Any new update since 2007 with your Tarlov Cyst? It's been almost a year. Did you seek medical attention with Dr. Long? Surgery to remove? Aspirate it? Right now I do have a tarlov cyst located on my S3 region. The neurosurgeon thinks that the burning is not coming from that. I had a lower MRI & now am having an upper MRI. For now, I'm going to my family physician to seek meds & do a Vitamin B12 Deficiency test. If all is negative, it has to go back to the cyst. Any feedback on this is appreciated.

Hi Annette,

I'm new to this site, and have a giant TC in S2-S3. Where is your burning? My symptoms are burning, cramps, spasms and strange sensations along the backs of my calves, ankles, feet and toes, (tibial nerve at S3) as well as hips, glutes and some upper thigh, bladder and bowel urgency( Nerves from S2)...I've seen a NS here in Santa Monica, Ca. and will have surgery on March 13th (his 12th surgery on TCs). There is a Dr. Feigenbaum from Kansas, Mo who has performed more than 90 surgeries on TCs, if you want he'll look at your films and give you a phone consult. Many MDs will tell you the cysts have nothing to do with your pain (my first NS 3 years ago gave me that erroneous information and now my cyst and symptoms are much worse). Best of luck....Tobi

Hi Tobi,

I don't know how big mine is. It's located on the middle of my tailbone (S3 region). I had an MRI done 3 years ago & it showed I had it then. However, they were not concerned @ that time. I only had chronic back pain during that time. 3 years later, I did another MRI which shoed the cyst & mild bulging disks @ L3/4 & L4/5. I now have constant burning throughout bottom, legs, ankles, feet. I've even had some burning in my hands & arms. I do have bowel incontinence but bladder seems to be fine. The NS said that the burning wouldn't be caused from the cyst??? I am having an upper MRI done tomorrow. I did the nerve testing with the Neurologist last week. All nerves & muscles looked good. Still no cause for the burning yet. I've been checked for thyroid issues, diabetes & Vitamin B12 Deficiency. All were negative. If it is not upper back, my opinion it's either the cyst or start of periphial neuropathy. I do have some symptoms of the neurophathy. ??? This can be caused from an accident/injury or even use of medications. The burning started back in 11/07. My family physician has put me on Neurotin (100mg) for now & only taken @ night. It does make you drowsy, which I was fine with that because I am not sleeping @ night. I also take Xanax for anxiety. I can only take (3) a day .5mg/ea. So I've been spreading that out through the day. The meds have calmed my burning down. It's not completely gone away, but it's gone from a 9/10 to a 3/4. It's been very frustrating mentally & physically. I do have a desk job & it makes it tough sitting all day. I had to buy an expensive chair pad & back rest. This helped with my lower back pain only not the burning. Sometimes I wonder if stress plays a role in it. The last 6 mo. for me have been amazingly stressful. It's nice to talk to others who are experiencing similar physical ailments & try to reach a diagnosis. I do know after reviewing some info. off the internet, not a lot of NS want to mess with the cyst(s). Too many risks involved. I have heard of Dr. Frank Feigenbaum from Kansas, MO. I live in Illinois. I'm not sure how close that is from here.

Are you having the cyst removed or just aspirated?

Please keep me posted on the results of your surgery. I do appreciate it.

Annette

I have been diagnosed with Tarlov Cysts and I have been researching the subject for 8 months. It appears surgery is the most effective treatment (NINDS Tarlov Cysts info page).

Does anyone know how a layperson can find out the inside scoop on the few doctors who are doing this surgery?

What the doctor's reputation is among other doctors and in the hospitals?
What the nurses that work in and around the doctors have to say about them? For example, if another doctor's wife had a Tarlov Cyst, who would he send her to?!

I would also like to know if there is anyone out there who has had surgery and is now pain free, i.e., is the surgery a success or do they still have pain but just a different kind of pain.

Thanks so much for any help or insight you have...I just don't know where to turn at this point.

barb

Hi Barbara,

How are you? Wonder if you still check these threads? I'm six months out from my surgery on my TC, and virtually pain free! It's been a miracle of a journey...Best, Tobi

[QUOTE=tobim1;374215]Hi Barbara,

How are you? I have just been diagnosed with a very large TC. Could you please tell me who did your surgrery? Are you still pain free?

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

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.