Helpful Links & Information

Doctor Links

• Biography of Dr. Ulrich Batzdorf  - This site provides information on Dr. Batzdorf. According to this site, he is a “professor and Director of Spinal Neurosurgery and Executive Director of the Spine Center. Specializing in Spinal Neurosurgery, Dr. Batzdorf's primary focus is in the treatment of Chiari malformation, syringomyelia, and spinal cord tumors.” 

• UCLA - Clinical Programs / Chiari and Syringomyelia Program  

Publications

• Syringomyelia associated with foramen magnum arachnoiditis 
• Slit like syrinx cavities: a persistent central canal 
• Syringomyelia persistence after Chiari decompression as a result of pseudomeningocele formation: implications for syrinx pathogenesis: report of three cases  

• Biography of Dr. Edward Benzel – Dr. Benzel is from the Cleveland Clinic and specializes in Chiari malformation, fibromyalgia and syringomyelia.  This site also provides links to the Cleveland Clinic website and spineuniverse.com.  

• Cleveland Clinic Neuroscience Center  - According to their site,” The Cleveland Clinic Neuroscience Center is a state-of-the-art facility with world-class neurologists, neurosurgeons and scientists. The Neuroscience Center diagnoses and treats various conditions, including brain tumors, brain aneurysms, movement disorders, Parkinson’s Disease, epilepsy, multiple sclerosis, and back and neck disorders. U.S.News & World Report ranks the Cleveland Clinic as one of America's top ten neuroscience programs and best in Ohio.”

Publications

• Stretch-associated injury in cervical spondylotic myelopathy: new concept and review
• Techniques for the ventral correction of postsurgical cervical kyphotic deformity
• Biomechanics of spinal deformity  

• Biography of Dr. Peter Carmel -.  Dr. Carmel is the Chairman of the Department of Neurological Surgery, Co-Director of the Neurological Institute of New Jersey and leads the Division of Pediatric Neurosurgery at the University of Medicine & Dentistry of New Jersey.  The website provides links for further information on Dr. Carmel and a list of his publications.
• 
  UMDNJ Department of Neurology - This link leads to the University of Medicine & Dentistry of New Jersey Department of Neurology homepage.
• UMDNJ Neurological Centers for Excellence - This link will lead to the University of Medicine & Dentistry of New Jersey Neurological Centers for Excellence site.  This site has links for each Center of Excellence.

• Publications
• Congenital intradural pathology
• Management of the Chiari malformations in childhood
• Use of a compact intraoperative low-field magnetic imager in pediatric neurosurgery

• Chiari Institute Biographies  - This link leads to a site that has biographies of Dr. Thomas H. Milhorat, Dr. Paolo A. Bolognese, Dr. Roger W. Kula and Dr. Sol Mora

• Publications by Dr. Milhorat:
  • Acute syringomyelia: case report
  • Tailored operative technique for Chiari type I malformation using intraoperative color Doppler ultrasonography.
  • Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients.

Publications by Dr. Bolognese:

• Acute syringomyelia: case report
• Tailored operative technique for Chiari type I malformation using intraoperative color Doppler ultrasonography.

Publications by Dr. Kula:

• Surgical management of hydrocephalic dementia in Paget's disease of bone: the 6-year outcome of ventriculo-peritoneal shunting

 

• Chronic fatigue syndrome: what role does the autonomic nervous system play in the pathophysiology of this complex illness?  

 

• Chiari I malformation redefined: clinical and radiographic findings for 364 symptomatic patients

 

• The Chiari Institute  - According to their site “The Chiari Institute is the world's first comprehensive, multidisciplinary center for the management of patients suffering from Chiari malformation…; syringomyelia…; and related disorders.”  This site contains information on Chiari malformation and syringomyelia, as well as further information on the institute.  Dr. Thomas H. Milhorat, Dr. Paolo A. Bolognese, Dr. Roger W. Kula and Dr. Sol N. Mora are all doctors at the Chiari Institute.

 

 

• Biography of Dr. Richard Ellenbogen - This site provides information on Dr. Ellenbogen, a specialist in pediatric neurosurgery.  This biography lists his research focus, education, honors, awarded research grants, publications and contact information.

 

• University of Washington's Department of Neurosurgery  - This is a site for the University of Washington’s Department of Neurosurgery.

 

• Chiari Malformation Clinic at the University of Washington - This site gives information on Chiari malformation, syringomyelia and cerebral spinal fluid dynamics. This clinic is headed by Dr. Richard Ellenbogen, who specializes in pediatric neurosurgery.

 

• Publications

 

• Atypical hemifacial microsomia associated with Chiari I malformation and syrinx: further evidence indicating that chiari I malformation is a disorder of the paraaxial mesoderm. Case report and review of the literature

 

• Occult intraspinal anomalies in congenital scoliosis

 

• Spontaneous resolution of a cervicothoracic syrinx in a child. Case report and review of the literature.

 

• Information on Dr. Scott Falci  - According to this site, “Rehabilitative neurosurgery is a subspecialty that involves specialized surgeries on patients with traumatic spinal cord injury. These surgeries offer treatment for syringomyelia, post-traumatic tethered spinal cord, pain and spasticity.”  Dr. Scott Falci is the Chief Neurosurgical Consultant for Craig Hospital. His biography is included on this site.

 

• Craig Center for Spinal Cord Injury Research – According to the site,“The Craig Center for Spinal Cord Injury Research was founded in 1996 in support of Craig Hospital’s commitment to basic science research in restorative and regeneration treatments for patients with spinal cord injury.”

 

• Publications

 

• Surgical treatment of posttraumatic cystic and tethered spinal cords

 

• Obliteration of a posttraumatic spinal cord cyst with solid human embryonic spinal cord grafts: first clinical attempt

 

 

• Biography of Dr. Barth Green from the University of Miami - Dr. Green is the Chairman of the Department of Neurological Surgery at the University of Miami.  In addition to being a neurosurgeon, Dr. Green is also an orthopedic surgeon.

 

• Department of Neurological Surgery at the University of Miami - This is a link to an overview of the Department of Neurological Surgery at the University of Miami.

 

• Miami Project to Cure Paralysis  - Dr. Green is the President of the Miami Project which is dedicated to researching and eventually curing paralysis. This site also contains a list of Dr. Green’s publications.

 

• Publications

 

• Surgical treatment of post-traumatic myelopathy associated with syringomyelia

 

• Outcome after surgical treatment of progressive posttraumatic cystic myelopathy

 

• Acute traumatic central cord syndrome--experience using surgical decompression with open-door expansile cervical laminoplasty   

 

 

• Biography of Dr. Bermans J Iskandar - UW Children's Hospital – The site lists where Dr. Iskandar is located, his primary specialty and subspecialties, professional certifications, as well as hospital affiliations.

 

• University of Wisconsin Children's Hospital - Neurosurgery – According to the site, “UW Health pediatric neurosurgeons provide comprehensive services in general and specialty neurological surgery, including surgical therapy for injuries and diseases of the brain, spine and peripheral nerves”

 

 

• Publications

 

• Placement of baclofen pumps through the foramen magnum and upper cervical spine

 

• A critical analysis of the Chiari 1.5 malformation

 

• Foramen magnum cerebrospinal fluid flow characteristics in children with Chiari I malformation before and after craniocervical decompression

 

 

• Biography of Dr. Arnold Menezes - This is a site that lists the education and accomplishments of Dr. Menezes.  Dr. Menezes is from the University of Iowa. The site also provides a link which lists Dr. Menezes’ publications.

 

• University of Iowa Department of Neurosurgery  - This is a link for the University of Iowa’s Department of Neurosurgery.

 

• Publications

 

• Pediatric spinal deformities

 

• Chiari I malformation in the very young child: the spectrum of presentations and experience in 31 children under age 6 years

 

• Cervical and thoracic dermal sinus tracts. A case series and review of the literature.   

 

 

• Biography of Dr. John Oro  - This link lists Dr. Oro’s education, faculty appointments, teaching positions, honors, awards and more.

 

• NeuroSource
• Dr. Oro is the founder and editor of the website

 

• Publications
• Evolution of the brain: from behavior to consciousness in 3.4 billion years

 

• Spinal cord injury without radiographic abnormality and Chiari malformation

 

• Balloon device for experimental graded spinal cord compression in the rat   

 

  

 

 

 

 Links to Definitions and Descriptions for General Anatomy, Pain, Spinal Cord Injury, Syringomyelia, and Chiari Malformation

 

General Anatomy

• NINDS -  National Institute of Neurological Disorders and Stroke

• Headache - An Aetna InteliHealth site that gives information on headaches.

• Icon Health Publications - This site sells publications on many physical and mental disorders.

Pain

• American Pain Foundation - Manage Your Pain – Tips and suggestions on how to manage your pain.

• American Society of Spine Radiology – This page of the American Society of Spine Radiology provides a list of links on pain management.

• Clinical Nuggets and Pearls: Chronic Neuropathic Pain and Opioid Tolerance - This is an International Journal of Pharmaceutical Compounding article for purchase.  According to this website, “The author focuses on chronic neuropathic pain and opioid tolerance.

• Back Issue of the International Journal of Pharmaceutical Compounding - This will enable you to purchase past issues or single articles from the International Journal of Pharmaceutical Compounding.

• Pain - This site provides information and news about pain. 

• Pediatric Pain - This site is for The Pediatric Pain Research Lab located in the IWK Health Centre and the Psychology Department of Dalhousie University in Halifax, Nova Scotia, Canada. It provides information for professional healthcare workers, a pediatric pain sourcebook and a self help section for kids and parents.

• Post Graduate Medicine - Neuropathic Pain – This webpage describes the causes of pain and why neuropathic pain is different from other types of pain.

• The Richeimer Pain Update - Understanding Neuropathic Pain – Provides information on neuropathic pain. 

• Spine Universe - Neuropathic Pain – This webpage describes neuropathic pain at length. It discusses pain terminology, pathophysiology of neuropathic pain, peripheral and central mechanisms and management of neuropathic pain.

Spinal Cord Injury

• NINDS - Spinal Cord Injury: Hope Through Research – A This is a National Institute of Neurological Disorders and Stroke page.  It gives a great deal of information on spinal cord injury.

• NINDS - Spinal Cord Injury Information Page – A condensed version of “Spinal Cord Injury: Hope Through Research” from the National Institute of Neurological Disorders and Stroke page.   

• SCI-Info-Pages – Provides information and statistics on spinal cord injury.

• Spinal Cord Injury and Disease Resources – This site that offers many resources and links relating to spinal cord injury.

• Spinal Cord Injury Resource Center – According to this site, this organization offers “a vast amount of information helping to explain basic anatomy, physiology, and the complications resulting from a spinal cord injury.”

• Miami Project - What is Spinal Cord Injury? – This page describes spinal cord injury.  

Syringomyelia

• The Chiari Clinic - Information on Syringomyelia - This is a link to the Chiari Clinic at the University of Missouri-Columbia School of Medicine. This site will provide a quick anatomy of the spinal cord and information syringomyelia.

• The Chiari Institute - Description of Syringomyelia - Provides a description of syringomyelia and Chiari malformation.

• UCLA Spine Center - Description of syringomyelia  - This page describes syringomyelia.

• NINDS - Syringomyelia Fact Sheet – A fact sheet on syringomyelia from the National Institutes of Neurological Disorders and Stroke.

• NINDS - Syringomyelia Information Page - A condensed version of the NINDS syringomyelia fact sheet. The site also provides related NINDS publications on syringomyelia.

• NORD – Information on Syringomyelia - Provides information on syringomyelia from.  This page also gives you the option of purchasing a full report.

Chiari Malformation

 

• Chiari Clinic at the University of Missouri-Columbia  - This is a link to the Chiari Clinic at the University of Missouri-Columbia School of Medicine. This site will provide a quick anatomy of the brain and information on Chiari malformation

• The Chiari Institute - Description of Chiari Malformation  - Provides a description of syringomyelia and Chiari malformation.

• UCLA Spine Center - Description of Chiari Malformation – Provides a description of Chiari malformation.

• Cleveland Clinic - Information About Chiari Malformation  - Provides information about Chiari malformation.

• NeurosurgeryToday.org - Information on Chiari Malformation – Provides information and possible causes of Chiari Malformation. 

• NINDS - Chiari Malformation Information Page – An Information page on Chiari malformation from the National Institute of Neurological Disorders and Stroke website.

• NORD -  Description of Arnold Chiari Malformations -  Information on Arnold Chiari malformations from National Organization for Rare Disorders. This page also gives you the option of purchasing a full report.  

Links to Definitions and Descriptions for Related Disorders

 

Arachnoid Cysts

• Health Link - Arachnoid Cysts - Short article on what arachnoid cysts are. 

• NINDS - Arachnoid Cyst Information Page – An information page on arachnoid cysts from the National Institute of Neurological Disorders and Stroke.

• UCLA Neurosurgery - Arachnoid Cyst - Provides a brief description of what arachnoid cysts are, the symptoms, diagnosis, treatment and more. 

• Wrong Dagnosis.com - Provides links for information about arachnoid cysts. Links indclude a list of symptoms, treatments, prognosis, a glossary, articles about arachnoid cysts and more.

Fibromyalgia

• Fibromyalgia Network - Information on Fibromyalgia - Information and resources for fibromyalgia.

• Mayo Clinic - Fibromyalgia - Information on fibromyalgia.

• National Fibromyalgia Association - About Fibromyalgia - Information about fibromyalgia. 

Hydrocephalus

• Hydrocephalus Association - Information on Hydrocephalus - This information about Hydrocephalus. 

 

• Hydrocephalus Foundation - Facts on Hydrocephalus – This is a page describes hydrocephalus.

 

• NINDS - Hydrocephalus Fact Sheet  - A fact sheet on hydrocephalus from the National Institute of Neurological Disorders and Stroke.

 

• NINDS - Hydrocephalus Information Page - A condensed version of the Fact Sheet on Hydrocephalus National Institute of Neurological Disorders and Stroke.

 

Spina Bifida

• March of Dimes - Spina Bifida Information – Information on spina bifida.

 

• NINDS - Spina Bifida Fact Sheet – A fact sheet on spina bifida from the National Institute of Neurological Disorders and Stroke.

 

• NINDS - Spina Bifida Information Page  - A condensed version of the fact sheet on spina bifida from the National Institute of Neurological Disorders and Stroke.

 

• SBA - Description of Spina Bifida - This is information on spina bifida.

 

Resources

Veterans

• American Pain Foundation - Veterans and Pain -  The American Pain foundation, in association with the Disabled American Veterans work to help veterans who are in pain by providing information and support.

 

• Department of Veteran Affairs - The official site of the Department of Veteran Affairs. Veteran Affairs is committed to providing prompt service to veterans.

 

• Disabled American Veterans (DAV) Home Page - The DAV works to help Veterans who are disabled. 

 

• Paralyzed Veterans of America – This is the Paralyzed Veterans of America (PVA) homepage.  According to this site, “The Paralyzed Veterans of America is a congressionally chartered veteran’s service organization, founded in 1946.”  The PVA will use its expertise to advocate for its members.

 

• VA Technology Assessment Program VATAP  - The Veteran Affairs Technology Assessment Program (VATAP) is a department of Veteran Affairs.  This page describes spinal cord injury, why people with spinal cord injury need special care and why the VA is interested in spinal cord injury.

 

 

Support and Education Organizations

• American Pain Foundation – The American pain foundation provides information, advocacy and support for those in pain.

 

• ASAP – The American Syringomyelia Alliance Project (ASAP) is a support group and according to its website, has a goal “To improve the lives of persons affected by syringomyelia, Chiari malformation and related disorders while we find the cure.”

 

• Association for Spina Bifida and Hydrocephalus -  This page has information on both disorders, several publications for sale, information about fundraising, information about the types of research grants they offer, a downloadable quarterly newsletter and links to recent articles on spina bifida and hydrocephalus

 

• Arachnoid Cyst Foundation - This is a support and educational organization for people with arachnoid cysts.

 

• Canadian Syringomyelia Network – According to the website, the Canadian Syringomyelia Network offers “Worldwide support to those with SM.”

 

• Children and Adults with Spina Bifida and Hydrocephalous - A resource site for parents of children with Spina Bifida and adults with Spina Bifida.

 

• Conquering Chiari - Conquering Chiari intends to live up to their name through education, awareness and research.

 

• Cure Paralysis Now – According to this website,” This site is dedicated to all who are involved with or affected by spinal cord injury, especially researchers and clinicians in multi-disciplinary fields of study that may relate to the advancement of the healing, or cure of spinal cord paralysis.”

 

• Hydrocephalus Association – This organization provides support, information and advocacy for those affected by Hydrocephalus. 

 

• Hydrocephalus Foundation, Inc – This foundation is dedicated to providing support, information and networking opportunities for those affected by Hydrocephalus.

 

• National Fibromyalgia Association - The Fibromyalgia Association has a mission improve the quality of life for those with fibromyalgia.

 

• NORD - This is a link to the National Organization for Rare Disorders homepage. 

 

• National Spinal Cord Injury Association - This organization is dedicated to improving the quality of life of those affected by spinal cord injury.

 

• Spina Bifida Association (SBA) - This is a link to the Spina Bifida Association which according to the site, “…serves adults and children who live with the challenges of spina bifida.”

 

• Tethered Spinal Cord  - Tethered Spinal Cord is an e-mail group for those affected by a tethered spinal cord.

 

• United Spinal Association - This link will lead to the United Spinal Association homepage. The United Spinal Association works to improve the lives of those affected by spinal cord injury or disease.   

 

• WACMA - This link is for the World Arnold Chiari Malformation Association.  WACMA is committed to ensuring those affected by Arnold Chiari Malformations have current information, understanding and support.

 

• Wishes & Rainbows - This link will lead to the Wishes & Rainbows homepage.  Wishes & Rainbows is an organization that is dedicated to supporting those with Arnold Chiari malformations, syringomyelia and other chronic conditions.  

 

 

 

Research Information, Articles and Organizations

 

• American Journal of Neuroradiology - This is an online version of the American Journal of Neuroradiology.  It offers peer reviewed papers, case reports and technical notes covering spectrum of diagnostic imaging of the brain.

 

• International Journal of Pharmaceutical Compounding  - This is the International Journal of Pharmaceutical Compounding website.  According to this website this is “a bi-monthly, scientific and professional journal emphasizing quality pharmaceutical compounding.”  This site will let you subscribe to a journal as well as search for articles.

 

• MD Choice – According to this website, “MDchoice.com is the Web's true Medicine and Health Portal. Enter to get free access to the best online, physician-reviewed information available.”

 

• MedlinePlus - This site provides information, articles and resources for many medical conditions.

 

• The Miami Project to Cure Paralysis – This is The Miami Project’s homepage.  The Miami Project is a large spinal cord injury research center.

 

• National Academies – This is a site that will enable you to search for information for various medical problems.

 

• National Library of Medicine  - This link leads to the United States National Library of Medicine. This is “the world’s largest biomedical library.”

 

• Neurosurgery Online – This is an online version of the Official Journal of the Congress of Neurological Surgeons.  This has a searchable archive, subscription information, links and photo gallery.

 

• Physician Reports – Provides Physician reports for customers

 

• PubMed – This site is a database that allows you to search for biomedical articles.  P PubMed has articles that date back to the 1950’s.

 

• Stem Cell Information – This is the Official National Institutes of Health resource for stem cell research.

 

 

 

Travel

 

• Air Carrier Access Act – “This guide is designed to offer travelers with disabilities an authoritative source of information about the Air Carrier Access rules: the accommodations, facilities and services that are not required.”

 

• Angel Flight Inc. – According to this site, "Angel Flight, Inc. arranges free air transportation for needy patients and health care organizations by volunteers” Each Angel Flight site listed below fly in the specified area.

 

• Mercy Flight – According to this site, “MERCY FLIGHT provides FREE AIR TRANSPORTATION for people with limited financial means who need treatment at distant medical facilities or for other compassionate needs”

 

• Mercy Medical Airlift – According to the Mercy Medical Airlift site, “MERCY MEDICAL AIRLIFT (MMA) is a non-profit organization dedicated to serving people in situations of compelling human need through the provision of charitable air transportation. MMA is totally supported through charitable giving and the services of volunteer pilots and office assistants”

 

 

Miscellaneous

 

• Brave Kids - This site provides resources for special need children.

 

• MedicAlert – According to this site, “The MedicAlert Foundation is a non-profit healthcare informatics organization dedicated to providing services to our members that protect and save lives.”  MedicAlert offer a wide variety of products and services. They are most well known for their MedicAlert bracelets and necklaces.

 

• National Institute on Disability and Rehabilitation Research  - According to this site, “The National Institute on Disability and Rehabilitation Research (NIDRR) provides leadership and support for a comprehensive program of research related to the rehabilitation of individuals with disabilities.”

 

• National Rehabilitation Information Center (NARIC) – According to this webpage, “The NARIC Web site, [is a] gateway to an abundance of disability- and rehabilitation-oriented information organized in a variety of formats designed to make it easy for users to find and use.”

 

• Office of Disability and Income Security Policy  - This is a site that lists the Social Security Agencies’ program policy documents.

 

• Office of Rare Diseases - According to the Official Rare Disease site, it “… provides information about ORD-sponsored biomedical research, scientific conferences, rare and genetic diseases in English and Spanish… and a portal to information on major topics of interest in the rare diseases community.”

 

• Office of Special Education and Rehabilitative Services – According to their site,” The Office of Special Education and Rehabilitative Services (OSERS) is committed to improving results and outcomes for people with disabilities of all ages.”

 

• Rx List - This site allows you to search for information on many prescription medications.

 

 

 

 

 

How to Find a Doctor

Article Written by Barbara Kane

 

Choosing a neurologist or a neurosurgeon is one of the most important aspects of managing the care of CM/SM. People often report they have a difficult time evaluating what a physician is telling them. Doctors often describe their expertise dealing with CM/SM with phrases such as “familiar,” “experienced,” “a lot of cases,” which are difficult to quantify. 

Given that Column of Hope’s support volunteers are not licensed to practice medicine, we have to resist the temptation to say, “Just go see Dr. X or Dr. Y.” What we can do is direct the people toward information which can help them make a more informed decision on their own. 

The list below is one tool that may prove helpful for patients or caregivers to pre-screen potential physicians. This list has been circulated among prominent medical professionals for review:

 Suggested Questions to Ask When Selecting a Physician:

Diagnostic Facilities:

 

1. Does the physician have access to a state-of-the-art Cine MRI facility?
   
2. Does the facility have a demonstrated ability to do complete CSF flow studies of the brain and spinal cord?

 

Experience:

 

1. Number of cases of CM and/or SM per year? As a point of reference, there may be approximately 3,500 decompression surgeries for CM in the US annually.

 

2. Number of cases dealing with the patient’s individual issue (example: tethered cord)?

 

3. Is the practice geared to children and/or adults?

 

4. Is the physician board certified in his/her specialty?

 

Continuing Medical Education Pertaining to CM and SM:

• Does the physician regularly dedicate a portion of his/her required Continuing Medical Education (CME) to CM/SM and related disorders topics?

 

• What medical articles does the physician suggest you read if you would like to gain a better understanding of the disorders and treatment options?

 

Treatment Philosophies:

1. Does the physician monitor non-surgical patients?

 

2. Does the physician perform surgery and if not, to whom does he/she refer?

 

3. Does the physician monitor the patient after recovery from a surgical procedure?
   
4.  Does the physician manage pain for patients who have recovered from surgery or are non-surgical patients?
   
5.  Is there any published work that the physician would recommend which explains the treatment he/she is recommending for the patient?