Syringomyelia


Syringomyelia


Click here to take part in the National Institute of Health Syringomyelia Study


What is Syringomyelia?

Syringomyelia (SM)(Sear-In-Go-My-Eel-Ya) SM, is a chronic disorder of the spinal cord, which consists of the formation of a syrinx (a pocket of cerebral-spinal fluid), sometimes referred to as a cyst or lesion inside the spinal cord cavity. This cavity enlarges over time and causes more damage and deterioration to the nerve centers of the spinal cord because of the pressure from the fluid. As it widens, it compresses and injures nerve fibers that carry information from the brain to the extremities. SM is sometimes progressively degenerative and typically has a slow onset, however, symptoms can rapidly progress due to strain or trauma to the spine, such as a car accident or heavy lifting. It can easily yield very painful neurological symptoms of varying intensities at varying times. This damage results in pain, weakness, muscle stiffness, and numbness in the back, shoulders, arms, or legs. People with syringomyelia experience different combinations of symptoms.

 

Symptoms may include

·Headaches

·loss of muscle mass

·loss of ability to use arms, legs and back

·numbness or decreased feeling in arms, legs and back

·pain in neck, shoulders, upper arms, and back

·muscle spasms in back, legs and arms

·RLS – Restless Leg Syndrome

·weakness or decreased muscle strength in legs and arms

·Uncoordinated movement

·inability to feel extremes of hot or cold

·Back stiffness

·Loss of bladder

 

Is there treatment?

To date, drugs have no curative value, except pain medication to help alleviate pain. Radiation is used rarely, as it also has no curative value, unless a tumor is present. Most surgeons recommend surgery if symptoms are interfering with a person’s quality of life. A syrinx cannot be removed from the spinal cord since it is embedded.

There are several types of surgery depending on what type of syrinx is present. The first type involves placing a shunt, a small tube, inside the syrinx in an attempt to drain it. The statistics show that some people may have temporary relief, some have no relief and some have worse pain. Another problem with this surgery is that it is short-lived, often repeated and not even suitable for some people. The decision to use a shunt requires extensive discussions between the surgeon and patient as it carries the risks of injury to the spinal cord, blockage, infections, and/or hemorrhage. Surgeons usually consider shunts a last resort. Many people actually have tumors on injury sites. If a tumor is causing syringomelia, then the recommended treatment is tumor removal. When the tumor is removed, this almost always eliminates the syrinx.

Some people have trauma-related syringomyelia, where surgery is performed at the initial injury site. This type of surgery is performed outside the spinal cord. Surgeons expand the area around the spinal cord and remove scar tissue. In some cases, surgeons may pierce the syrinx to drain it.


My holistic approach to treatment

Quantum Reflex Analysis (QRA) Testing

QRA is a testing program that shows the location of your body’s deficiencies based on medically accepted acupuncture meridian points. These points represent different organs. When these organs show a deficiency, we use strong and organic supplements the body needs for healing. Some theories with syringomyelia state the body is in a deep state of infection. We can test directly on the syrinx to find those infections. Your QRA practitioner will ask you to bring in a very small amount of your first-morning urine (before eating, drinking or exercise), so we can check your pH. We will also go over diet and give you a booklet filled with important health information to bring your body back to a healthy state.

 

Medi-Body Pack Detox System

A key factor overlooked in literally every disease is hidden, deep-seated toxicity in the ground substance of the body (i.e. the external meridians and connective tissue) which prevents normal nerve and chi (energy flow). These embedded toxins can mean years of delayed healing – or none at all. Detoxifying is one of the most important parts to healing. If you have had surgeries, piercing, injections, tattoos, burns, sprains, burns, falls, whiplash, radiation, surgically added metal objects, or dental work of all kinds, Premier Medi-Body Packs will safely detox those areas of trauma. Premier Medi-Body Packs promote cleansing and bio-energetic flow. They contain quantum-state "mud” comprised of unheated volcanic clay, peat magma, Indian shilajit, which initiates a deep intrinsic cleansing effect. When applied externally, these packs draw out deeply embedded toxins from operation sites, injury sites, the colon, interference sites, the organs, sinus areas and more. It quickly eliminates buildup of hidden toxins, helps increase circulation, boosts the immune system, eases muscle tension/pain, and rejuvenates cells.

 

My Healthy Alternatives to help reduce pain

1. Take Premier Research Labs Supplements

Buy them at heathersholistichealth@yahoo.com or http://www.prlabs.com/

·Max B

·Folic Acid

·Vitamin D

·OsteoVen

2. Eat and juice a large amount of organic fruits and vegetables on a daily basis. They contain natural immune boosters.

3. Use an Earthwrappe heating pad from Premier Research Labs or Heather’s Holistic Health. These infrared heating pads help release toxicity from the body and definitely helped me personally with a huge decrease in pain. Buy them at heathersholistichealth@yahoo.com or http://www.prlabs.com/ 

4. Get a Quantum Reflex Analysis (QRA) Test completed by a QRA practitioner. Contact Lisa at heathersholistichealth@yahoo.com for people who live in Delaware or http://www.prlabs.com/ to find a practitioner near you.


My Journey living with Syringomyelia

By: Lisa Torbert

Life-changing pain

My name Lisa and I have syringomyelia. Like many others, I have had it for quite some time, but I was recently diagnosed on February 8, 2013. I had an MRI the week before and expected to hear that I had a herniated disk. I was shocked to hear that I had syringomyelia, a lesion that only 41,000 other people in the United States have been diagnosed with.The size of my syrinx is 1.6 inches by ½ inch wide. I suffered for the last three years with severe back pain. Syringomyelia brings a new meaning to pain; only those afflicted understand. Most of the pain is constant; meaning you go to bed and wake up with it. Most days, my pain was a ten. Nothing seemed to help and many things irritated it. I used to lay on tennis balls three times a day just to try to get some relief.

Natural approach to recovery

I am the owner of a holistic health center and I have chosen a natural approach to Syringomyelia. My diet consists of mostly fresh fruits and vegetables, a quart of homemade green juice every day, raw nuts and raw bars. Twice a week, I add wild-caught salmon and wild-caught cod for a good source of protein. No alcohol, no cigarettes, no fast foods, and no processed foods. If you are serious about healing, then you HAVE to give up the toxins.

Using my QRA skills to heal

I have trained under a company called Premier Research Labs and became a Quantum Reflex Analysis (QRA) practitioner in 2009. Once I became ill, I took a deep look at my lifetime of trauma; car accidents, surgeries, and extreme stress-related experiences. I used a detox form and charted all of the accidents, scars from surgeries and vaccination sites from my entire lifetime. I have learned that my syringomyelia is a very deep infection. I decided I needed to pull out all the infection from all the toxic places in my body, including my teeth. If you have a mouth full of mercury or root canals, you will need to see a holistic dentist that can safely remove the toxicity. Our bodies are an incredible healing machine and with a little help boosting the immune system, they can heal from almost anything. Dental problems are more complicated. Unfortunately, once an infection lodges inside the gums it is there to stay until safely removed. Below you will find a toxic DNA report of one of my root canal removals. You will notice there were 15 infections present; five of my infections are a serious risk.

 




Get Involved:

Patients with Syringomyelia Needed for Study of Physiology

 

I have been accepted into a study group at the National Institute of Health that is listed below. They are currently searching for additional patients with syringomyelia for the study. This is the best way to become educated about this disease and help the study group learn more about syringomyelia.

 

To obtain information about the study:

http://www.ninds.nih.gov/funding/nindsnotes/032001/nindsnotes032001vol9.htm

For more information on Syringomyelia:

http://www.ninds.nih.gov/disorders/syringomyelia/syringomyelia.htm


Organizations that can help

Chiari & Syringomyelia Foundation

Nonprofit organization committed to disseminating accurate and current information about treatments for and best practices surrounding the management of Chiari malformation, syringomyelia & relatedcerebrospinal fluid disorders.
29 Crest Loop
Staten Island, NY 10312
info@CSFinfo.org
http://www.csfinfo.orgExternal link
Tel: 718-966-2593
Fax: 718-966-2593 (Call First)

 

America Syringomyelia& Chiari Alliance Project

Non-profit organization that works to improve the lives of people with syringomyelia, Chiari malformations, and related disorders. Publishes a newsletter and offers other written information, videotapes, an annual conference, and other services.
P.O. Box 1586
Longview, TX 75606-1586
info@asap.org
http://www.asap.orgExternal link
Tel: 903-236-7079 800-ASAP-282 (272-7282)
Fax: 903-757-7456

Christopher and Dana Reeve Foundation

The Reeve Foundation is dedicated to curing spinal cord injury by funding innovative research, and improving the quality of life for people living with paralysis through grants, information and advocacy.
636 Morris Turnpike
Suite 3A
Short Hills, NJ 07078
informations@christopherreeve.org
http://www.christopherreeve.orgExternal link
Tel: 973-379-2690 800-225-0292
Fax: 973-912-9433

National Organization for Rare Disorders (NORD)

Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
55 Kenosia Avenue
Danbury, CT 06810
orphan@rarediseases.org
http://www.rarediseases.orgExternal link
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291 

National Spinal Cord Injury Association

The National Spinal Cord Injury Association is dedicated to improving the quality of life for hundreds of thousands of Americans living with the results of spinal cord injury and disease (SCI/D) and their families. NSCIA, educates and empowers survivors of SCI/D to achieve and maintain the highest levels of independence, health and personal fulfillment.
75-20 Astoria Blvd
Suite 120
East Elmhurst, NY 11370-1177
info@spinalcord.org
http://www.spinalcord.orgExternal link
Tel: 800-962-9629
Fax: 866-387-2196

 

March of Dimes

Works to improve the health of babies by preventing birth defects and infant mortality through programs of research, community services, education, and advocacy.
1275 Mamaroneck Avenue
White Plains, NY 10605
askus@marchofdimes.com
http://www.marchofdimes.comExternal link
Tel: 914-997-4488 888-MODIMES (663-4637)
Fax: 914-428-8203

 

Spina Bifida Association

 

Non-profit association that provides information and referrals through a clearinghouse and toll-free number. Promotes research into the causes, treatment and prevention of Spina Bifida; conducts public awareness campaigns; and encourages socialization and training for people with Spina Bifida.

4590 MacArthur Blvd. NW, Suite 250
Washington, DC 20007-4266
sbaa@sbaa.org
http://www.spinabifidaassociation.orgExternal link
Tel: 202-944-3285 800-621-3141
Fax: 202-944-3295 

 

American Chronic Pain Association (ACPA)

Provides self-help coping skills and peer support to people with chronic pain. Sponsors local support groups throughout the U.S. and provides assistance in starting and maintaining support groups.

P.O. Box 850
Rocklin, CA 95677-0850
ACPA@theacpa.org
http://www.theacpa.orgExternal link
Tel: 916-632-0922 800-533-3231
Fax: 916-652-8190

 

Paralyzed Veterans of America (PVA)

Non-profit organization dedicated to serving the needs of its members—more than 19,000 veterans paralyzed by spinal cord injury or disease, as well as caregivers and others affected by these disabilities—through advocacy, education, and research programs.

801 18th Street, NW

Washington, DC 20006-3517
info@pva.org
http://www.pva.orgExternal link
Tel: 202-USA-1300 (872-1300) 800-555-9140
Fax: 202-785-4452

 

Spinal Cord Society

International advocacy organization that supports research, publishes a newsletter, and sponsors an international network of chapters.
19051 County Highway 1
Fergus Falls, MN 56537
scs-nc@nc.rr.com
http://scsus.org/External link