I just wanted to share this info. I know Selma said she had a cyst like this, as do I and I think it is something that is related to the tethered cord syndrome.
(Perineural Cyst; Sacral Nerve Root Cyst)
by Deanna M. Neff, MPH
Tarlov cysts are abnormal sacs of spinal fluid that usually form at the lower end of the spine (sacrum). What distinguishes Tarlov cysts is the presence of spinal nerve fibers within the cyst wall.
The cause of a Tarlov cyst is unknown but may be related to:
Trauma to the spine
Increase in cerebrospinal fluid pressure
Blockage of cerebrospinal fluid
Research has shown that the condition may be linked to connective tissue disorders (eg, lupus, Marfan syndrome). However, researchers are still studying this.
Once you have a Tarlov cyst, the following may cause it to become painful or cause other symptoms:
Traumatic injury such as a fall, automobile accident
Growth of the cyst
Although gender may not be a risk factor, Tarlov cysts have more often been found in women than men.
Most of the time Tarlov cysts do not cause symptoms. Cysts may cause pain and other signs of nerve irritation, such as weakness, numbness, burning, and tingling. In some cases, it can cause problems with bladder and bowel function.
An increase in pressure in or on the cyst may increase symptoms and cause nerve damage. Symptoms can vary from person to person.
If you have any of these symptoms, do not assume it is due to Tarlov cysts. These symptoms may be caused by other conditions. Tell your doctor if you have any of these:
Bladder or bowel dysfunction
Pain in the lower back, buttocks, legs and feet, vagina, rectum, or abdomen
Pain when coughing or sneezing
Weakness, cramping, or numbness in the buttocks, legs, and feet
Swelling, soreness, or tenderness around the lower end of the spine (sacral area)
Abnormal sensations in the legs and feet, or less commonly in the arms and hands
Sciatica symptoms, such as pain when sitting or standing
The feeling of “sitting on a rock”
Pulling and burning feeling in the tailbone
Loss of sensation on the skin
Loss of reflexes
Your doctor will ask about your symptoms and medical history. She will also do a physical exam. Depending on your symptoms, you may need to see a specialist, such as a neurosurgeon.
Tests may include the following imaging techniques:
MRI scan—a test that uses magnetic waves to make pictures of structures inside the body
CT scan—a type of x-ray that uses a computer to make pictures of structures inside the body
Myelogram—an imaging test that uses a special dye to view the spinal cord
Aspiration of the cyst—a needle is used to remove fluid from the cyst
If you are experiencing symptoms, talk with your doctor about the best treatment plan for you.
Treatment options might include:
Intramuscular corticosteroid injections or other medication injections—to relieve pain
Prescription medications—such as pain medications, antiseizure medications or antidepressants (both of these may be used to treat pain)
Lidoderm patches—applied to area of the spine where the cyst is located to provide temporary relief of pain and discomfort
Transcutaneous electrical nerve stimulation (TENS)—electrical impulses are delivered through the skin to help control pain
Nonsteroidal anti-inflammatory drugs (NSAIDs)—to relieve pain and inflammation
Aspiration of the cyst plus fibrin glue injection—a needle is used to drain the cyst and then a special glue is injected into the cyst to try to prevent it from filling again
Surgery—done if symptoms are severe; nerve damage is worsening; bowel and bladder dysfunction are worsening; or if there is wearing down of the sacrum or other spinal bones
There are no guidelines to reduce your risk of forming a Tarlov cyst. If you have a Tarlov cyst that does not cause pain or other symptoms, avoiding injury or heavy lifting may reduce your chance of developing pain or other symptoms.
National Institutes of Health
National Institute of Neurological Disorders and Stroke
Tarlov Cyst Disease Foundation
Women's Health Matters
American Academy of Neurology Foundation. Tarlov cysts. American Academy of Neurology Foundation website. Available at: http://www.thebrainmatters.org/disorders/index.cfm?event=view&disorder_id=1082. Accessed May 12, 2009.
American Association of Neurological Surgeons. Tarlov cyst. American Association of Neurological Surgeons website. Available at: http://www.neurosurgerytoday.org/what/patient_e/tarlov_cyst06.asp. Updated November 2006. Accessed June 15, 2010.
Mayo Clinic. Tarlov cysts: a cause of low back pain? Mayo Clinic website. Available at: http://www.mayoclinic.com/health/tarlov-cysts/AN01603. Updated May 22, 2009. Accessed May 12, 2009.
National Institute for Health and Clinical Excellence. Therapeutic percutaneous image-guided aspiration of spinal cysts. National Institute for Health and Clinical Excellence website. Available at: http://www.nice.org.uk/nicemedia/pdf/IPG223guidance.pdf. Updated August 2007. Accessed May 12, 2009.
National Institute of Neurological Disorders and Stroke. Tarlov cyst information page. National Institute of Neurological Disorders and Stroke website. Available at: http://www.ninds.nih.gov/disorders/tarlov_cysts/tarlov_cysts.htm. Updated March 12, 2009. Accessed May 12, 2009.
Tarlov Cyst Disease Foundation. Tarlov cyst information. Tarlov Cyst Disease Foundation website. Available at: http://www.tarlovcystfoundation.org/TarlovCystInformation.asp. Accessed June 10, 2010.
Last reviewed June 2010 by Cynthia Brown, MD
Last updated Updated: 9/15/2010
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
Sounds to me that these cysts are cycstercicosis and neurocystercicosis and it is systematic. My mother had been labeled with parkinsons, ALS, neurodegenerative disease..anything the Dr.s could pull out of their hats. The road led me to the cyst and scoliois following her death and hundreds of hours of research. I believe familial ALS is cystercisocis and neurocystercicosis. My grandmother had it, my mother and I have it. Cyst on the tailbone since birth and scoliosis. Unlike my mother and grandmother who died a horrible death, I have been keeping my symptoms at bay. Hot yoga, stretching my spine, is one of my lifesavers.
After reading ur post I wondered if u also have Chiari?
This is very helpful info....and again I wondered if u share the diagnosis of Chiari to see if there is something similar going on...and if those exercises and stretches are something one with Chiari could do,.
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