Understanding Tarlov Cyst Disease: Symptoms and Treatments

If you’ve been diagnosed with tarlov cyst disease, you might feel lost about what to do next.

If doctors haven’t found anything yet, you might want to learn about Tarlov cyst disease. This condition is often missed and misunderstood. It can hide in plain sight, causing serious discomfort that patients suffer through for years.

In this blog, we will break down Tarlov cyst disease in the simplest way possible. You’ll understand what it is, why it happens, how it feels, how it’s diagnosed, and what treatments are available. Let’s get started.

What is Tarlov Cyst Disease?

Tarlov cyst disease happens when small fluid-filled sacs, known as Tarlov cysts, grow on the nerves in the lower spine. These sacs are filled with cerebrospinal fluid cysts and can press on nearby nerves, causing pain and other problems.

How do Tarlov cysts form in the spine?

These cysts usually form at the base of the spine, near the sacral nerves. Over time, spinal fluid builds up inside these cysts, causing them to grow.

• Pressure builds up in the nerve root sleeves.
• Small tears allow fluid to leak and form cysts.
• The cysts slowly enlarge, pressing on nerves.

As the cysts grow, they can cause nerve compression from cyst, leading to pain and numbness. The cysts are mostly found in women between 30 and 60 years old.

Are Tarlov cysts considered rare or underdiagnosed?

While not truly rare, they are often underdiagnosed. According to NIH, they appear in 4.6% of spinal MRIs, but only about 1% of them cause symptoms.

• Many people have cysts and never know.
• Doctors sometimes miss them during diagnosis.
• Pain is often blamed on other spine issues.

This delay in diagnosis is why Tarlov cyst disease is still not fully understood in many hospitals.

Is Tarlov cyst disease the same as having a spinal cyst?

Not exactly. While it falls under spinal cysts vs tumors, Tarlov cyst disease is different. These cysts are located specifically in the sacral area (base) and are filled with spinal fluid. They are not tumors, and they do not turn into cancer.

What are the Common Symptoms of Tarlov Cyst Disease?

Some people have Tarlov cysts but never feel any symptoms. Others can suffer a lot. Let’s look at what signs to watch for.

Can Tarlov cysts cause nerve pain or sciatica-like symptoms?

Yes. One of the most common signs of Tarlov cyst disease is pain that feels like sciatica.

• Burning or shooting pain in legs
• Pain in buttocks or lower back
• Pain that worsens with sitting

This pain happens due to nerve root cyst symptoms, where the cyst pushes against nerves.

What unusual sensations should not be ignored?

Besides pain, people also feel odd sensations that don’t go away. These are important warning signs:

• Tingling or numbness in feet, legs, or pelvic area
• Sensation of “pins and needles”
• Feeling like your legs are weak

This is caused by pain from spinal cysts pressing on sensitive nerve roots.

How long do symptoms of Tarlov cyst disease last?

They can last for years. Many patients report having symptoms for over 5 years before a proper diagnosis. Common patient-reported symptoms include:

• Lower back pain
• Pelvic pain
• Pain while sitting
• Numbness or tingling
• Loss of bladder or bowel control (in severe cases)

According to studies, most diagnoses happen after years of chronic pain and confusion.

Read: Benefits of Interventional Pain Treatments for Chronic Pain Sufferers

Causes of Tarlov Cyst Disease

The cause of Tarlov cysts is not fully known yet. But, experts think a few things might lead to them. These fluid-filled sacs form near the nerve roots of the spine, mostly in the sacral area.

Developmental Variations

One idea is that Tarlov cysts can come from a birth defect. This could make a strange connection between the sac of cerebrospinal fluid and the nerve area. As a result, fluid leaks and cysts can form.

Trauma and Injury

Another cause could be injury to the back. People have seen Tarlov cysts show symptoms after accidents or heavy lifting. This heavy stress can break the nerve sheath, causing fluid buildup and cyst growth.

Connective Tissue Disorders

People with certain health conditions might be more likely to get Tarlov cysts. Conditions like Marfan or Ehlers-Danlos syndrome might make the tissue around your spine weaker. This could help in the cyst formation process.

Incidence and Prevalence of Tarlov Cyst Disease

Tarlov cyst disease affects many people. It can be hard to know exactly how many. Studies show that small, symptom-free Tarlov cysts are in 5 to 9 percent of the group. But, large cysts that cause problems are not common.

A recent study looked into who gets Tarlov cysts. It found that 86.6 percent of those with Tarlov cysts were women. Only 13.4 percent were men. Most were between 31 and 60 years old, making up 80.4 percent of the group.

The study also looked at how bad the symptoms were. Only 3 percent had no pain. Meanwhile, 4.2 percent felt their pain was very mild. But, 38.6 percent said their pain was severe. And 15.1 percent found it to be very severe.

Overall, between 4.6 to 9 percent of adults may have Tarlov cysts. Women seem to get them more than men. But, we’re not sure how many people have severe symptoms. This is because it is often missed by doctors.

How is Tarlov Cyst Disease Diagnosed?

Figuring out if you have Tarlov cysts is key to getting the right treatment. Your doctor might guess you have them after talking about your symptoms and checking you carefully. They’d then order special tests to be sure.

Imaging Tests

An MRI or a CT scan can show if you have these cysts. These scans let the doctor see the cysts, how big they are, and where they are. A myelogram, using a contrast dye, x-rays, and CT, shows a detailed image where these cysts grow.

Neurological Examination

Your doctor will check your nerves to see if the cysts are causing problems. They’ll look at your response to touch, your reflexes, and your muscle strength. This test helps pinpoint which nerves are affected by the cysts. It also helps plan what additional tests you might need.

Urological Tests

If your cysts are causing bladder or bowel issues, you might need more tests. These tests check how well your bladder works, look inside your bladder and urethra, and inspect your kidneys.

“Many people live with undiagnosed Tarlov cyst disease for years. Proper neurological evaluation is key.” – Dr. Chandril Chugh

Non-Surgical Treatment Options

For people with Tarlov cysts, non-surgical methods might ease symptoms. They are best for those with small, less severe cysts or who can’t have surgery.

Pain Medication

Doctors might suggest NSAIDs to reduce nerve irritation and inflammation. These drugs are targeted specifically to relieve the pain from Tarlov cysts.

Nerve Stimulation

TENS, short for transcutaneous electrical nerve stimulation, is another option. It uses mild electrical signals on the skin to disrupt pain messages from the cysts.

Cyst Aspiration

Draining the cyst’s fluid might be advised by healthcare providers. This process, called cyst aspiration, locates the cyst with CT scans and then drains the fluid. But, it may not stop the cyst from refilling and causing issues again.

While these treatments can help with the pain temporarily, they aren’t a cure for the cyst itself. The outcomes from non-surgical methods can differ for each patient.

Read: 10 Tips for Managing Chronic Pain Naturally

Surgical Treatment for Tarlov Cyst Disease

Some people with Tarlov cysts might need surgery if other treatments don’t work. There are different types of surgery available. These surgeries aim to deal with Tarlov cyst symptoms.

Cyst Fenestration and Drainage

Cyst fenestration and drainage is a common procedure. It includes a surgery to expose the cyst’s location, usually in the spine. The doctor will open the cyst, remove its fluid, and close it back carefully.

This helps prevent the cyst from filling up again with cerebrospinal fluid.

Cyst Removal

Sometimes, the entire Tarlov cyst is taken out through surgery. The surgeon separates the cyst carefully from the surrounding nerves and tissues. This can stop the cyst from coming back.

Imbrication and Closure

Imbrication and closure is another surgery option. Here, the cyst’s cavity is filled with something like fat or glue. This stops it from refilling with fluid after it’s closed.

The choice of surgery depends on several factors. This includes how bad the condition is, nerve compression, cyst size, the person’s health, age, and more. A healthcare professional will guide you to the best surgery for your situation.

Complications and Risks

While Tarlov cyst surgery can help many, it comes with risks. The main issue is a CSF leak afterward. For this, some might need to rest in bed with it raised. They might also wear a corset. These can help a CSF leak to heal on its own sometimes.

CSF Leak

A CSF leak is the biggest risk after surgery for a Tarlov cyst. In good news, these leaks may fix themselves. Patients might need to lie down with their feet up and wear a corset to help reduce swelling.

Meningitis Risk

There is a slight chance of getting bacterial meningitis post-surgery. Doctors will closely watch and treat you to avoid this danger.

Persistent or Worsening Symptoms

Some patients won’t get the relief they hoped for even after surgery. Pain reduction is noted in some, but not everyone. The surgery might not completely stop the symptoms. It could make old symptoms worse or create new ones.

If you’re thinking about Tarlov cyst surgery, talking it out is vital. Make sure to discuss all the possible issues with your doctor. Understand your personal situation. This can help you make the best decision about your care.

How Does Tarlov Cyst Disease Affect Daily Life?

Tarlov cyst disease can affect your job, your social life, and even your sleep.

Can it lead to disability or affect mobility?

Yes, especially if the cyst presses on nerves.

• Trouble sitting for more than 20 minutes
• Weakness in legs or feet
• Use of walking aids like canes or braces

How does it impact mental health and quality of life?

Chronic pain often leads to stress, anxiety, and even depression.

• Patients report feeling unheard or misdiagnosed
• Pain interferes with family life and work
• Quality of life drops when symptoms are untreated

What workplace accommodations might be needed?

Adjusting work conditions can help you stay productive. Here’s a quick guide:

Prognosis and Outlook

The future for those with Tarlov cyst disease varies a lot. Different treatments work differently for each person. This means what helps one patient might not help another.

Some people get much better with surgery or other treatments. Yet, some might not see much improvement or find their issues getting worse. It’s quite individual.

The overall future for Tarlov cysts patients depends on many things. This includes the cysts’ size and where they are, how treatments work, and managing symptoms.

Regular check-ups and working closely with your healthcare team can help. They can improve how well you do and your life with the disease.

Even though outcomes can differ, there are chances for good results. For instance, surgery helps about 7 in 10 patients a lot. They see either complete symptom relief or a big change for the better.

These improvements can last for over two years. But, we still have much to learn about the disease’s long-term effects.

The future for those with Tarlov cyst disease is quite personal. It depends on each person’s unique situation.

Working closely with doctors to manage the disease is key. It can help improve your future and quality of life.

What Should You Ask Your Doctor If Diagnosed With Tarlov Cyst Disease?

Asking the right questions helps you understand your options better.

What does a personalized treatment plan look like?

• What stage is my cyst?
• Should I start with therapy or injections?
• What are the risks and benefits of surgery?

Should I get a second opinion or see a specialist?

Yes. Always consider seeing a neurologist or neurosurgeon who has treated Tarlov cyst disease.

If you or someone you love has symptoms that match Tarlov cyst disease and want a second opinion, don’t wait. Many people go years without answers. You deserve clear information, proper care, and real relief. Book your consultation with Dr. Chandril Chugh today.

Are there clinical trials or new therapies available?

Clinical trials are ongoing to explore less invasive options. Ask your doctor about:

• New pain medications
• Stem cell or regenerative therapy
• Minimally invasive surgical techniques

Patient advocacy groups like the Tarlov Cyst Foundation also offer updates and support.

Conclusion

Tarlov cyst disease is a complex problem that can really change your life. It can cause severe pain, trouble with movement, and other worrisome symptoms. Getting the right diagnosis and treatment is very important because the issue is often missed or mistaken for something else.

There are both non-surgical and surgical treatments for Tarlov cysts. How well these work can really be different from person to person. We still need more research to fully deal with this rare spinal disorder. But, by teaming up with your doctors, you can find ways to handle or even get better from your symptoms.

Tarlov cysts are quite common, affecting as many as 13.2% of people. They tend to affect more women than men. While the symptoms can be tough, it’s crucial to approach diagnosis and treatment in a thorough way. This is key to managing the situation.

Source Links

• https://www.aans.org/en/Patients/Neurosurgical-Conditions-and-Treatments/Tarlov-Cyst
• https://www.ninds.nih.gov/health-information/disorders/tarlov-cysts
• https://www.frankfeigenbaum.com/specialties/frequently-asked-questions-from-tarlov-patients
• https://rarediseases.org/rare-diseases/tarlov-cysts/
• https://feminapt.com/blog/tarlov-cyst-physical-therapy-and-treatment-options
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6989930/
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6150833/
• https://www.mdpi.com/2571-841X/5/2/12
• https://meassociation.org.uk/2020/12/the-me-association-me-cfs-research-round-up-4/
• https://www.ncbi.nlm.nih.gov/books/NBK582154/
• https://www.topdoctors.co.uk/medical-dictionary/tarlov-cyst
• https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5894475/
• https://link.springer.com/article/10.1007/s00234-023-03226-6