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Spinal Cord Diseases

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

Arach Friends
Arachnoiditis Support Group
Arachnoiditis
Information from Spine Universe
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

3.3   eMedicine - Brown-Sequard Syndrome

3.4   eMedicine - Brown-Sequard Syndrome : Article by Carol Vandenakker-Albanese, MD

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. MS publications changes

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.

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

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