Author Topic: Information & Resources  (Read 1006 times)

Ryan Ryder

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Information & Resources
« on: August 23, 2015, 10:48:47 PM »
More information/articles on Chiari & related  conditions

http://invisibleillnessforum.com/index.php/board,163.0.html

« Last Edit: January 27, 2016, 01:03:21 AM by Ryan Ryder »

Ryan Ryder

  • Guest
Re: Links to Information & Resources
« Reply #1 on: January 21, 2016, 03:49:06 AM »

Web Resources

The Chiari Institute - Information on CM1 and EDS for the patient and medical professional: http://www.chiariinstitute.com/

American Syringomyelia & Chiari Alliance Project (ASAP): http://www.asap.org

Download a copy of ‘Chiari Malformation and Syringomyelia - A Handbook for Patients and Their Families’: http://www.asap.org/index.php/disorders/patient-handbook/

Chiari Connection International - Chiari & related disorders, including Ehlers-Danlos syndrome: http://www.chiariconnectioninternational.com/

Chiari & Syringomyelia Patient Education Foundation - Conquer Chiari website: http://www.conquerchiari.org/index.html

The Brain and Spine Foundation - http://www.brainandspine.org.uk

The Annconroy Trust - http://www.annconroytrust.org

- See more at: http://www.ehlers-danlos.org/about-eds/medical-information/chiari-1-malformation/#sthash.X4nc0YBQ.dpuf

Upright Health

http://www.upright-health.com


The Chiari Institute

http://www.chiariinstitute.com/chiari_malformation.html


Conquer Chiari

http://www.conquerchiari.org/index.html


Chiari & Syringomyelia Foundation

http://csfinfo.org/videos/


Chiari Malformations

https://rarediseases.org/rare-diseases/chiari-malformations/


The American Association of Neurological Surgeons (AANS)

http://www.aans.org/Patient%20Information/Conditions%20and%20Treatments/Chiari%20Malformation.aspx


The American Syringomyelia & Chiari Alliance Project, Inc. (ASAP)

http://asap.org


World Arnold Chiari Malformation Association (WACMA)

http://community.pressenter.net/~wacma/


The Chiari Care Center

http://chiaricare.com


Occult Spinal Dysraphism and Tethered Spinal Cord

http://community.pressenter.net/~wacma/
http://csfinfo.bmobilized.com/?ref=https%3A%2F%2Fwww.google.com%2F&url=http%3A%2F%2Fwww.csfinfo.org%2Feducation%2Fphysician-information%2Fcongenital-tethered-cord%2F&width=360

Chiari Malformation

(Information For parents)

http://m.kidshealth.org/parent/medical/brain/chiari.html

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Tonsillar Ectopia and Chiari Malformations

upright-health.com

2010-2013

http://www.upright-health.com/tonsillar-ectopia.html

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Chiari Malformation

Timothy C. Hain, MD

American Hearing Research Association

Updated October 2012

http://american-hearing.org/disorders/chiari-malformation/

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Neurosurgical Management ot Hereditary Hypermobility Connective Tissue Disorders

Fraser C. Henderson Sr, MD

EDNF, Baltimore

2014

Slideshow Presentation:

http://www.ednf.org/sites/default/files/Henderson.pdf

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Neurosurgical Management of Hereditary Hypermobility

Dr. Fraser Henderson + Closing Remarks

Dr. Fraser Henderson discusses the neurosurgical implications of hypermobility and connective tissue disorders. From the CSF & MUSC Half-Day Symposium in Charleston, SC.

https://vimeo.com/113719480

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What is Craniocervical Instability?

The Pain Relief Foundation

2015

Craniocervical Instability (CCI), also known as the Syndrome of Occipitoatlantialaxial Hypermobility, is a structural instability of the craniocervical junction which may lead to a pathological deformation of the brainstem, upper spinal cord, and cerebellum. It primarily occurs in patients with Ehlers-Danlos Syndrome and other hereditary disorders of connective tissue.

http://www.thepainrelieffoundation.com/craniocervical-instability/

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CSF Leaks:

http://www.csfleak.info/what-is-a-cerebrospinal-fluid-csf-leak/

http://spinalcsfleak.org/about-spinal-csf-leaks/overview-of-spinal-csf-leaks/
« Last Edit: January 27, 2016, 01:03:43 AM by Ryan Ryder »

Ryan Ryder

  • Guest
Re: Links to Information & Resources
« Reply #2 on: January 21, 2016, 03:49:59 AM »
Further Reading

Bejjani GK Definition of the adult Chiari malformation: a brief historical overview. Neurosurg Focus. 2001 Jul 15; 11(1):1-8.

Javahery RJ, Vanni S, Levi ADO. Chiari I Malformations and Syringomyelia.  Seminars in Neurosurgery 2002; 13(2):119-130.

Milhorat TH, Bolognese PA, Nishikawa M, Francomano CA, McDonnell NB, Roonprapunt C, Kula RW. Association of Chiari malformation type I and tethered cord syndrome: preliminary results of sectioning filum terminale. Surg Neurol. 2009 Jul; 72(1):20-35.

Some HDCT/CM1 patients have been found to additionally have tethered cord syndrome (TCS). The size and volume of the posterior cranial fossa were found to be normal in the above study, with a comparatively large foramen magnum, and elongated brainstem. The conus medullaris was in a normal position (except in very young patients), and the filum terminale was found to be fine and taut. A diagnosis of TCS was based on the following symptoms and signs: urinary dysfunction, bowel incontinence, low back or leg pain, lower extremity numbness or weakness, loss of deep tendon reflexes of the lower extremities, thoracolumbar scoliosis, equinovarus/ equinovalgus foot deformities, syringomyelia and spina bifida occulta. TCS was found to be more common in patients with only low-lying cerebellar tonsils.

- See more at: http://www.ehlers-danlos.org/about-eds/medical-information/chiari-1-malformation/#sthash.8F0eJ5hq.dpuf