The author, except where noted, is not a physician, has no medical training, and can not provide advice that only licensed professionals can give.  This website does not recommend or endorse any specific treatment, drug or procedure. Use of the site is strictly subject to your agreement with the Terms and Conditions of our User Agreement. You should always consult a medical professional before beginning any treatment.

1. Is the condition Tarlov cysts or Tarlov disease?

2. Are Tarlov cysts a kind of cancer?

3. What are the disability impacts of symptomatic Tarlov cysts?

4. How to get a diagnosis?

5. What are the non-surgical treatment options?

6. What are the surgical options?

7. What are the usual post-op restrictions?

8. What tests will the urologist do?

9. What tests do neurosurgeons use?

10. How about exercise, physical therapy or TENS?

11. What medications are used for Tarlov cysts?

12. Do Tarlov cysts cause bladder problems?

13. Do Tarlov cysts cause bowel problems?

14. Can Tarlov Disease cause death?

Is the condition Tarlov cysts or Tarlov disease?

The term Tarlov cyst is ambiguous, inasmuch as it may be taken to refer to a harmless anatomical feature or a potentially grave disease condition. For this reason, we are introducing the unambiguous term, Tarlov disease.  

In promoting the use of the name Tarlov disease, we are following the convention of naming a disease after the researcher who first discovered or effectively disseminated information on the disease, in this case, the great pioneer in neurosurgery, Isadore Tarlov.

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Are Tarlov cysts a kind of cancer?

Tarlov cysts are not cancer. Symptomatic Tarlov cysts are morbid enlargements that continue to grow, which, according to historical usage, qualifies them to be classed as tumors; however, Tarlov cysts grow from the pressure of spinal fluid within them, not through abnormal cell division. So Tarlov cysts are not neoplasms or cancer.

Like cancer, however, Tarlov cysts can cause severe debilitating pain and can also damage distant organs; Tarlov cysts do this by affecting the flow of nerve energy and the pressure of spinal fluid.

Like cancer, Tarlov cysts can cause intractable pain and can lead to severe depression and suicidal behavior.  Unlike cancer, symptomatic Tarlov cysts are rarely diagnosed. There is no medical "industry" in the diagnosis and treatment of Tarlov disease. 

Tarlov disease can advance to the stage of constant excruciating pain. If not successfully treated, a person in this stage of the disease can die from the stress of the suffering, from the pain medications (hepatitis), or from suicide.  Although Tarlov disease is not a form of cancer, it should be should be taken with as much seriousness by doctors, patients and their families.

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What are the disability impacts of symptomatic Tarlov cysts?

Different Tarlov cyst sufferers respond differently to various postures and activities, and there is no typical onset or rate of progression of the disease. Some experience severe pain at onset, but the symptoms are mild at onset in other cases. Difficulty sitting is perhaps the most common disability. Frequent change in position and frequently lying down to rest are the measures required by most patients to get relief from loow back and, often, leg pain.

Many persons with Tarlov cysts report that they are able to exceed their usual postural or activity limits for a time, but they then "pay for it" by experiencing a delayed flare. For example, after exceeding their quota earlier in the day, they will later in the day experience pain that is so severe that, even with narcotic pain medication, they cannot sleep. Flares can last for days, weeks, and even months

A doctor might write, correctly, "The patient showed no sign of distress during the visit," and the patient will be denied disability benefits because of that statement, even though, in fact, the patient was afterward housebound and bedridden for several days or weeks, because the amount of sitting and walking involved in the doctor's visit exceeded his or her personal quota.  Follow link for an example.

An individual's symptoms can vary drastically in response to environmental conditions or other variables. The disability impacts of symptomatic Tarlov cyst were summed up in the following statement by a spine specialist retained by a American governmental agency (Social Security Administration) to evaluate a Tarlov cyst patient:  

"He needs to sit when he needs to sit, walk when he needs to walk, and lie down when he needs to lie down."

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How to get a diagnosis?

Generally speaking, the first step out any of the common causes of the symptoms, and this can be done by local specialists  at the nearest referral center.  This might include a referral to a urologist to check for neurogenic bladder. The urologist will examine the bladder wall and test bladder functions that are potentially affected by sacral nerve root disorders. Sphincter problems are common with Tarlov cysts.

When all other causes of the symptoms have been ruled out, then it becomes necessary to obtain a diagnosis of the Tarlov cyst. More often than not, patients cannot find a specialist with sufficient experience locally.

Sometimes patients and their doctors assume that any world-renowned hospital will offer diagnosis of any disease, however rare. However, this is not the case with such a rare disease as Tarlov cysts. Fortunately, there are top hospitals in the U.S., Europe and other countries (we hope in the future to have good information from Japan and other Asian countries) where Tarlov cysts are diagnosed and treated.

It is extremely important that a person is not suffering from inadequately treated pain while searching for a diagnosis. A person who is suffering from severe pain is at grave risk of rushing to a decision, of deciding to have surgery by a surgeon who has more salesmanship that surgical techniques. A surgeon might operate frequently and Tarlov cysts yet have a low rate of success, or operated less often with a high rate of success.

Although one is not obligated, in practice the choice of a specialist for diagnosis is often tantamount to choosing the surgeon for surgery; therefore, the choice should be made just as carefully as if you knew for certain that the doctor doing the diagnosis would be operating you you. One should not be swayed by 1 or 2 persons reporting success, especially if 10 or 20 have not had satisfactory results or are worse off after surgery by a particular surgeon.   

The evaluation of results based on members' reports does not provide a basis for the Tarlov Cyst Association or any of its staff to say which doctor they should see or which treatment they should seek. Those who register with the Tarlov Cyst Association have access to various resources for learning about different treatments and surgeons, and registered members can read what other members have to say about their results from different treatments and doctors.

Practicalities

• If you receive an an order for a diagnostic radiological procedure from an out-of-town specialist, the protocol is as follows (the applies at least to the United States): you pass the order to your primary care physician.  He orders the procedure (ask your physician to attach the order of the out-of-town specialist to his own order, and make sure that the radiology lab and the technician sees a copy of the specialist's order). Your PCP's nurse should phone the radiology lab to schedule the procedure and inform you of the appointment details. 

• Conventionally, lumbosacral scans are stopped at the S1 level. It may be necessary, therefore, for the prescribing doctor or even the patient to inform the technician that all sacral levels must be scanned.

• Neurological/orthopedic examinations usually include movements that can cause a severe, long-term flare to a patient with a Tarlov cyst. These include the procedure in which the doctor forcefully raise the leg while the patient is lying on the back, as well as the test is which the patient is asked to bend down as far as possible as if to touch one's toes. It is suggested to inform the doctor of your limitations. Follow link for an example.

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What are the nonsurgical treatment options?

Fibrin glue injection (FGI) is nonsurgical treatment option without the costs, pain and recovery time of open surgery. The procedure is for valved cysts that are sufficiently slow-filling, so as to minimize the risk of the glue escaping into the thecal sac, the main body that holds the spinal fluid, or the spinal fluid refilling the cyst before the glue has set. 

The means by which fibrin glue works is not known with certainty. Current thinking is that fibrin sealant acts as an irritant--a foreign body that provokes the formation of scar tissue and serves as a matrix for the scar tissue to form in the mouth and cavity of the cyst in order to seal the channel(s) for the flow of spinal fluid into the cyst.

A myelogram with delayed CT scanning might or might not be ordered to see if the cyst is sufficiently slow-filling. Contrast may be injected before fibrin glue in for the same purpose. FGI is typically carried out by an interventional neuroradiologist, sometimes with the assistance of the referring neurosurgeon. The success rate of this treatment varies widely from hospital to hospital (subscribe to TarlovTalk to review outcome surveys).

A cyst sealed by fibrin glue may or may not shrink, so the fact that post-operative scans show the cyst has not shrunk is not in itself evidence that the procedure has failed. If the cyst does shrink, it can continue to shrink for a very long time. In the author's experience,  an S2 cyst sealed by FGI suddenly became asymptomatic after 2-1/2 years. MRI showed the cyst had been totally absorbed back into the nerve root.

Today, packaged fibrin glue (Tisseel brand) is used instead of glue made from the patient's own blood at the hospital lab, as in the original clinical trial.  A more recent clinical trial of FGI was instigated at Johns Hopkins by neuorosurgeon Dr. Donlin Long. There, interventional neuroradiologist Dr. Kieran Murphy recently began using  an additional needle to vent the cyst during aspiration and injection. Early reports on outcomes of FGI at Johns Hopkins are relatively promising. As mentioned above, the results from FGI may be less definitive and longer in coming than from surgery, but FGI also lacks the risks, cost and recovery time of invasive surgery. 

One hypothesis developed in our alternative treatments forum (TarlovAlt) regards the possibilities that 1) herpes viruses can cause some Tarlov cysts to be symptomatic, 2) herpes viruses thrive in an alkaline environment, 3) diets or supplements that make the Tarlov cyst environment acidic can thereby reduce or eliminate Tarlov cyst symptoms, and 4)  L-Lysine, a widely available and inexpensive amino acid thought to be effective against Herpes could relieve Tarlov disease symptoms. Several Tarlov Cyst patients have achieved excellent control of their symptoms through dieting or L-Lysine.

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What are the surgical options? 

The number of surgeons who have established a good ratio of successful to failed operations, confirmed by the experience of our members, is extremely small. It is not unusual for a surgeon to have been "burned" by an attempt at Tarlov cyst surgery that failed badly, harming the patient and the surgeon's reputation, as a result of which the surgeon, and other surgeons who hear of the experience, say that they "would not touch a Tarlov cyst with a 10-foot pole".

There are a number of different types of Tarlov cyst surgery that are described in articles found at this Website and at the TarlovTalk Forum home page.  Often any type of Tarlov cyst operation is called a sacral laminectomy, although the laminectomy is only the orthopedic portion of the operation--the removal of bone needed to gain access to the cyst(s). 

The possibility of less invasive surgery for Tarlov cysts may depends on the development of flexible instruments suitable for sacral neuroendoscopy. At present, Tarlov cyst surgery is invasive. Recovery time varies considerably; many patients say that the estimate of recovery time given before surgery was too short, and it is not unusual for recovery to last between 12-18 months.

While there is no standard post-operative instructions for patients. Reports of outcomes from members favor more restrictive instructions, strict compliance, and long-term avoidance of straining and other Valsalva events.

Tarlov cyst operations are available only where a surgeon is interested in treating this disease. Most top hospitals around the world, with several notable exceptions, provide no treatment whatsoever for Tarlov cysts. When it is performed, it is most often a neurosurgeon who performs the Tarlov cyst surgery. However, orthopedic surgeons also do Tarlov cyst surgery. Follow link for an orthopedic physician's description of his protocol.

Surgeons' claims of a high level of success may not be accurate because as patients are reluctant to complain to their surgeons. It is possible that the surgeon is offering an operation for Tarlov cysts that he believes to have a high rate of success, but when our members report their results to us, the success rate is very low. Therefore, reports on surgical outcomes from members of this group may be be more reliable than the surgeon's estimation.

Post-operative CSF leak is the most common complication, but these leaks can heal themselves in some cases. The patient might be advised to stay in bed with the foot of the bed raised and to wear a corset to control swelling.  CSF leaks can also be sealed in a re-operation. A minority of our members have experienced a post-operative CSF leak.

Only one member sustained a serious infection--bacterial meningitis--from a Tarlov cyst operation. The most common negative outcome is the failure of the operation to eliminate the symptoms, and it is not rare for the surgery to worsen an existing symptom or cause a new one.

Therefore, it is strongly advised to join our TarlovTalk forum, read previous messages to learn about the experience of members who had surgery at different hospitals, and review the results of the current Tarlov Cyst Operations Survey that was launched in January 2005.  It is necessary to join the group in order to have access to all surveys.

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There is still not much that is standard about Tarlov cyst treatment, and there is great variation between cysts, operations, patients and surgeons. Your surgeon or neuroradiologist will be give instructions for the post-operative period.

However, Tarlov cyst treatments are only recently becoming somewhat more common, so that only a few providers have much experience on the basis of which to determine restrictions on activity post Tarlov cyst intervention.

Tarlov cyst surgery patients sometimes receive standard spine surgery instructions, similar to those given for patients who have had herniated disc surgery. Although herniated discs can produce the same symptoms, intervertebral discs are not composed of such delicate tissue as Tarlov cysts. One surgeon said that Tarlov cyst surgery can be "like operating on a wet paper towel." 

Surgeons do not agree on the need for very restrictive post-FGI instructions. Some patients, however, regret not being more careful. One member writes:

"Take it VERY easy for 6 weeks post FGI; then do NOT exercise or stretch. I was doing very well post FGI. At 6 weeks I decided to “get back in shape” and started gently exercising and stretching. Big mistake. I have to have the FGI redone on that side as well as having a FGI on my 3rd TC, that was not done last time" 

Here is an example of a post-operative regimen that was more limiting than usual because the patient required a second operation to repair a CSF leak. 

1. I was not allowed to do anything physical except shower and potty.

2. I stayed in bed for 2 weeks on pain meds and continued recovery.

3. I started 5 minute walks on flat ground after full 4 weeks of inactivity (2 wks in hospital and 2 weeks at home).

4. No STAIRS, LIFTING, DRIVING, CLEANING, etc. for 6 weeks post- op.

5. I had the 6-week post-op MRI and was given the green light to use stairs and to drive. Still no lifting.

Tarlov disease often leads to retention, chronic subacute urinary tract infection (UTI) and other bladder problems, including interstitial cystitis, with or without felt symptoms. Symptoms might be falsely ascribed to age, gender (in the case of women), or other causes, rather than to Tarlov cysts.

Individuals with these Tarlov disease symptoms are often informed that their urine tests are negative for UTI. However, this means that the sample is negative for acute infection. It is suggested to ask if the test is positive for subclinical infection. Tarlov cyst suffers with chronic subclinical UTI and cystitis are also vulnerable to discomfort from diets that create urine that is either too acid or too alkaline. In this case, a pH-balanced diet be helpful. This topic is discussed in the TarlovAlt Forum.

If you have one or more Tarlov cysts, one important question is, "Do I have a neurogenic bladder,"  that is, a bladder that is functioning improperly because of a sacral nerve disorder. Another important question is, "Do I have interstitial cystitis (IC)?" It possible that you need treatment for both Tarlov cysts and bladder disorders that are related to Tarlov cysts. 

For information on interstitial cystitis, read A Physician in Pain, then browse to the Web site of the Interstitial Cystitis Association: www.echelp.org.

Click here for a list of dietary irritants to the urinary tract.

What tests will the urologist do?

Urodynamics and cystoscopy might be used in an evaluation for neurogenic bladder.  In one component of this testing, the bladder is filled with water through a catheter and the responses noted. Signs of sacral nerve dysfunction shown in this test include: 1) a delay in the "go" sensation, resulting in abnormally high bladder volume and 2) reduced compliance, that is, the bladder does not expand in proportion to the increased volume of liquid, resulting in abnormally high bladder pressure. 

In cystoscopy: a tube with a miniature video camera is inserted into the bladder via the urethra. 

A third possible test would be a kidney ultrasound to see if urine is backing up into the kidneys. The ultrasound is not uncomfortable and the others tests entail only mild discomfort.

If urological test results are consistent with sacral nerve defect, then you could have an urgent need for treatment for Tarlov disease. Urologists who test for neurogenic bladder understand that a neurogenic bladder is caused by a spinal injury or disorder, so in the absence of any other such injury or disorder, the finding of neurogenic disorder by a urologist is close to a "laboratory test" for Tarlov disease. 

If you are suffering from neurogenic bladder, self-catheterization will give temporary relief while you await treatment for the primary cause by a specialist in Tarlov disease. Members who have relied on self-catheterization say that, once the initial reluctance is overcome, it is not as difficult as one might imagine.

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What tests do neurosurgeons use?

Tarlov cysts are usually discovered when MRI's are performed for patients with low back pain or sciatica. As part of the work-up for surgery, some neurosurgeons prescribe CT-myelogram, or, infrequently, EMG.

The CT-myelogram involves a lumbar puncture to inject dye. Images are taken at intervals to ascertain the rate at which the cyst fills with spinal fluid. You might or might not have a headache for a day or two afterward the lumbar puncture. There are lumbar punctures in which the patient feels virtually no pain, and there are lumbar punctures in which the pain is excruciating. Obviously it is preferable to have the puncture performed by an expert who is known for precise and painless punctures. 

Gad or Gadolinium is a chemical injected into the bloodstream to help enhance or show structures with MRI. This kind of injection usually reserved for post-operative scanning. 

EMG stands for Electromyogram which loosely translated means electrical testing of muscles, but in fact has come to mean electrical testing of nerves and muscles.  On the one hand an EMG can find nerve weakness referable to a Tarlov cyst; on the other hand the absence of such a finding by EMG is not a basis for concluding that the cyst is asymptomatic. 

If you receive an an order for a diagnostic radiological procedure from an out-of-town specialist, the protocol is as follows (the applies at least to the United States): you pass the order to your primary care physician.  He orders the procedure (ask your physician to attach the order of the out-of-town specialist to his own order, and make sure that the radiology lab and the technician sees the specialist's order). Your PCP's nurse should phone the radiology lab to schedule the procedure and inform you of the appointment details.

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How about exercise, physical therapy or TENS?

It is not possible to "work out" Tarlov cyst symptoms through exercise. Many exercises that are commonly therapeutic for back and leg pain worsen Tarlov cyst symptoms. One member finds it helps to avoid twisting the body. Another members cautions:

"I had physical therapy and it made things much worse -- more pain.  I then had acupuncture (with electricity in the needles) and went through 12 hours of the most intense pain I've ever known.  I had an MRI done before acupuncture and after (just a coincidence) it seems the acupuncture caused hemorrhaging in my spine." 

On the other hand, the right kind of physical therapy can bring substantial relief. Follow this link to an example

Deep tissue massage by a friend, loved one or professional can bring substantial if temporary relief from pain caused by Tarlov cysts, such as in the sacral area, hips and thighs where sore points are formed.

A therapist might not know how sensitive the surgical site is after a Tarlov cyst operation (much more sensitive than after disc surgery, for example). Therapists must be instructed  not to work in such as way as to cause vibrations or rapid motion in the surgical site. Failure to heed these precautions can result in a severe flare. If acupuncture is prescribed, seek an acupuncturist who is a pain specialist. There is no inherent danger in needling around the surgical scar as it begins to heal. 

Public hot tubs and spas (unlike swimming pools) are inherently dangerous even when one is in perfect health. However, if you have your own spa, its use could reduce stress, pain, and the need for pain medication. Use at moderate water temperatures and keep the surgical site away from any but the mildest jets. 

Your therapist or doctor might prescribe a TENS unit, that interrupts pain signals to the brain with electrical stimulation.  Placing electrodes too close to the spine can produce headaches. One of our members reports, 

"...four pads are placed around the painful area in an X fashion. This has helped with the buttock pain for me. I do have to be careful not to place the electrodes directly over the Tarlov cyst--this increases the pain."  Another member finds that she can get by with using narcotic medication for flares only, by the regular use of low-intensity TENS with an anticonvulsant such as Neurontin or Keppra." 

Anecdotal evidence suggests that a person who has a Tarlov cyst, operated on or not, should avoid heavy lifting, falls, accidents, and straining.  Each person needs to find the most suitable kinds and amounts of activities within the guidelines given by his physician. 

Avoiding chronic or acute exacerbations could require changes in habits and lifestyles. Favorite sports, exercises and recreational activities may need to be surrendered.

If severe symptoms do arise, it could be necessary to drastically limit everyday activities such as sitting, standing and walking.  Unless one has successful treatment, these limitations could require changes in career plan, occupation, and in working and living environments. Follow link to patient comment. 

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What medications are used for Tarlov cysts?

The state-of-the-art in pain management is polypharmacy: using more than one class of drugs in order to block different pathways. For mild Tarlov cyst pain, pain management specialists often start the patient on an anticonvulsant (such as Neurontin) and an antidepressant that has pain relieving properties (not the powerful psychotropic drugs). Patients differ greatly with regard to their tolerance of the side-effects, particularly of the anticonvulsants and antidepressants.

A gradual, trial-and-error approach, carried out in complete compliance with only one prescriber, is required for safe and effective polypharmacy. Some drugs such as Neurontin (gabapentin) must be stopped by a progressive reduction in dosage over time in order to avoid side-effects, including potentially severe psychological disturbance.

If non-narcotic medications are not sufficient, a narcotic may be added for chronic moderate to severe Tarlov cyst pain. Morphine sulfate is one of the most commonly prescribed. Typically the patient is started on immediate-release tablets until the dose level is established. An extended-release tablet is then prescribed for round-the-clock pain relief; a proactive approach is more effective than waiting for the pain to become unbearable and then medicating reactively. 

Read this comment on narcotics dosage  by a physician with Tarlov disease.

When one is in great pain and effective pain management is lacking, the temptation will be to accept the first offer of treatment, and that first offer could very well be one that you would decline if you were not experiencing excruciating pain. Therefore, it is suggested to:

1. first obtain a high-level diagnosis, and, if that supports the use of opiates,

2. seek state-of-the-art pain management, and;

3. only when your pain is well-controlled, use all the resources available to investigate and make decisions with regard to the options for obtaining permanent relief.

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Do Tarlov cysts cause bowel problems?

60% of those with Tarlov cysts have bowel problems Tarlov cysts can affect nerves that control elimination, resulting in fecal incontinence (14%) or constipation (44%).  For constipation, some Tarlov cyst patents make dietary changes and a daily supplement such as Miralax.

Constipation increases the pressure of spinal fluid on nerves inside the cyst, and  Tarlov cyst sufferers  say that constipation greatly increases their pain levels. On the other hand, straining at the toilet when constipated causes symptomatic Tarlov cysts to expand,  stretching and irritating nerves in the cyst wall, leading to a flare in symptoms.  In one case, a member suffered a a complete relapse three years after successful Tarlov cyst surgery by only one instance of "straining like crazy" to pass a hard stool.

Intestinal motility is decreased and bowel and sphincter sensations may are dulled as a side-effect of the surgery or as a symptom of ongoing nerve compression.

It is therefore suggested to moderate the ingestion of foods that cause constipation and to add foods that moisturize the bowels. However, if motility is insufficient, moisturizing and lubricating the bowels orally or by suppository may well not be sufficient.   Although the regular use of laxatives, suppositories and enemas may be discouraged in general, they may be very useful and even necessary in the case of a person suffering from Tarlov cysts and using opioid medications.

Whether the problem is constipation or incontinence, bowel problems resulting from Tarlov disease should not be ignored. They should be treated by your primary physician and, if the problems persist, by a bowel specialist.  

1. Foods that treat constipation

2. Psyllium seed powder, orange Metamucil or the straight stuff found at health food stores, or similar products found in your part of the world.  Use only if you will increase your water intake accordingly, and if you have sufficient motility, or these products will worsen rather than help constipation.

4. Local fruits Have a large bowl of fruit for breakfast every morning. 

5. Suppositories

6. Enemas  Rather than irritating or damaging a nerve by straining at a hard stool, take an enema in a position that can be comfortably assumed without causing pain.  Rectal douching Water under light pressure is forced around and above the obstruction by a professional using special equipment, or by one's self using an ordinary shower hose.

7. Traditional diets  See Weston A. Price Foundation

8. Pharmaceutical products

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Can Tarlov Disease cause death?

We have no knowledge of any deaths from the disease itself.

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 Copyright 2006 Tarlov Cyst Association. All rights reserved.