. 2011;31(6):E14.

Langdown A, Grundy J, Birch N. The Clinical Relevance of Tarlov Cysts. Journal of Spinal Disorder Technology.2005;18:  29-33.

Community Details Update Created by RareshareTeam
Last updated 18 Mar 2020, 01:40 AM

Posted by RareshareTeam
18 Mar 2020, 01:40 AM

Hi everyone,

The Tarlov cyst community details have been updated. We added more information about the cause, prevalence, symptoms, diagnosis, and treatment. Hopefully, you find it helpful. 

Tarlov Surgery outcome? Created by Christl
Last updated 19 Nov 2019, 09:06 PM

Posted by Rmor711
19 Nov 2019, 09:06 PM

Posted by Rmor711
19 Nov 2019, 09:00 PM

This is for anyone that has had surgery. I just had surgery 3 weeks ago and am in so much pain. My legs still feel numb and neuron at times and my buttocks hurt all the way down the back of my legs. I can't sit for more than 20 minutes. I know they say this is normal but I'm really worried this won't go away. Any info is much appreciated. 

Posted by divinesunshine7
30 Jul 2016, 11:41 AM

Dr. Frank Fagenbaum has a website you can check out and then you can contact his office. He will do a phone consultant and you will send your records to him. He is in Dallas, Texas. My pain management would not cooperate and do the block. He even offered to speak to them. Many doctors do not have a great deal of knowledge about Tarlovs. Dr. F. Is one of few that do. Reach out to him. You can also contact the Tarlovs Cysts Disease Foundation and they can provide information as well. Unfortunately, I even had one doctor tell me that he would refuse to listen to anything they said because why does a cyst need a foundation. You have to be your own advocate. Remember before doctors we're reducated on MS they thought it was all in people's heads. The Tarlovs Foundation is partnering with Harvard for at least one study.

View Full Thread (20 more posts)
test Created by robert_RG
Last updated 27 Feb 2017, 12:33 AM

Tarlov Cyst Created by fiveand10jo
Last updated 13 Feb 2017, 05:58 PM

Posted by mjpercer67
13 Feb 2017, 05:58 PM

Yes, unfortunately I've been to many many doctors of several different specialties. PLEASE don't let them do any injections into your spine. Also please research Adhesive Arachnoiditis because many if not all patients that have TC have Arachnoiditis. The cysts by nature press the nerves to the edge causing clumping.

Posted by fiveand10jo
13 Feb 2017, 01:40 AM

*I was referred to an ortho spine physician vs neuro surgeon. Anyone been to an ortho spine consult?

Encouragement Created by divinesunshine7
Last updated 30 Jul 2016, 07:45 AM

Posted by divinesunshine7
30 Jul 2016, 07:45 AM

Doctors Remember that you must become your own advocate. Research and know what nerves effect what regions of the body. If you have Tarlovs on the sacrum know what nerves could be affected. You may have to educate the doctors. If they dismiss you, let them go and don't try to prove anything. Find a new one. Remember that they are your consultant and if they don't offer insight then keep looking. If they are not open minded, you don't want them as your doctor. Chances are you will be their only Tarlov patient unless they are a neurosurgeon. Family and Friends They may not be capable of understanding you. They will notice you have changed, but remember before you had this issue you probably had no need to really understand either. Be patient with others and understand that it is like a new culture for you. Some friends will move on and others will still be nice, but won't make much effort . Some fear what they do not understand and this can be easier for them to deal with by ignoring the need for change. Remember that while you cannot go hiking with them or shop all day or even sit on the hard seats at a baseball field with no back or neck support that your spirit is still the same and you are still as precious. This journey just means you will need to adjust. They do not likely relate to constantly assessing your environment for the most comfortable seat. They may also not understand your new found frustration over having to repeat things because of a lack of endurance or even that your house is messy or you left something on the floor because you could not bend over one more time. You will be seen differently so know who you are and look for validation in yourself. Learn to make your complaints more generic. I don't feel well is sufficient and leave the details off if you can. Hearing those details make most people uncomfortable. Keep a diary where you can put those thoughts and feelings that others don't want to hear. Otherwise you could appear as a Debbie downer. Spend some time with pets. They help the brain release endorphines and help relieve stress. Taking care of someone else is good for you. Forgive others for moving on after all, your paths are different. Be patient with your significant other. You are different to them now in some cases like a whole new person. They have to learn to adjust too. Learn about their style of communication and be complementary to that. Reassure them with appreciation. Don't criticize for things like how they fold the laundry, etc. Don't try to control the environment as this is a sign you need some introspection. Focus on controlling how you react. If you cannot do your old hobbies then find new ones. You are responsible for your own happiness and joy. Know the difference. Happiness comes from how you react to external environment and is externally driven. Joy is self generated from your spirit. It creates an equilibrium and state of gratitude. If you want to talk, please do. Here is where you can share details freely.

Massage Irritation Created by divinesunshine7
Last updated 30 Jul 2016, 07:14 AM

Posted by divinesunshine7
30 Jul 2016, 07:14 AM

Have any of you had a massage in the area of a Tarlov and it caused more pain?

Tarlov cyst diagnosis Created by cgolden
Last updated 30 Jul 2016, 07:10 AM

Posted by divinesunshine7
30 Jul 2016, 07:10 AM

I am glad that your pain specialist is willing to try the block. Mine would not do it. They probably read that any puncture to the spine could cause more of them and are afraid to risk making a mistake. Dr. F even offered to talk to them, but they were unwilling. There is still so much to learn about these and patients often have to become the expert. Remember that most of the doctors practicing today we're taught either nothing about them or taught that they do not cause symptoms. As long as your doctor is careful your spine should be fine and maybe you will notice a difference. It is something you will have to decide. How are you doing now? Any updates?

Posted by ljriley2016
27 Jan 2016, 11:05 PM

Hello. My husband was recently diagnosed with Tarlov Cysts. For almost 2 years we didn't and couldn't get answers to our questions until we finally did. You need to go to Tarlov Cyst Disease Foundation and also here and you could see how serious this issue is.There are only 2 surgeons in the country that specialize in Tarlov Cysts and one is in CA and one is in TX. Please, I hope you read this and will look into this more. Good luck and God Bless

Posted by cgolden
27 Nov 2015, 06:09 PM

Hi all, I flew to see Dr. F from Florida since I have 2 Tarlov cysts and pain that is consistent with them. One of them is 1 CM long and about to go on disability given the pain. I hate to give up my work. In the absence of anything else wrong and with a sucky quality of life, I figured it was a no brainer. He suggested I get a block at S-2 and see if i get pain relief and that would suggest this is my problem. My pain doctor suggested that it could still be the problem even if the block doesn't relieve the pain. What has been the experience of this group and why would i need to have the block. Has this been the group's experience?

Tarlov institute in Kansas city Created by Cklindner
Last updated 26 Jan 2013, 02:39 PM

Posted by melger2005
26 Jan 2013, 02:39 PM

Hello there I was just wondering if there is another option besides surgery to take care of the cyst. I am a mother of two young boys and there is no way I would be avle to have the surgery and be laid up in bed recovering. I dont want to miss my childrens lives. I also would like to know what other patients are taking for the pain.

Posted by gem0617
1 Mar 2011, 05:39 PM

If you are referring to Dr. Frank Feigenbaum then yes, I have heard of many positive outcomes from surgery with this Neurosurgeon. But you must remember, each individual is different and surgical results may differ from patient to patient due to age, additional medical conditions, or current cyst damage.

Posted by Cklindner
13 Nov 2009, 05:20 AM

Would love to hear from anyone who has been to the tarlov institute. Has anyone experienced success with tarlov surgery?

Community Resources
Title Description Date Link
AIMIS Spine, Nicosia, Cyprus

AIMIS Spine - American Institute of Minimally Invasive Spine Surgery


US & International surgeons beyond borders



AIMIS Spine is able to offer Tarlov Cyst Disease Surgical Treatment to International Patients through the expert and experience offered by Dr. Frank Feigenbaum.



Dr. Feigenbaum is an internationally renown Neurosurgeon with specific experience in treating Tarlov, Perineural and Meningeal Spinal Cord Cysts.



AIMIS Spine offers free MRI Reviews easily accessible through internet upload.



All MRI's and Patient Information is forwarded to Dr. Feigenbaum who will offer you a free, telephone consult based on the MRI and the medical history information you provide.



For more information on the AIMIS Spine, Tarlov Cyst Treatment Program please contact AIMIS Spine directly.

Canadian Tarlov Cyst Disease Support

Canadian Living is a Blog written and maintained by a Canadian Tarlov Cyst Disease Patient Advocate.



The Blog Contains Tarlov Cyst Specific Information, Patient Testimonials, Patient Stories, an extensive list of Tarlov Cyst Information and Patient Support Links, and other information directed at a Canadian audience, living within Canadian Healthcare and Legal Systems.




Orphanet is the reference portal for information on rare diseases and orphan drugs, for all audiences. Orphanet’s aim is to help improve the diagnosis, care and treatment of patients with rare diseases.



Orphanet services


Orphanet offers a range of freely accessible services:



An inventory of rare diseases and a classification of diseases elaborated using existing published expert classifications.


An encyclopaedia of rare diseases in English and French, progressively translated into the other languages of the website.


An inventory of orphan drugs at all stages of development.


A directory of expert resources, providing information on expert clinics, medical laboratories, ongoing research projects, clinical trials, registries, networks, technological platforms and patient organisations, in the field of rare diseases, in each of the countries in Orphanet’s consortium.


An assistance-to-diagnosis tool allowing users to search by signs and symptoms.


An encyclopaedia of recommendations and guidelines for emergency medical care and anaesthesia.


A fortnightly newsletter, OrphaNews, which gives an overview of scientific and political current affairs in the field of rare diseases and orphan drugs, in English and French.


A collection of thematic reports, the Orphanet Reports Series, focusing on overarching themes, directly downloadable from the website.



The organisation and governance of Orphanet


Orphanet is led by a consortium of around 40 countries, coordinated by the French INSERM team. National teams are responsible for the collection of information on expert centres, medical laboratories, ongoing research and patient organisations in their country. All Orphanet teams work according to the Orphanet Standard Operating Procedures.



The French coordinating team is responsible for the infrastructure of Orphanet, management tools, quality control, rare disease inventory, classifications and production of the encyclopaedia.



Orphanet is governed by various committees, which independently supervise the project in order to ensure its coherence, evolution and viability.



At European level


The Management Board is composed of Orphanet country coordinators. This committee is chaired by the director of the Inserm-Orphanet department. This board identifies funding opportunities and guides the project.


The Steering Committee is composed of representatives from the agencies and bodies which finance Orphanet’s core services. This committee is chaired by the director of the Inserm-Orphanet department. This committee ensures that Orphanet’s content reflects the policy, strategy or plan at the country level in the field of rare diseases.


The International Advisory Board is composed of experts proposed by the Management Board and nominated by the Steering committee. Board members are in charge of advising the Steering committee regarding the overall strategy of the project.



At national level


The National Advisory Board is composed by members nominated by the appropriate legitimate institutions which are defined at country level. The board members contribute with their expertise to Orphanet at country level.


Tarlov Cyst Disease Foundation

This Foundation is dedicated to the mission of finding the best possible solutions that will resolve the life-altering problems caused by symptomatic Tarlov cysts (perineural cysts,sacral nerve root cysts).



The Tarlov Cyst Disease Foundation is an advocate for patients and promotes research and education about Tarlov cysts. The website provides information about symptomatic Tarlov cysts, which may cause such symptoms as sciatica, difficulty sitting or standing for more than short periods of time, coccyx (tailbone) pain, pain in buttocks and legs, leg cramps, paresthesias (strange sensations in legs and feet), bladder and bowel dysfunction,chronic pelvic, abdominal, and genitalia pain.



If the cysts are located higher in the cervical,thoracic, or lumbar sections of the spine, the symptoms can cause pain and paresthesias in the neck, shoulders,chest, arms, legs, and lower back.



If you, or a member of your family, friend or a patient has been diagnosed with Tarlov cyst(s), we believe that you will gain beneficial information and hope from your visit to this site.



We also hope that you will share with us, what you have already learned, in order to benefit the research and education the Foundation is providing. The composite of our shared information leads to improved communication, understanding and proof that you are not alone in the struggle to find assistance and support. Our combined efforts will provide present and future benefits. Research and education are the keys!



The Foundation's achievement of specific purposes and objectives will provide hopeful solutions for the future. We will work tirelessly to bridge the gap of missing knowledge until that mission is accomplished.






Tarlov Cyst Disease Foundation Board of Directors


Tarlov Cyst Survival - Patient Support Group

Tarlov Cyst Survival is a Yahoo group created by a Tarlov Cyst Disease Patient with over ten years of Tarlov Cyst Patient Advocacy experience.



This is a Yahoo Patient Support Group with an extensive International Membership. Hundreds of Tarlov Cyst Disease Patients have worked hard to develop a collection of medical research and experience based information offered to support and educate Tarlov Cyst Disease Patients.



Membership is made up of other Tarlov Cyst Disease Patients who support, encourage, share and educate each other providing new patients with the opportunity to learn, understand and advance their own situations.



The group offers compassion and respect with minimal moderation allowing for honesty and respect for each patients right to individual beliefs and behaviours.



"Please treat others how you wish to be treated".



Many patients have developed lifelong friendships with others who truly understand.



This is a closed group providing privacy and security to members.



Application and Introduction required.



Clinical Trials

Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit to enroll.

Community Leaders


Expert Questions

Ask a question

Community User List

My husband was diagnosed with Tarlov Cyst Disease in 2015. The treatment has just been for pain management but I'd like to know what else is out there.

I have just undergone my second TC surgery for a recurring S2 cyst. First surgery was successful in 2009 with no post op complications. My recent surgery was 2 days ago and I'm on home rest for a...
Recently diagnosed with tarlov cysts and seeking information.
Recently diagnosed with Tarlov Cyct at S2. Looking for local/online support groups and ways to treat pain.
I was diagnosed in March 2016. I have had Mri's and CT scans. I seen a neosurgeon he is not concerned about my thoracic cyst he said the pain is in my lower spine.
Had TC surgery in KC in 2011. Did not improve. Still looking for a solution.
Recently diagnosed with a 1.7 cm S1 Tarlov cyst. It is symptomatic. Communication with others with experience would be most helpful.
I sustained an injury and it has been a long journey with doctors. I herniated some discs one badly enough that it pinched the spinal cord. Formed Tarlovs at different levels including the neck. I...
I have been diagnosed with Tarlov cyst(s).
Bird shot patient since 2005 but diagnosed in 2015 been on cyclosporine since 2008 since diagnosis they added cellcept 2000mg daily 50 mg prednisone and an orzudex implant for the first time in...
I am a 41 year old female, was in rear ended in 2014. have been having issues ever since. been to several doctors and not one of them could find where all the pain was coming from. I obtained my...
Hi im 43 year old landscape manager from Scotland, suffered from sciatica for about 10 years . July14 massive bout of sciatica , mri sep14 large l5s1 prolapse microdissection Dec 14 failed .Feb 15...



I 'm Laura. My husband , Joseph is the person with the rare disorder. Tarlov Cysts. For months, almost 2 years, we went back and forth to different doctors, trying to get answers...
My name is Eleanor. I am 54 years old. I have been diagnosed with bulging disc and tarlov cyst 7 years ago and I have been in pain since then.
I have Tarlov cysts


I am a 51 year old female living in Wisconsin
I have had tarlov cyst diagnosed for 3 years now, how found no relief and they just continue to grow.
My perineural cyst were discovered occasionaly in a MRI made in 1999. Only in 2010 a neurologist labelled them as symptomatic Tarlov cyst. In the following years I had ups and downs (I never took...
My perineural cyst were discovered occasionaly in a MRI made in 1999. Only in 2010 a neurologist labelled them as symptomatic Tarlov cyst. In the following years I had ups and downs (I never took...
Mother of 3. 2007 showed cysts in the sacrum s2, 2nd mri in 2014 showed it slightly larger. None of the dr's has said I have tarlov cyst but when I ask they say confirm they are cysts but they...
I have five Tarvol cyst large in size, from 5mm to 8mm that cause a lot of pain in my spine. This was found on the MRI test due to back pain and sharp pains in my right side. I am not sure what the...
I suffer from Tarlov cyst disease
Grandma with tarlov cyst s2 diagnosed 2014


Recent diagnosis of Bilateral Tarlov Cysts at s1.
I'm from Chile, my English it isn't good, I've 3 beautiful kids and a husband.


My TC is in cervical zone (c5-c6) . I've a surgery on November in Chile , but the TC it's here again. I want to...
I was diagnosed with 3 xTarlov cysts on 3 June 2013 and then had surgery by Dr Feigenbaum on 5 August 2013 in Cyprus.
I was recently diagnosed with Tarlov and synovial cysts on my spine
I have been suffering from Tarlov Cyst since April of 2012. I just want to communicate with other patients who have the same problem. The doctors I see here in town really have no idea what they...
I have 3 Tarlov Cysts in my cervical spine. I had a severe injury to my neck and these were found later during an MRI. I have always had ritht and left intermittent sciatic pain. I have had...
Life altering Tarlov cyst, pineal brain cyst, chronic pain person who has been rejected by medical community.
I am living with a rare diagnosis of Cervical Tarlov Cysts and a giant Sacral Meningeal Cyst.



I live in Brampton, ON and there is no treatment, and no Canadian support that I've found...
I have a lot of health problems but manage with the power of the Lord to keep myself out of the pity pot (most days) and to maintain a sense of humor.


I'm happily married, have one son, two...

Start a Community

Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

UX TESTERS NEEDED: HelpAround Specialty Patient App

Created by | Last updated 10 Jun 2020, 04:53 PM

Community Details Update

Created by RareshareTeam | Last updated 18 Mar 2020, 01:40 AM

Tarlov Surgery outcome?

Created by Christl | Last updated 19 Nov 2019, 09:06 PM


Created by robert_RG | Last updated 27 Feb 2017, 12:33 AM

Tarlov Cyst

Created by fiveand10jo | Last updated 13 Feb 2017, 05:58 PM


Created by divinesunshine7 | Last updated 30 Jul 2016, 07:45 AM

Massage Irritation

Created by divinesunshine7 | Last updated 30 Jul 2016, 07:14 AM

Tarlov cyst diagnosis

Created by cgolden | Last updated 30 Jul 2016, 07:10 AM

Tarlov institute in Kansas city

Created by Cklindner | Last updated 26 Jan 2013, 02:39 PM


Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.


Our Resources

Our rare disease resources include e-books and podcasts





Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.