I insist! My pelvic pain is my Tarlov cyst!!

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By Elizabeth Akincilar-Rummer

 

For the average person, the words Tarlov cyst mean absolutely nothing. For the average medical professional, they mean little to nothing. So why are we devoting an entire blog post to these cysts that no one seems to care about? Full disclosure, personally, I was curious what the literature had to offer on Tarlov cysts since recently, I’ve had several patients that have been diagnosed with them and I didn’t have much education to offer. Furthermore, these patients have had a very difficult time getting straight answers on whether to treat them or not, and if so, how to treat them. I wanted to see why most medical providers considered Tarlov cysts an insignificant finding and why so few medical providers were willing to discuss possible treatments options for Tarlov cysts.

 

Well, I think I found out why. There is a giant hole in the literature about Tarlov cysts. For something that was first discovered over 75 years ago, there is very little research about Tarlov cysts. Even more disappointing, the research that does exist, does not offer very encouraging treatment options.

 

Tarlov cysts, aka perineural cysts, were first identified in 1938 by Isadore Max Tarlov, MD. They are unique cysts of the nerve root sleeve that abnormally collect cerebrospinal fluid (CSF) between the perineurium and endoneurium. Basically, the fluid in our spinal cord (CSF) builds up in and around a nerve root creating a ball of fluid, or cyst. They can vary in size from 5 mm to >10 cm and can be found anywhere along the spine where there are nerve roots, but they are most prevalent and largest in the sacral region, or at the base of the spine.

 

The incidence in the adult population is reported to be 4.6%-9%, with a female to male ratio of 1.78.1 Why they occur is still unknown, yet there are several hypotheses, including ischemic degeneration, inflammation or hemorrhage, congenital occurrence, trauma, and genetic inheritance. They are found more frequently in patients with underlying connective tissue disorders such as Ehlers-Danlos and Marfan syndrome.

 

Symptoms associated with Tarlov cysts include sciatic or sacral radiculopathy (pain, tingling, numbness, and/or weakness in the lower extremities), sacrococcygeal and perineal pain, pain with intercourse, abdominal pain, headaches, lower extremity and saddle sensory or motor deficits, urinary or anal sphincter dysfunction and occasional sexual impotence. The symptoms are often exacerbated by sitting, walking, transitioning from laying down to standing, and Valsalva maneuvers such as sneezing or straining to defecate.

 

One study looked at 157 patients with symptomatic Tarlov cysts that showed 95% also had lumbar and/or sacral disc herniation, mild depression, and an average VAS (visual analog scale of pain) of 4.7/10.4

 

They are most commonly identified upon lumbosacral MRI but can also be seen on CT myelography. A CT myelography is an x-ray of the spinal canal that images an area that has been injected with a contrast agent. Most Tarlov cysts are discovered as an incidental finding when looking for something else in the area. It is fairly uncommon that imaging of the lumbosacral region is done for the sole purpose of identifying Tarlov cysts. This MRI shows a large Tarlov cyst in the sacrum.

 

 

Asymptomatic Tarlov cysts do not require treatment and most are asymptomatic. In fact, studies show that less than 1% of perineural cysts are indeed symptomatic.1 For those that are symptomatic, optimal treatment is yet to be determined. In general, surgical intervention is not recommended. Conservative therapies are often recommended as a first line treatment. This includes physical therapy and analgesic steroid or nonsteroid anti-inflammatory medication. Other nonoperative treatments include lumbar CSF drainage and CT guided cyst aspiration followed by injection of fibrin glue. However, both of these interventions do not prevent recurrence. In fact, aspiration alone has a very high recurrence rate, reported to be within weeks or days after aspiration. Additionally, fibrin glue has been shown to be associated with aseptic meningitis. Therefore, neither of these treatment options are really viable.

 

Unfortunately, surgical treatment options don’t reveal much more promising outcomes. Neurosurgical treatments include simple decompressive laminectomy, cyst and/or nerve root excision, and microsurgical cyst fenestration (draining and shunting of the cyst) and imbrication (closing of the wound). The reported rates of symptomatic improvement after various surgical interventions range from 38%-100%. However, these studies included few patients which makes it very difficult to determine which surgical techniques are best.

 

The suggested criteria to even consider a surgical intervention for Tarlov cysts include a cyst diagnosed by imaging, symptoms consistent with a cyst including radicular pain and lumbosacral pain, cyst diameter >1-1.5 cm, unendurable pain, bladder/bowel dysfunction, and no contraindications for surgery.2 Positive surgical results are predicted by younger patient age, fewer cysts, and shorter symptoms duration at the time of presentation. Unfortunately, surgical complications are numerous. They include perineal sensory loss, incontinence, CSF leak, increased pain, infection, and intracranial hypotension. One study compared the results of surgical and conservative treatments for Tarlov cysts and didn’t find any significant difference in an improvement of symptoms. They recommended surgery only for patients with a short history and neurological deficit.3

 

With regards to pelvic pain specifically, there is virtually nothing in the literature. There are two studies that discuss specific pelvic pain conditions and Tarlov cysts. The first study looked at 18 women with Persistent Genital Arousal Disorder (PGAD). They examined MRIs of their lumbosacral region and found Tarlov cysts in 12 of the women. These findings suggest that Tarlov cysts should at least be considered as a possible contributor to PGAD.5 The other study was a case series in which they looked at two patients that had interstitial cystitis symptoms and Tarlov cysts. These two patients reported nearly 100% pain relief with caudal epidural steroid injections.6 However, one would never draw any conclusions from a two patient case series and, as seen in other studies, steroid injections have been shown to have a very temporary, if any, positive effect on the symptoms of Tarlov cysts.

 

Where does this leave us? What is someone to do if diagnosed with a Tarlov cyst? I would highly recommend NOT scouring the internet and looking to Dr. Google for answers. There is A LOT of questionable information online about how to treat Tarlov cysts most effectively. The Tarlov Cyst Foundation is a good place to start educating yourself about Tarlov cysts. This organization was started by a woman who was diagnosed with Tarlov cysts. It is a volunteer-based, 501(c)(3) non-profit foundation dedicated to the research, improved diagnosis and development of successful treatments and outcomes for symptomatic Tarlov cysts. It is the only organization in the world that solely focuses on Tarlov cysts.

 

As far as treatment goes, as the literature suggests, starting with conservative treatment is preferable. That typically means physical therapy. Although physical therapy is not going to eradicate or change the cyst itself, it can lessen some of the symptoms caused by a Tarlov cyst. As we learned above, Tarlov cysts can become symptomatic if they compress a nerve root. Pelvic floor physical therapy can lessen muscle tension and increase tissue mobility in the muscle and tissue superficial to the cyst that will increase blood flow and decrease compression on the nerve being compressed which could decrease pain. To do this, physical therapists utilize various manual therapy techniques such as soft tissue manipulation, joint manipulation, and dry needling. For a more in depth description of pelvic floor physical therapy, check out our book, Pelvic Pain Explained. In addition to manual therapy, physical therapists can also make recommendations for exercise, behavior modifications, and/or assistive devices, such as seat cushions, that may lessen pain with sitting. In a previous blog post, Our Fave Products for the Pelvic Floor Rehab Toolkit, we include a list of our favorite cushions and where to find them.
I can’t say that my curiosity about Tarlov cysts have completely been satisfied, but I now have a better understanding to why there is little consensus regarding the treatment for Tarlov cysts. The medical community has yet to find an effective treatment strategy for these patients suffering from debilitating pain.   Even though symptomatic Tarlov cysts seem to affect a very small percentage of the population, they deserve the opportunity to reduce their pain and improve their quality of life with an effective treatment. I’m hopeful that research will continue and surgical techniques will improve that will improve outcomes for people suffering from symptomatic Tarlov cysts.

 

 

References:

 

  1. Singh et al: J Spinal cord Med, 2009
  2. Xeusheng Zheng et al. World Neurosurgery; 2016.
  3. Kuntz et al Eur Spine: 1999
  4. Marino et al: Neurol Sci: 2013
  5. Komisaruk BR: Journal of Sexual Medicine: 2012
  6. Freidenstein J et al: Pain Physician: 2012

7 thoughts on “I insist! My pelvic pain is my Tarlov cyst!!

  1. I had a patient who is convinced her pain is tarlovs cyst. Funny you posted this, because this week she is flying to Texas to have the surgery done by one of the few surgeons in the US who does it,

    They did a sacral block as part of a diagnostic. She responded well so was considered a good candidate for surgery

    • Author Liz Akincilar says:

      Hi Karen,

      Thank you for your comment. I am quite familiar with that MD in Texas. He does have a good reputation and seems very knowledgeable with regards to Tarlov’s cysts. That’s who I refer to when I have a patient with a Tarlov cyst. Hopefully she has a good outcome!

      Best,

      Liz

  2. Thank you for this comprehensive article. I have a number of Tarlov cysts in my sacrum and sacral canal erosion from the cysts.I was diagnosed with interstitial cystitis 17 years ago. I managed my IC well with diet and bladder installs until 2013 I had my first severe bladder flare for 8 months. Was considering removing my bladder it was so bad. It resolved but 9 months later developed pudendal neuralgia which was debilitating.(diagnosed by Dr. Hibner in Phoenix). I consulted via phone with Dr. Donlin Long (MD) and Dr. Feigenbaum (Dallas) the experts on TC’s. They both concurred my symptoms could be from the cysts, but there were no guarantees as you described on the outcome of surgery. I have improved from being in bed 24/7 over the last two years but the most persistent issue I still have is rectal pain and pressure especially on sitting. I still have IC which fluctuates and more bouts of leaking. I still take less than 1 mg. of Dilaudid every 3-4 days at night. I’m at an impasse at this point pretty much stuck but have more quality of life than before. The TC;s could be the source of the PN but I won’t take the chance of surgery. I have to be careful of any pressure on my sacrum which flares it all up. Can you suggest any PT or therapies you feel would be helpful? Sorry for this lengthy post!

    • Author Liz Akincilar says:

      Hi Amy,

      I’m sorry you’ve been struggling with pelvic pain for so long. I can understand your hesitation with the surgery. If you have not tried pelvic floor physical therapy, I would definitely give it a shot. It will not change the cysts, but it could alleviate some of your pain which could improve your overall quality of life. You can find a pelvic floor physical therapist in your area on these websites:
      http://www.womenshealthapta.org/pt-locator/
      https://hermanwallace.com/practitioner-directory
      I hope this helps.

      Best,

      Liz

  3. This is hands down one of the best articles I’ve read regarding Tarlov cysts. I had surgery 3 months ago and have seen significant improvement in my pain and functionality. Thank you for taking an interest! We need more doctors and medical professionals to get educated on this life altering disease.

  4. I do not find the statistic on the percentage of TCs that cause pain to be credible, since the overwhelming majority is Doctors dismiss them an incidental. I did not even know I had one when the results ic my first MRI came back because my doctor didn’t tell me. I only found out when persistant pain drove mr back to a different doctor in another city 7 years later, and by that time there were more. A retrospective be study of MRIs from patients with chronic low back pain might be very revealing.

    • Author Liz Akincilar says:

      Hi Sandi,

      Thank you for your comment. The statistic that I quoted came from a study that was published in a medical journal where they examined people with Tarlov cysts and documented their pain complaints. I agree with you, there is no doubt that more research needs to be done to either confirm or challenge that statistic.

      Best,

      Liz

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