Karina's instabile Halswirbelsäule und Ehlers-Danlos-Syndrom

Karina's Cervical Spine Instability and Ehlers-Danlos Syndrome

Karina's Cervical Spine Instability and Ehlers-Danlos Syndrome

  • Startseite
  • For Beginners
    • Why the zebra butterfly logo?
    • What is a cervical instability?
    • What is the Ehlers-Danlos syndrome?
    • The first steps
    • How can I find additional information?
    • Experiences
      • My story
      • Stories written by others with cervical spine instability and/or EDS
      • My Proloexperience
      • Proloexperiences written by others
      • My experience with diagnostic tests
      • Experiences with diagnostic tests written by others
      • My experience with therapies
      • My symptoms
      • My experiences with Ehlers-Danlos Syndrome
      • My experiences with Dysautonomia
      • My experience with Mast Cell Activation Syndrome (MCAS)
      • My experiences with helpful aids for Ehlers-Danlos Syndrome
    • How do I cope with being sick?
    • Chronic illness and friendship / family / partnership
    • Misdiagnoses
    • Why chronically ill people are extraordinary strong
    • Master your appointment – Be the professional patient
    • Examples of my „lists“
    • Traveling with EDS and comorbidities
    • For physicians
    • Why participate in clinical studies?
  • Anatomy
  • Ehlers-Danlos Syndrome
    • EDS hypermobile type
      • EDS hypermobile type diagnostic
      • Tenascin X B Gene
      • TPSAB1 Gene
      • EDS comorbidities
        • Dysautonomia and EDS
          • Postural Orthostatic Tachycardia Syndrome (POTS)
        • Mast Cell Activation Syndrome (MCAS)
        • Chiari / Cranio-cervical instability (CCI)
        • Neuropathy and other neurological problems
        • Sleep disorders
        • Cerebrospinal fluid leaks (CSF leaks)
        • Tarlov cysts
        • Other comorbidities
        • Summary of EDS comorbidites as described in the literature
    • Helpful aids for EDS
    • EDS and surgeries
    • For physical therapists
  • Causes and Symptoms
    • Marfan Syndrome
    • Loeys-Dietz Syndrome
    • Rheumatic diseases
    • Lyme disease
    • Down Syndrome
    • Accidents / Chiropractic
      • Whiplash injury
    • Hurler Syndrome
  • Diagnostics
    • Team „cervical spine instability“
    • 3D CT Scan in Rotation
    • X-ray in flexion and extension
    • Upright MRI
    • DMX – Digital Motion X ray
    • Angles which should be measured
    • Pannus / Retroodontoid pseudotumor
    • Atypical forms and other findings of the cervical spine
    • Additional Diagnostic
      • Otoneurology
      • Positron emission tomography / PET scan
      • Neurovegetative Diagnostic
      • Pharmacogenetic
      • Sleep study
      • Duplex A. basilaris/vertebralis
      • Diffusion Tensor Imaging
      • Cervical traction
      • Neck brace
  • Therapy
    • non-invasive
      • General Information
      • Cervical brace
      • Isometric Exercises
      • Med X Training
      • PNF (proprioceptive neuromuscular facilitation)
      • Vojta Therapy
      • Prolotherapy / PRP / Stemcells / BMPs / others
      • Micronutrients
      • Hydrotherapy
      • Pilates
      • Kinesiotaping
      • Brunkow therapy
      • Osteopathy
      • Pain management
      • Other types of activity 
        • Walking on different grounds
        • Tai Chi / Qi Gong
    • invasive
      • General – Cervical spine fusion surgeries
      • Anterior versus posterior surgical procedures
      • Plate systems
      • Alanto-axial versus occipito-atlanto-axial fusion techniques
      • Alternative / new methods 
        • Minimal – invasive fusion
        • Fusion without instrumentation
      • Halo – Fixation
      • Artificial disc replacement
  • Possible consequences of cervical spine instabilities
    • In the literature described correlations
    • Not scientific proven consequences of cervical spine instabilities
      • Amyotrophic lateral sclerosis / Alzheimer’s / Parkinson’s
      • Multiple Sclerosis
      • Fibromyalgia
      • Other diseases that might be connected to oxidative stress
    • Other consequences
  • Publications
    • EDS Publications
    • Marfan Publications
    • Loeys Dietz Syndrome Publications
    • Rheumatoid arthritis publications
    • Down Syndrome Publications
    • Whiplash Injury publications
    • Barre Lieou syndrome publications
    • Tinnitus Publications
    • Vertebral artery insufficiency publications
    • Cervical myelopathy / spinal cord damage publications
    • Fibromyalgia and spinal cord damage publications
    • Diagnostics Publications
    • Non-invasive therapy publications
    • Invasive Therapy Publications
  • Imprint & Privacy Statement
    • Imprint
    • Privacy Statement
  • DeutschDeutsch
Upright MRI of the cervical spine bending sidewards

Upright MRI

Upright-MRI rotational view

Upright MRI Rotation

Upright MRI of the cervical spine in extension

Upright MRI Extension

Upright MRI of the cervical spine in flexion

Upright MRI Flexion

MRI picture of a cervical spine

Static MRI

X-ray of a human cervical spine bent backwards

passive x-ray imaging

X-ray of a human cervical spine bent forward

passive x-ray imaging in flexion

Zebra butterfly logo: Cranio-cervical instability - When it is hard to keep your head held high

CCI

Two pictures of a young woman. On the left is a comparison between 2010 and 2014 where she is climbing and then wears many braces; on the right is the same woman wearing a neck brace. Text: EDS with CCI / invisible / life threatening / disabling
CT scan of the first two vertebra

CT rotation

CT scan of the cervical spine

CT Flexion

CT scan of the upper cervical spine

CT rotation

Digital motion x-ray revealing subluxation of the inferior facet of C1

DMX

Illustration showing ligaments of the upper cervical spine from posterior view.

Ligaments upper cervical spine

Lateral view of neck with facet joints and spinal nerve roots

Lateral view of neck

Anatomical illustration of a cervical spine with impingement of cervical sympathetic ganglion from cervical instability.

Cervical spine instability

3D CT Rendering of first and second vertebra.

3D CT Rendering

3D CT Rendering of first and second vertebra.

3D CT Rendering

3 D CT Rendering cervical spine

3 D CT Rendering

3D CT Surface Rendering of upper cervical spine

3D CT Surface Rendering

Banner Instabile Halswirbelsäule
Text: The shackles that are my disease force me to keep looking down; every day anew, I break these chains, raise my head and make a step forward
a postcard with two pictures of me. On the left: A woman with short brown hair is holding a hand over her mouth. On her hand are the letters EDS. On the right is a woman with a sign saying #Ehlers-Danlos syndrome

Postcard

Text: EDS affects every organ, skin, blood vessels, joints; every system in our body. EDS is much more than hyper mobility. Pain, Fatigue, Muscle Weakness, Gastrointestinal Problems, Arthritis. Cervical Spine Instability, Tethered Cord, Sleep Disturbances, Bleeding. May is Ehlers-Danlos Syndrome Awareness Month. Osteoporosis, Chiari, Mast Cell Activation, Dysautonomia, Neuropathy. No 2 patients are the same - specialists are rare. Considered rare, but only rarely diagnosed.

EDS Awareness Month 2016

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Ein silberner Teil des Skeletts, der den Torso mit Rippen zeigt.

About Me

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Website Logo: Schmetterling, der auch ein Querschnitt eines Rückenmarks ist und Zebrastreifung hat.

Contact

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A woman with short, brown hair and silver ear rings is sitting in a coffee shop and wears a white shirt.

My Awareness Projects

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Karina is holding a sign saying: Yes, we care!
[…]

A Campaign for you to participate! – Care for Rare


Left: A man with grey and black beard, black hair and a grey shirt who is wearing a hat; right: short, brown hair with a neck brace and sweater with cherries on it.
[…]

Tom Beck supports the German Ehlers-Danlos Initiative


Screenshot of the article about my life with EDS
[…]

Jetzt.de published my experiences with medical marijuana:



Screenshot of Lea article about my life with Ehlers-Danlos syndrome
[…]

Article about rare diseases in the German magazine Lea


Screenshot of Ehlers-Danlos syndrome video in Bento
[…]

“Bekennervideo” about my life with Ehlers-Danlos syndrome (German) in Bento: 


Screenshot Podcast Invisible Not Broken
[…]

My first English interview with “Invisible Not Broken”



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