Also I have been having some swollen and painful joints and I am being tested for lupus and rheum arthritis. Hopefully I will get results this week but after reading some of the posts I am thinking maybe it is all related to the tarlov cyst. Of course I am being told that the cyst is not causing my pain that I have degenerative disc disease and permanent nerve damage.

Karen,

I do not think the Tarlov cyst has been associated with painful swollen joints. The painful swollen joints seem more like some form of arthritis. Just to let you know .... I had surgery on my Tarlov cyst at S2 in 2005. I did not have the results that others have had and do not recommend the surgery.

You will find that many neurosurgeons and orthopedic surgeons are quick to tell you that operating on the Tarlov cyst will not help you. Some people claim to be helped from their surgeries. I had a laminectomy at the same time as the surgery on the Tarlov cyst. I found no relief with the surgery. This is just my experience while others claim to be cured from the surgery....We all have different experiences and of course we all have very different problems. I have so much damage in my spine from arthritis that I think a simple surgery on the Tarlov cyst would never provide much relief for me. If this is the only problem you have with your spine it very well may be the cure for your problems, but it was not for me and for others who went this route.

I'm new to the site and would love to know if you had success with surgery? I have 3 small cysts on my sacral and would like to have them taken care of. I have bowel and bladder problems, some pain, and tingling in my toes. Thanks! Chris

I have had several back surgeries and am only 41. I have had laminectomy, disectomy and then had to have a csf leak repair surgery done. I have a lot of pain and am very discouraged with the physicians that I have seen so far. I have been in pain for several years since my last surgery and it has brought me to the point of perm nerve damage. None of the Dr's that I have seen really know about the TC and I keep being told that it is not the cause of my pain. If it is't that is great but what is. I was tested for autoimune disease and results came back negative.

Karen,

Can you post the results of your MRI or CT Scan? Where are your Tarlov cysts located? The problem with the Tarlov cyst is that most docs only know what they have read about them in a text book. For that reason they tell patients that they are not symptomatic. In most cases, they probably are not. If you do not have a communicating cyst it probably is not a source of your pain. Communicating meaning it fills and empties with fluid. You would only know that by going through testing at Hopkins. I think they are still doing testing for that at Hopkins.

Though I have not had a good outcome with the surgery for the TC I would not discourage anyone from moving forward with the surgery. I think Donlin Long at Hopkins is having the most success with his surgery and you would do best to contact him. I, at one time, told people to contact both him and Henderson at Georgetown, but I do not think Henderson is having the same success as Long. Of course, I have not been reading any data lately on the surgeries.....I have to go refresh and look at the data...
so you might want to look at both docs....

The problem with back surgeries is that they are only as good as the doctor performing them. I have been very fortunate in that I have had excellent surgeons. I used Dr. Fabien Bitan for my lumbar fusion, L1 to S1, and have had excellent results. I am also fused in the cervical spine and though I am now having problems with my cervical fusion, I have no regrets. Dr. Bitan did not do that fusion though he may do some corrections for me.....

You may be in pain because you have failed surgeries....

Chris,

What are the results of your MRI? If you are having bowel and bladder problems you should see a spinal surgeon stat, especially if you think they are related in any way to your spinal problems. You might be suffering from Cauda equina....




Gloria

Cauda equina syndrome caused by Tarlov's cysts--case report]

http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

[Article in Polish]

Nicpon KW, Lasek W, Chyczewska A.

Oddzialu Neurologiczno-Rehabilitacyjnego Szpitala Miejskiego w Bydgoszczy. nicpon@byd.top.pl


Perineural Tarlov cysts located on lumbo-sacral roots can be a cause of cauda equina syndrome. OBJECTIVES: 1) To draw attention to the fact that multiple Tarlov lumbo-sacral perineural cysts can produce serious movement disturbances. 2) To document the usefulness of the magnetic resonance imaging in noninvasive diagnosis of perineural cysts. CASE DESCRIPTION: A male patient, 80 years of age, suffered from progressive weakness of lower limbs, which caused an increasing drop of the feet. The disease began in August 2000, following a long journey by train. The patient additionally complained of urinary incontinence as result of sneezing, coughing or fast walking. The urologist did not find prostatic gland hypertrophy. An examination by the internist revealed atheromatous myocardiopathy in circulation failure stage. Magnetic resonance imaging showed multiple perineural cysts up to 15 mm in diameter on lumbo-sacral roots. This clinical picture, supported by the magnetic resonance imaging allowed to recognize cauda equina syndrome caused by Tarlov lumbo-sacral perineural cysts. DISCUSSION: This case is a reminder, that part of perineural cysts, particularly multiple, can be a cause of nerve roots injury, and their lumbo-sacral location can produce cauda equina syndrome. As reported by Zarski and Leo, Tarlov cysts were cause of 7.3% of pain syndrome cases 2 patients in the study group showed lower limb claudication. Magnetic resonance imaging of patients with back pain, performed by Paulsen, Call and Murtagh, revealed that Tarlov cysts occurred in 4.6% of patients, but only 1% had the symptoms connected with the presence of those cysts. In available Polish literature no report has been found referring to fixed cauda equina syndrome which was caused by multiple cysts revealed through the magnetic resonance imaging of spinal canal. Only Zarski and Leo, discussing the correlation between the clinical and radicographic picture, described transient cauda equina syndrome in two patients who, beside Tarlov cysts, were also found to have intervertebral lumbosacral disc herniation. Tarlov was the first to describe well documented cauda equina syndromes caused by cysts on the lumbo-sacral roots. It is necessary to emphasize the established role of magnetic resonance of spinal canal in the diagnosis of perineural cysts on the lumbo-sacral roots as well as other anatomical anomalies of cerebrospinal fluid spaces. Despite the fact that cauda equina syndrome in the case reported here was a serious complication of multiple Tarlov cysts in the lumbo-sacral region, a surgical treatment was not undertaken; in such cases this treatment should be the chosen procedure. CONCLUSION: Multiple perineural Tarlov cysts in lumbo-sacral region, without disc herniation or other cause of vertebral canal stenosis, can produce cauda equina syndrome.

Publication Types:
Case Reports

PMID: 12053609 [PubMed - indexed for MEDLINE]

Cauda Equina Syndrome (CES)

http://www.neurosurgerytoday.org/wha...howPrint=false

November, 2005

Low back pain affects millions of people every year, and in most cases, it improves without surgery. But severe back pain can be a symptom of a serious condition that is not well known and is often misdiagnosed. Cauda equina syndrome (CES) occurs when the nerve roots of the cauda equina are compressed and disrupt motor and sensory function to the lower extremities and bladder. Patients with this syndrome are often admitted to the hospital as a medical emergency. CES can lead to incontinence and even permanent paralysis.

The collection of nerves at the end of the spinal cord is known as the cauda equina, due to its resemblance to a horse's tail. The spinal cord ends at the upper portion of the lumbar (lower back) spine. The individual nerve roots at the end of the spinal cord that provide motor and sensory function to the legs and the bladder continue along in the spinal canal. The cauda equina is the continuation of these nerve roots in the lumbar region. These nerves send and receive messages to and from the lower limbs and pelvic organs.

Incidence

CES is not related to gender or race. It occurs primarily in adults, although trauma-related CES can affect people of all ages. CES affects a very small percentage of patients that have undergone surgery for lumbar herniated disc.

Causes

CES most commonly results from a massive herniated disc in the lumbar region. A single excessive strain or injury may cause a herniated disc. However, disc material degenerates naturally as you age, and the ligaments that hold it in place begin to weaken. As this degeneration progresses, a relatively minor strain or twisting movement can cause a disc to rupture.

The following are other potential causes of CES:
Spinal lesions and tumors
Spinal infections or inflammation
Lumbar spinal stenosis
Violent Injuries to the lower back (gunshots, falls, auto accidents)
Birth abnormalities
Spinal arteriovenous malformations (AVMs)
Spinal hemorrhages (subarachnoid, subdural, epidural)
Postoperative lumbar spine surgery complications
Spinal anesthesia



Symptoms and Diagnosis

CES symptoms mimic those of other conditions. Its symptoms may vary in intensity and evolve slowly over time. CES is accompanied by a range of symptoms, the severity of which depend on the degree of compression and the precise nerve roots that are being compressed. Besides a herniated disc, other conditions with similar symptoms to CES include peripheral nerve disorder, conus medullaris syndrome, spinal cord compression, and irritation or compression of the nerves after they exit the spinal column and travel through the pelvis, a condition known as lumbosacral plexopathy.

Patients with back pain should be aware of the following "red flag" symptoms that may indicate CES:

Severe low back pain
Motor weakness, sensory loss, or pain in one, or more commonly both legs
Saddle anesthesia (unable to feel anything in the body areas that sit on a saddle)
Recent onset of bladder dysfunction (such as urinary retention or incontinence)
Recent onset of bowel incontinence
Sensory abnormalities in the bladder or rectum
Recent onset of sexual dysfunction
A loss of reflexes in the extremities

Medical history implications:

Recent violent injury to the back
Recent lumbar spine surgery
A history of cancer
Recent severe infection
The following tests may be helpful in diagnosing CES:

Magnetic resonance imaging (MRI): A diagnostic test that produces three-dimensional images of body structures using magnetic fields and computer technology. MRI produces images of the spinal cord, nerve roots, and surrounding areas.


Myleogram: An x-ray of the spinal canal following injection of a contrast material into the surrounding cerebrospinal fluid spaces; can show displacement on the spinal cord or spinal nerves due to herniated discs, bone spurs, tumors, etc.

Treatment

Once the diagnosis of CES is made, and the etiology established, urgent surgery is usually the treatment of choice. The goal is to reverse the symptoms of neural dysfunction. Left untreated, CES can result in permanent paralysis and incontinence.

Those experiencing any of the red flag symptoms should consult a neurosurgeon as soon as possible. Prompt surgery is the best treatment for patients with CES. Treating patients within 48 hours after the onset of the syndrome provides a significant advantage in improving sensory and motor deficits as well as urinary and rectal function. But even patients who undergo surgery after the 48-hour ideal timeframe may experience considerable improvement.

Although short-term recovery of bladder function may lag behind reversal of lower extremity motor deficits, the function may continue to improve years after surgery. Following surgery, drug therapy coupled with intermittent self-catheterization can help lead to slow, but steady recovery of bladder and bowel function.

Coping with CES

CES can affect people both physically and emotionally, in particular if it is chronic. People with CES may no longer be able to work, either because of severe pain, socially unacceptable incontinence problems, motor weakness and sensory loss, or a combination of these problems.

Loss of bladder and bowel control can be extremely distressing and have a highly negative impact on social life, work and relationships. Patients with CES may develop frequent urinary infections. Sexual dysfunction can be devastating to the patient and his/her partner and may lead to relationship difficulties and depression.

Severe nerve-type (neurogenic) pain may require prescription pain medication with side effects that may cause further problems. If the pain is chronic, it may become "centralized" and radiate to other areas of the body. Neurogenic pain tends to be worse at night and may interfere with sleep. This type of pain tends to produce a burning feeling that can become constant and unbearable. Sensory loss may range from pins and needles to complete numbness, and may affect the bladder, bowel and genital areas. Weakness is usually in the legs and may contribute to problems walking.

It is essential that people with CES receive emotional support from a network of friends and family members, if possible. It is important to work closely with your physician on medication and pain management. There are several medications prescribed to address pain, bladder and bowel problems. In addition, some patients find that physical therapy and psychological counseling help them cope with CES.

Hi Annette,

I can't believe your description of this problem we share. Your story could be mine completely. I am very sorry you have suffered so long. I have too. I am seeing Dr. Tarlov in Burlington, MA on July 20. Hope I can hold out that long. The burning in my feet is very uncomfortable, and the all the rest of the symptoms are mine, as well. Please respond. Gail

Hi
Did you receive any reply to the above. I am on a desperate search for relief from agonizing pain. Where did you read about scientists believing that tarlov cysts may be caused by the herpes simplex virus? I have been in excrutiating pain for months. I will not detail the medical journey here but it has been extensive and hopeless at this point. A tarlov cyst showed up on one of my MRI's and was on the S3 but "inconsequential". All of the symptoms noted for tarlov cysts are dead on for me. I have just had an extensive bout of shingles (6 weeks) As well I am very susceptible to very bad cold sores.
If anyone has further information on the herpes simplex connection could you please let me know.
Thanks