Tarlov cysts, also known as perineural or sacral nerve root cysts, are dilations of the nerve root sheaths filled with cerebrospinal fluid (CSF). These cysts can cause a progressively painful radiculopathy (nerve pain), most prevalently at the S2, S3 level of the sacrum. While the exact cause of Tarlov cysts remains unknown, several theories exist, including a weakness in the meninges (covering of the brain and spinal cord) or a weakness present at birth. Some individuals with Tarlov cysts also have connective tissue disorders.
Understanding Tarlov Cysts
A Tarlov cyst is a dilation of the nerve root sheath or outer covering of the nerve. Cerebral spinal fluid gets trapped inside the sheath and forms a cyst. The fluid in the cyst can put pressure on the nerve inside and on the adjacent nerve roots and cause debilitating symptoms. They can occur anywhere along the spine where there are nerve roots. They are most prevalent in the sacrum or base of the spine.
Tarlov Cysts were first identified in medical literature in 1938 and is now recognized with NORD, national organization of rare disorders. Not much is known about the cause, not much is offered in the way of treatment. As more and more people are diagnosed each year, patients are divided up into two categories. Those who have symptoms and those who do not. One theory is that these cysts develop anywhere along the spine (cervical, thoracic, lumbar/sacral) secondary to trauma, trauma causing cerebral spinal fluid leaks, or inflammatory process within the nerve root sheath.
The Role of Diet in Managing Tarlov Cyst Symptoms
While there is no specific diet that has been proven to cure or prevent Tarlov cysts, making certain dietary changes can help manage your symptoms and improve your overall health. These recommendations focus on reducing inflammation, supporting nerve health, and preventing constipation, which can exacerbate symptoms.
Anti-Inflammatory Diet
An anti-inflammatory diet may be beneficial in managing Tarlov cyst symptoms.
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Foods to Consider
- Increase Fluid Intake: Adequate hydration is crucial for overall health and can help prevent constipation.
- Add Fiber: Increasing fiber intake can help prevent constipation, which is very important to prevent straining and causing more pressure on the cysts in the sacral area.
- Supplements: Consider supplements to ensure you get the necessary nutrients, especially when pain affects your appetite.
Foods to Avoid
Using diet or dietary supplements to decrease the body’s alkalinity may prevent perineural cysts from filling with more fluid.
Avoiding Constipation
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.
Additional Considerations
- Individualized Approach: It is important to communicate with your physician to let them know if you are experiencing changes in bowel or bladder function. 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.
- Walking: Walking is amazing. Which was hard for me to accept. I used to be a runner. Not so much anymore. But who knows? Maybe one day? Its a goal for sure. I am grateful that I can still move and be who I am most days. I know others are suffering more and are no longer able to ambulate without the use of crutches, canes, or even wheelchair. Some are experiencing bone loss of the vertebrae due to long term pressure from the cysts.
Conventional Treatments for Tarlov Cysts
Most Tarlov cysts are discovered on MRI, CT or Myelogram. The best images of Tarlov cysts are seen on magnetic resonance images (MRI). 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. 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).
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. 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. 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.
Pain Management
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. 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.
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Aspiration and Fibrin Glue Injection
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.
Transcutaneous Electrical Nerve Stimulation (TENS)
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.
Surgical Options
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.
Lifestyle Adjustments
In order to experience positive results, it is also important for patients to make any necessary lifestyle changes that are recommended by their neurosurgeon. This includes maintaining a healthy weight, obtaining proper nutrition, and walking daily (as tolerable).
Physical Therapy Considerations
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. 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 .
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Support System
Patients are advised to follow post-operative instructions and maintain a good support system of family and friends after surgery.
Belonging to a group of TC suffers helps me to keep things in perspective and for that I’m grateful for as well. We support each other and offer ideas and suggestions of what works and what doesn’t in an effort to help each other. If you have TCD and don’t belong to a group, I highly suggest it. Suffering from this condition can make one feel very alone. Friends and family can struggle to really understand what you go through. So join a group! You won’t regret it.