FAQs


Frequently Asked Questions

  1. What causes Tarlov cysts?

  2. What are the most common or most prevalent symptoms of symptomatic Tarlov cysts?

  3. How are Tarlov cysts most often diagnosed?

  4. What can I do to improve or control my symptoms, while I am waiting for an appointment with a knowledgeable doctor who will assist me with treatment?

  5. What are current treatment options for TCs and what are the long term outcomes?

  6. What are the medical specialties most knowledgeable about Tarlov cysts and contact information for the physicans willing to treat them?

  7. Are there other diagnostic tests that the neurosurgeons might request?

  8. How do I get my family and friends to understand more about this medical condition and how my life has changed living with this diagnosis?

  9. How do Tarlov cysts affect bowel and bladder?

  10. Will physical therapy help my symptoms?

  11. What are some alternative treatments for TC other than surgery?

  12. My symptoms have become progressive to the degree that I can no longer work. Can I apply for SSD (Social Security Disability)? How do I do that?

ANSWERS TO FAQs:

1. What causes Tarlov cysts?

The cause of Tarlov cysts is unknown, but there are several theories including a tendency to develop a weakness in the meninges (covering of the brain and spinal cord ) or a weakness that is present at birth. Some who have Tarlov cysts have connective tissue disorders as well, and there is a question regarding the incidence of both in some patients. There seems to be a significant incidence of history of trauma related to the onset of the most severe symptoms associated with Tarlov cysts in the majority of patients. It is possible that the Tarlov cysts have been present, but asymptomatic for a number of years, and then are triggered by a traumatic incident causing further pressure or injury to the spine and causing the cerebrospinal fluid pressure (CSF) to increase, the cysts to develop, fill with spinal fluid, enlarge, press on spinal nerves and become symptomatic. Some of these incidents that Tarlov cyst patients have shared are automobile accidents (especially rear end collisions), childbirth, heavy lifting, falls, etc. Several patients who have Tarlov cysts have indicated that their symptoms began after receiving an epidural for anesthesia for a surgical procedure or childbirth. Some patients indicate worsened symptoms when there is presence of a herpes simplex outbreak, so the question exists as to possible viral or bacterial causes, but there have been no reports or studies to indicate that as a proven factor. Since it is known that approximately 90% of the general population has antibodies for the herpes virus, it is a doubtful link as a cause, but it is interesting that some patients report that their symptoms worsen during an outbreak of the virus.

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2. What are the most common or most prevalent symptoms of symptomatic Tarlov cysts?

Symptoms of expanding/enlarging cysts occur due to compression of nerve roots that exit from the sacral area. Symptoms may include the following:

  • Pain in lower back (particularly below the waist) and in buttocks, legs, and feet

  • Weakness and/or cramping in legs and feet

  • Parasthesias (abnormal sensations in legs and feet)

  • Pain sitting or standing for even short periods of time

  • Pain when sneezing or coughing

  • Inability to empty the bladder or in extreme cases to urinate at all

  • Bowel or bladder changes, including incontinence

  • Swelling over the sacral area

  • Soreness, a feeling of pressure and tenderness over the sacrum and coccyx (tailbone), extending across the hip and into the thigh

  • Headaches (due to changes in the CSF pressure)

  • The feeling of sitting on a rock

  • Pulling and burning sensation in coccyx (tailbone) area, especially when bending

  • Sciatica

  • Vaginal, rectal and/or abdominal pain

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3. How are Tarlov cysts most often diagnosed?

The best images of Tarlov cysts are seen on magnetic resonance images (MRI). Your doctor might also request a myelogram and/or myelogram/CT to determine the flow of cerebrospinal fluid (CSF) into the cysts.

It is not unusual for the MRI report to state that the Tarlov cysts are an incidental finding and of no clinical significance, since 4-5% of the population have asymptomatic cysts, and only 1% of that number have cysts that become symptomatic. Your doctor may not mention the Tarlov cyst findings to you, because of this misinformation and lack of understanding in the medical community.

It is important for you to have copies of the radiologist reports for future comparisons, and also to acquire a copy of the film or CD of the images, when you can get referalls for a second opinion from someone who is knowledgeable about Tarlov cysts. The reports that have indicated the presence of Tarlov cysts should indicate the specific location of the cysts (most prevalent at S,2,3 ) and the dimension of the cysts (usually reported in mm. or cm. measurements). If these descriptions are not included, you can ask the radiologist to include them for a more complete and accurate report.

This is important also for future comparisons, after treatment, to determine decrease or increase in size of the cysts, as well as the presence of new cyst formation.

These diagnostic tests are also important in ruling out any other spinal pathology, such as osteoporosis, slipped/ruptured/herniated disc, DDD, scoliosis, kyphosis, or lordosis.

Description of your symptoms, the diagnostic tests and your doctor’s physical examinations are the best combination for the most accurate diagnosis. It is important to communicate with your doctor sharing any information regarding the onset of your symptoms and the best description you can provide about your symptoms. It might be important for you to keep a daily journal about your activities, symptoms, and medications taken between physician visits in order to provide an accurate and documented account to share with the doctor.

For more understanding of what Tarlov cysts are, please read Tarlov Cyst Information on the Website homepage.

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4. What can I do to improve or control my symptoms, while I am waiting for an appointment with a knowledgeable doctor?

The answer to this question is, of course , very individualized based on what your symptoms are, but if your symptoms include pain in the lower back, buttocks, and legs, including parasthesias, then you will want to avoid doing any heavy lifting, straining, or pulling that puts pressure on your lower back and causes pain.

Some patients have found that ice packs over the sacral area bring some relief, while others indicate that heat applications are the best to provide some pain relief. There are heat packs that last up to 8 hours that might be sold in your local drug stores.

Since sitting for long periods of time may cause increase in symptoms, you will wish to avoid sitting or standing beyond your personal limitations . There are various zero-gravity pillows, cushions and chairs that take pressure off the sacrum, coccyx, and buttocks when sitting, that some patients have found very helpful. Since everyone is different, it would be difficult to recommend one that would work the same for all. A system of trial and error is probably the best test for what is the most comfortable for you. Most TC patients are more comfortable in a reclining position than sitting or standing, and find it necessary to change positions frequently.

Avoiding constipation is very important to prevent straining and causing more pressure on the cysts in the sacral area. Increasing fluid intake and adding fiber to your diet are important habits to help prevent constipation. A stool softener might be necessary, if you notice that your bowels are not moving regularly.

Pain management is important and might require referral to a pain management specialist for direction in pain control. Until you have an appointment with a physician, the anti-inflammatory medications that are over the counter (OTC) such as Aleve, Advil or Motrin are sometimes helpful, but again, you may require prescription medications for severe pain that is not relieved by non-prescription medications. Some patients have successfully used meditation, relaxation techniques or biofeedback to help them control some of the pain breakthrough.

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5. What are current treatment options for TCs and what are the long term outcomes?

Most Tarlov cysts are discovered on MRI, CT or Myelogram. It is sometimes confusing to make an accurate diagnosis as to the cause of the symptoms, if there are multiple diagnoses found, such as herniated discs, ruptured disc or degenerative disc disease (DDD). It is sometimes diagnostically conclusive that the cysts are the cause of symptoms, when pain is improved by aspirating the fluid from the cysts. Although using a needle to aspirate cerebrospinal fluid (CSF) from the cysts can temporarily relieve symptoms, eventually the cysts will refill and the symptoms will recur usually within hours. Similarly epidural steroid injections (ESI )may provide some short term pain relief. 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 glue sealant, 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 (TENS) has proven useful for some in pain management. TENS devices deliver electrical impulses through the skin to the cutaneous (surface) and afferent(deep) nerves to control pain. Unlike medications and topical ointments, TENS does not have any known side effects, other than skin irritation from the electrodes seen in some patients.

How does TENS control Pain?

There are two major theories as to how electrical stimulation relieves pain. According to the "gate control theory", pain and non-pain impulses are sent to the brain from the local nervous system. These pulses travel through the cutaneous nerves to the deeper afferent nerves and then to the spinal cord and brain. The gates prevent the brain from receiving too much information too quickly. Since the same nerve cannot carry a pain impulse and a non-pain impulse simultaneously, the stronger, non-pain impulse (from the TENS device) "controls the gate". According to the second theory, TENS stimulation encourages the body to produce natural painkillers called endorphins. These chemicals interact with receptors, blocking the perception of pain. This is similar to the way the drug Morphine works, but without the side effects associated with the pharmaceutical drug.

Using diet or dietary supplements to decrease the body’s alkalinity may prevent perineural cysts from filling with more fluid. Pain medications plus medications used to treat chronic nerve related pain (such as antiseizure medications and antidepressants) may be helpful. 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, and the sacrum is eroding and remodeling, surgery may be the only option. There are a small number of physician’s in the world who have surgical expertise in the treatment for TCs, and the long-term outcome of surgery is not highly successful at this time. The usual surgical procedure consists of fenestration and imbrication of the cysts and then packing all the dead space around the cysts with fat, glue, and/or muscle. The body does not like dead spaces, and new cysts will possibly develop in the dead spaces around the old cysts, if not completely filled. Due to the potential risks for further nerve damage, there might be increased symptoms postoperatively, including more bowel and bladder problems.

It is difficult to comment about long-term outcomes, since there are no scientific studies that reflect long term outcomes, with a cumulative data base of information from all treatments currently being attempted. While there currently are no scientific data analyses on the various forms of treatment (particularly AFGI & Surgery), the Tarlov Cyst Disease Foundation will be providing funding in the future to research groups for this purpose. Cumulative data will be collected from both physicians and patients to insure the most accurate analysis of procedures and outcomes, as well as providing a data base for future dedicated clinical research regarding Tarlov cysts.

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6. What are the medical specialties most knowledgeable about Tarlov cysts and contact information for physicans willing to treat them?

Please see Find a Doctor on the homepage for specific contact information for the small number of physicians who have been reported to treat Tarlov cysts and who might be located near you.. Generally speaking, the medical specialty categories of the physicians who are more knowledgeable about Tarlov cysts and are willing to attempt treatment are  Neurosurgeons, Interventional Neuroradiologists, and Pain Management specialists.

* Note: the list of doctors in Find a Doctor are possibilities for you to further investigate, contact and  discuss with them their willingness to review your films and determine possible treatment options. The decision of choice is always yours, and you must be comfortable with your physician; the Foundation cannot recommend whom you should see, but we have provided a list with contact information, so that you might more easily determine possibilities to provide your care.

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7. Are there other diagnostic tests that the neurosurgeons might request?

Yes, there are several other diagnostic tests that your physician might order which can provide more information about nerve damage, bone erosion, bladder function, and to rule out any other spinal pathology that might be the cause of your symptoms instead of and in addition to Tarlov cysts.

Some of these tests are Discogram, Bone Scan, Urodynamics, Electromyogram (EMG) and Nerve Conduction Velocity (NCV) studies.

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8. How do I get my family and friends to understand more about this medical condition and how my life has changed living with this diagnosis?

It is important to educate your family and friends about Tarlov cysts as you are learning more about your personal situation and about the diagnosis.

You will need their support and understanding to help you cope with living with chronic pain, and other changes that you may note are taking place in your body. It is usually difficult to explain everything that you feel to even your closest friends and family. You might wish to look in the Our Library section for the Letter to Family and Friends to help you write your own letter to them, explaining how you feel and to help them understand, or you have permission to use the letter as it is. Communication is critically important, because this diagnosis is not easily treated or resolved, and it affects all those who are close to you to see the changes caused by living with this diagnosis. Refer them to this website for Tarlov Cyst Information.

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9. How do Tarlov cysts affect bowel and bladder?

The effects of the cysts on bladder and bowel function are variable and there may be no changes in bowel or bladder habits. Dependent on the location and size of your cysts and whether they are pressing on nerve roots that are important for bowel and bladder function, you may not notice any problems. Some patients have experienced the inability to urinate or to empty the bladder completely. Due to these problems some have experienced an increase in urinary tract infections (UTI) or cystitis. If you are taking narcotics, constipation can become a problem and may require the use of stool softeners, increasing bulk in the diet, and increase in water intake. It is always important to communicate with your physician to let them know if you are experiencing changes in bowel or bladder function. Urodynamics testing might be ordered to determine how well your bladder is functioning.

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10. Will physical therapy help my symptoms?

This is a very individualized question and one answer does not fit all. Generally, it depends on your specific situation, symptoms, and the knowledge of your therapist regarding Tarlov cysts. As is the case of there being a small number of physicians who are knowledgeable about Tarlov cysts, there is also a small number of physical therapists who have knowledge and training about Tarlov cysts. Several patients with Tarlov cysts have had their symptoms and pain levels increase due to physical therapy. So, the best answer is that it is important to discuss your situation with the physical therapist and determine their level of knowledge and proceed with caution before undergoing physical therapy. A rule of thumb in the case of physical therapy for symptoms of Tarlov cysts, is that if it increases your pain and symptoms, then you should stop. Listen to your body talk to you, and if any activity that you are doing increases your pain and symptoms, then you should stop doing those activities.
Light massage might prove effective for relaxation of muscles that tend to cramp and are painful; however, vigorous massage over the area of the cysts could prove to be more painful . Communication between the physician and the therapist is important as it relates to physical therapy/physiotherapy of the patient with Tarlov cysts. Assessment by the patient regarding what is effective and what is not is also important to be communicated to the physician and the physical therapist. These communications are important in determining whether physical therapy is beneficial or harmful. In some cases, physicians may order light physical therapy post-operative to strengthen weakened muscles that may have atrophied.
Again, each therapy has different benefits for each patient, as each medication might have different results for individual patients.

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11. What are some alternative treatments for TC other than surgery?

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12. My symptoms have become progressive to the degree that I can no longer work. Can I apply for Social Security Disability (SSD)? How do I do that?

Yes, if you and your health care provider have determined that you cannot continue to work or return to work after you have had treatments that have not been successful, then you should consider applying for Social Security Disability. If approved, it will provide you with insurance, which you will probably no longer have after your COBRA options have been completed in 18 months, after leaving your job. It is recommended that you contact the Social Security Administration (SSA) via the internet at www.ssa.gov. At their website you will find all the information needed and the answers to your questions about the process. You may decide to check your local phone directory to determine attorneys who specialize in assisting clients with application for disability.

The Social Security disability insurance program pays benefits to you, if you worked long enough and paid Social Security taxes.

Social Security pays benefits to people who cannot work because they have a medical condition that is expected to last at least one year or result in death. Federal law requires this very strict definition of disability. While some programs give money to people with partial disability or short-term disability, Social Security does not.

In general, to get disability benefits, you must meet two different earnings tests:
1. A "recent work" test based on your age at the time you became disabled; and
 
2. A "duration of work" test to show that you worked long enough under Social Security

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