Resource CenterSpinal Cord Diseases or DisordersPrinter Friendly Version

Spinal Cord Diseases or Disorders

Congenital or disease onset causes, symptoms, treatments and prognosis's effecting mobility or sensation

1. Arachnoiditis

1.1. Arachnoiditis information sheets and on-line support

Circle of Friends with Arachnoiditis
An online support group site for those who suffer from or know someone with arachnoiditis. COFWA trys to provide education, friendship, caring, sharing, and insights and assist with questions about arachnoiditis.


NINDS Arachnoiditis Information Page

1.2. Arachnoiditis Society for Awareness and Prevention

We are a nonprofit organization founded by victims of Arachnoiditis.  Our focus is to educate the general public as well as health care professionals and government officials about Arachnoiditis.  We strive to find ways to prevent future cases of arachnoiditis, and to provide support to those that have been the unfortunate victims of this cruel disease.

Our goals include:

* To work with legislators and leaders of the healthcare industry to ensure that, prior to any invasive spinal procedure, patients receive comprehensive informed consent information, including the fact that arachnoiditis is a possible outcome.  Only then can patients make truly informed decisions as to their treatment options;

* To shed light on, and to prevent, the all-too-common coercive pain management practices that require patients to receive invasive epidural steroid injections prior to receiving other forms of pain treatment;

* To liaise with members of the media and other thought-leaders to raise awareness of arachnoiditis;

* To raise capital for funding research into the condition and possible treatments. 

Our web site is: http://endarachnow.org/

2. Arterial-venous Malformation

2.1. Arteriovenous Malformation information sheet

Arteriovenious Malformation information page from NINDS

Arteriovenous information and treatment at Cleveland Clinic

3. Brown-Sequard Syndrome

3.1. Brown-Sequard information

3.1   NINDS (National Institute of Neurological Disease and Stroke) Brown-Sequard Syndrome Information Page

3.2   NORD (National Organization of Rare Diseases) Information Page

3.2. Brown-Sequard articles

3.2.1   Brown-Sequard with Horner's Syndrome

3.3. Other resource

3.5       The Official Patient's Sourcebook on Brown-Sequard Syndrome
This book has been created for patients who have decided to make education and research an integral part of the treatment process. Although it also gives information useful to doctors, caregivers and other health professionals, it tells patients where and how to look for information covering virtually all topics related to Brown-Sequard syndrome

4. Cauda Equina Syndrome

4.1. Cauda Equina Syndrome Fact Sheet

A Cauda Equina Syndrome Fact Sheet produced by the American Academy of Orthopedic Surgeons.

4.2. CES brief summary from Guideline.gov the National Guideline Clearinghouse

CES brief summary including recommendations and evidence

4.3. Cauda Equina Syndrome resources(video/Slides

Video/slide overview of Cauda Equina with informational blog responses

5. Central Cord Syndrome

5.1. Central Cord Syndrome information

Central Cord Syndrome information page from NINDS

 

5.2. Info from AANS

Information from the American Association of Neurological Surgeons

6. Guillian-Barre Syndrome

6.1. Guillian-Barre Syndrome

Guillian-Barre Snydrome information page from NINDS

7. Back and spine conditions/disorders (see Health & Wellness)

8. Multiple sclerosis

8.1. Alternative Medicine and MS

Alternative Medicine and MS  (See preview) is a single source for accurate and unbiased information on the many complementary and alternative medicines that can help manage some MS symptoms and promote general health. Readers will be able to: * find unconventional options for therapy; * learn of potentially dangerous interactions between alternative therapies and medical treatments; * identify therapies that are effective, low risk, and inexpensive; * recognize ineffective, dangerous, or costly alternative therapies. A section on Integrating Conventional and Unconventional Medicine links specific symptoms to potentially useful alternative therapies: If readers have, for example, spasticity or bladder problems,

8.2. Multiple sclerosis information sheets and organizations

Multiple sclerosis information page from NINDS

National MS Society
Help each person address the challenges of living with MS through our 50-state network of chapters. The Society helps people affected by MS by funding cutting-edge research, driving change through advocacy, facilitating professional education, and providing programs and services that help people with MS and their families move their lives forward.

Multiple Sclerosis Foundation
Resources assist people who have MS, their families and caregivers, regional support groups, and healthcare professionals. Access to our programs and services is available through our interactive web site or our national, toll-free helpline staffed by caring caseworkers and peer counselors. Our priority is to serve with empathy, resourcefulness and responsibility. All MSF services, as well as information, literature and subscriptions to our publications are provided free of charge. Provides peer counseling, assistive technology program, homecare and computer grants.

Multiple Sclerosis Association of America
MSAA offers a variety of programs and services in all 50 states: Helpline consultations, equipment distribution, MRI diagnostic funding, resource assistance, and public awareness campaigns. MSAA also provides valuable information on the disease and symptom management through its award-winning literature and educational videos.

8.3. MS and spasticity

Multiple Sclerosis-Related Specificity: Answers for You and Your Loved Ones (download attached document)
This brochure was developed specifically for people living with multiple sclerosis —and their loved ones—who want to learn more about spasticity. Questions and issues covered in this helpful and informative brochure include:

  • What is spasticity?
  • How do I know I have spasticity?
  • Will I develop spasticity?
  • Spasticity can cause different types of problems
  • Why is detection of spasticity important?
  • What should I do if I think I may have spasticity?
  • How can I prepare for a discussion about spasticity treatment with my specialist?

8.4. MSQR Publication Shift

MSQR 30.1 is the final issue of this publication. Subscriptions will no longer available.

Please note that NARCOMS will continue to send out a quarterly report to all of its Registry participants. If you are a member of NARCOMS and have a change of address, please contact them at 1-800-253-7884.

Although MSQR is no longer in production, United Spinal will soon be providing our readers and members even greater online access to the latest MS news and information later this year.

If you would like to be notified when the web site launches, simply join United Spinal or National Spinal Cord Injury Association and enter your e-mail address (current members with an e-mail address on file will automatically be notified).

8.5. MS and Vitamin D

Healthline has an interactive tool that shows the correlation between sun exposure, vitamin D, and MS rates.

8.6. MS Coalition Disease Modifying Therapy

Please see the attached MS Coalition Disease Modifying Therapy paper. And, visit MS Coalition for more details.

The National MS Society and the other member organizations of the MS Coalition have collaborated to produce a consensus document to summarize current evidence about disease modification and provide support for broad access to FDA-approved DMTs. This evidence-based document may be useful when addressing insurance questions (preauthorization, formulary, etc.); a companion piece for general audiences is currently under development.

After extensive review of the evidence, the MS Coalition makes the following recommendations:

Treatment

Initiation of treatment with an FDA-approved DMT is recommended:

  • As soon as possible following a diagnosis of relapsing MS
  • For individuals with a first clinical event and MRI features consistent with MS, where other possible causes have been excluded
  • For individuals with secondary-progressive multiple sclerosis who continue to demonstrate clinical relapses and/or demonstrate inflammatory changes

Treatment with any given DMT should be continued indefinitely unless any of the following occur:

  • Sub-optimal treatment response as determined by the individual and the clinician
  • Intolerable side effects or inadequate adherence
  • Availability of a more appropriate treatment

The factors affecting choice of treatment are complex and most appropriately addressed by the individual in collaboration with the treating clinician. Movement from one DMT to another should occur only for medically appropriate reasons.

Access

Due to significant variability in the MS population, people with MS and their clinicians require full access to a range of treatment options:

  • Different mechanisms of action allow for treatment change in the event of sub-optimal response.
  • Potential contraindications limit options for some individuals
  • Risk tolerance varies among people with MS and their clinicians
  • Route of delivery and side effects may affect adherence
  • Individual differences related to tolerability and adherence may necessitate access to different medications within the same class

Access to treatment should not be limited by the patient's frequency of relapses, level of disability, age, gender or ethnicity. Absence of relapses while on treatment should not be considered a justification for discontinuation of treatment. Treatment should not be discontinued to allow for determination of coverage by payers.

9. Polio/post Polio

9.1. Polio/Post Polio resources

Post Polio fact sheet from NINDS

Post Polio Health International

10. Spinal Cord Tumor

10.1. Spinal Cord Tumor-General Information & Support

NINDS diagnosis, treatment and research information for Spinal Cord Tumors

Mayo Clinic diagnosis, treatment and research

Spinal Cord Tumor Association (SCTA) is a caring community on the web, established by people just like you, who have been given the overwhelming diagnosis of a spinal cord tumor.  You, and those close to you undoubtedly have many questions. SCTA is a not-for-profit organization formed by spinal cord tumor survivors for the purpose of supporting survivors and their families.

11. Spina Bifida

11.1. Intro to Spina Bifida

Spina Bifida, the most common neural tube defect (NTD), is one of the most devastating of all birth defects. It results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin and a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area.

Types of Spina Bifida:

  1. Spina Bifida Occulta: This is a mild form of spina bifida which is very common. Estimates vary but between 5% and 10% of people may have spina bifida occulta. There is an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord.
  2. Meningocele: The meninges, or protective covering around the spinal cord, has pushed out through the opening in the vertebrae in a sac called the "meningocele". However, the spinal cord remains intact. This form can be repaired with little or no damage to the nerve pathways.
  3. Myelomeningocele: This is the most severe form of spina bifida in which a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed.

Preventing Spina Bifida:

Recent studies have shown that one factor that increases the risk of having and NTD baby is the low folic acid (a common water-soluble B vitamin, essential for the functioning of the human body) status before conception and during the first few weeks of pregnancy. If women consume 0.4 mg of folic acid prior to becoming pregnant and during the first trimester of pregnancy, the incidence of folic acid preventing spina bifida can be reduced by up to 75%.

Physical Limitations:

Children with spina bifida need to learn mobility skills, and often with the use of crutches, braces, or wheelchairs can achieve more independence. Also, with new techniques children can become independent in managing their bowel and bladder problems. Physical disabilities like spina bifida can have profound effects on the child's emotional and social development. It is important that healthcare professionals, teachers, and parents understand the child's physical capabilities and limitations. To promote personal growth, they should encourage children to be independent, to participate in activities with their non-disabled peers and to assume responsibility for their own care.

11.2. Spina Bifida resources

Spina Bifida information page from NINDS

Spina Bifida Association and the Spina Bifida Association National Spina Bifida Resource Center

11.3. Spina Bifida-A Personal Perspective


By Kelly Rouba


Jennifer Biggers (left) and Amy Saffell both have the same type of spina bifida, but every person's condition is unique.

I first met Karen Palazzini in freshman year of high school. Although one might guess that our similar situations bonded us together, having a disability was something we rarely discussed. Instead, it was the countless chocolate desserts and sappy chick flicks-not her struggle with spina bifida or my battle with arthritis- that paved the way to friendship.

So, it wasn't until I took on this assignment that I finally asked Karen to share with me exactly what it means to have spina bifida. Now, 13 years later, I finally have the answer.

Spina Bifida-the Basics

To put it simply, "Spina bifida is a birth defect," Karen told me during a recent girls' night out. From there, things get a bit more complicated.

Spina bifida takes three forms-occulta, meningocele, and myelomeningocele. In each case, "the spinal cord in the fetus develops within the first 28 days of pregnancy," says Amanda Darnley, director of Communications and Marketing for the Spina Bifida Association, "Spina bifida occurs when the spine fails to close."

Occulta, the least severe of the forms, is the result of a small defect or gap in several vertebrae. Occulta is often referred to as the "hidden spina bifida" because motor or sensory impairments are not evident at birth. In most cases, there are no symptoms, however neurologic deterioration can develop later in life.

The second type, meningocele, means that the meninges (or membranes that cover the central nervous system) are protruding from a hole in the spinal cord. Although the nerves usually aren't damaged, individuals may suffer minor health problems.

Myelomeningocele is the most severe of the three and means that individuals have a hole (or lesion) in their spinal cord where the nerves don't connect. If the lesion is lower on the spinal cord, it usually means the person will have a less severe case of spina bifida.

"[Myelomeningocele] usually results in some sort of paralysis in the legs and it is common to see some sort of bowel and bladder control difficulties," Darnley said, adding, "With the bladder issues, people often end up having to catheterize, which can result in urinary tract infections."

Additionally, up to 90% of children who have myelomeningocele will experience hydrocephalus, which occurs when cerebrospinal fl uid builds up inside the head. "So [doctors] insert a shunt and it drains the fluid off the brain. The shunt is something [patients] will monitor their entire lives," Darnley said.

Amy Saffell, another friend of mine who was also born with spina bifida and relies on a wheelchair for mobility, pointed out that having spina bifida is not like having a typical spinal cord injury.

"Although the paralysis may be the same," Amy told me, "one big difference is that our body grows up knowing how to compensate. Many people with spinal cord injuries have bad muscle spasms and take lots of medicine to regulate their body since it has to operate totally differently from when they were able bodied. With spina bifida, we don't really have to do that because our body is totally used to being paralyzed; it's always been that way."

<strong>The Personal Side of Spina Bifida </strong>

"Spina bifida occurs in seven out of every 10,000 live births in the United States. And no two cases of spina bifida are ever the same. Every case is unique," Darnley says.

Karen has myelomeningocele, but her situation is not quite as severe as Amy's or another friend Jennifer Biggers. Now 23 years old, Jennifer has relied on a wheelchair for much of her life.

"I got my first wheelchair when I was four; it was right before preschool," Jennifer said. "Until then, I was carried everywhere. I also used braces when I was younger, mainly for exercise, but it was tiring because I don't have any muscle strength to hold me up."
 
Studies suggest a correlation between folic acid intake in a mother's diet and the incidence of spina bifida in her offspring. Doctors advise women of child-bearing age to eat diets rich in folic acid.

"Most children with spina bifida will have multiple surgeries throughout their childhood," Darnley says. "There are lots of different surgeries that are done."

Over the years, Karen has had about 10 operations. "My first surgery was when I was two months old and doctors basically operated to stabilize my spinal cord," she said. "Another time, I had a pin put in my hip to try to stabilize that joint. Because of the spina bifida, there was nerve damage in my right leg and the joints and bones didn't form right."

Jennifer's first surgery took place soon after she was born. "I had a hole in my back so I had to get that sewn up," she said. Later on, doctors "put a shunt in [my head], but it never worked and I never needed it. I guess it was a precautionary thing. It ended up swelling, so they took it out. I also have rods in my back now because I had scoliosis when I was younger."

Is There a Cure?

To date, the exact cause of spina bifida is still unknown. "Many things can affect a baby, from family genes to things a woman may have come in contact with during pregnancy," Darnley said.

There is also no cure for spina bifida. However, doctors are now experimenting with an in-utero surgery that might help babies who have the defect, Karen said. In the study, doctors are looking at the benefits of closing the lesion before the baby is born. Typically, doctors will operate after the baby is born.

It has also been found that the B-vitamin folic acid can be used as a preventative measure against spina bifida. According to Darnley, there was a signifi cant decrease in the number of cases of spina bifida when manufacturers started fortifying cereals and fl our by putting folic acid in them. "But, we still see a high level of occurrence (of spina bifida) in the Hispanic population," she noted.

"A lot of doctors say spina bifida results because of the lack of folic acid in the mother, but honestly it could just happen. My mother was healthy and taking everything she was supposed to," Jennifer added.

But, Darnley still advises, "Anyone who is of a child-bearing age should be taking a daily multivitamin. A normal woman should take 400 micrograms of folic acid each day, and those who have had a previously affected pregnancy, a doctor will put them on a prescription of a higher dose."

12. Spinal Stenosis

12.1. Spinal Stenosis causes, diagnosis and treatment

NIAMS fact sheets on Spinal Stenosis

Spinalstenosis.org treatment, tests etc

13. Stroke/spinal

13.1. Spinal stroke

NINDS spinal cord stroke/infarction information page

14. Syringomyelia

14.1. Syringomyelia information page and on-line support

American Syringomyelia Alliance Project

Post-Traumatic Syringomyelia
Syringomyelia is an uncommon but disabling complication of SCI. Although more than half of all people with SCI develop a cyst in the spinal cord at the injury site, only about 4% develop syringomyelia, in which the cyst fills with fluid and expands.

Syringomyelia Factsheet/NINDS , The National Institute of Neurological Disorders and Stroke, National Institutes of Health, provides factual, accurate information on this disorder.

UCLA NEUROSURGERY | Spinal Disorders & Diseases
Click on the condition in the list to access this information

Siringomielia (en espanol)

14.2. Chiari Malformation-basic information from NINDS

Chiari Malformation-basic information from NINDS

What is Chiari Malformation?
Is there any treatment?
What is the prognosis?
What research is being done?
Clinical Trials
Organizations
Additional resources from MEDLINEplus



15. Transverse Myelitis

15.1. Transverse Myelitis resources

Transverse Myelitis fact sheet from NINDS

Transverse Myelitis Association with support groups and clinical trial information