Stories written by others with cervical spine instability and/or EDS


1

Patient is a male, 46 years old, and suffered from a whiplash injury caused by a car accident 20 years ago. A neck brace and pain medication was prescribed. The patient’s symptoms worsened over the years.

Occipital head and neck pain, dizziness especially at the “early morning” and concentration problems were the main symptoms right after the whiplash.
 Therefore a doctor prescribed manual therapy which did not bring any relieve.

A few years later, static x-ray imaging of the cervical spine was performed, but didn’t show any pathological results.

The patient’s condition is slowly deteriorating. Additionally to the feeling of getting a cold, symptoms, like headaches (particularly behind the eyes), night blindness, light sensitivity, facial paresthesia, concentration issues and left-sided tinnitus occurred.
After years of seeing specialists, and the very helpful advice of one of these doctors  “Just relax”, he found a physician in Northern Germany.

This doctor ordered extensive testing, in particular an Upright MRI, functional X-Rays, a neurootological and a neurological examination.
The Upright MRI showed damaged ligaments mostly around the cranio-cervical junction, instability of C1/C2, contact of the soft tissue with the spinal cord and a “dancing dens” syndrome. The neurootologist showed disturbances of the sensory perception, in particular the perception of space.

The internal medicine doctor showed a lactat acidosis for which he prescribed supplements (vitamins) that improve the patient’s general health.
 The pyhsical therapy, for example the strengthening of my muscles, didn’t bring any relieve.

All other symptoms remained the same, or even worsened over time.

Because of his deteriorating symptoms, the patient decided to try prolotherapy in the US, which sadly wasn’t as successful as he had hoped.

The patient is currently doing cranio-fascial and cranio-mandibular treatments, which leads at least to short-term improvement of his head-related symptoms.

2

45 years old, male, had a car accident as a 20-year-old in which his car was hit from behind with about 50 km/h.

Following a whiplash injury was diagnosed and treated with non-steroidal anti-inflammatory drugs and a neck brace for 2 weeks.
Paresthesia and brachialgia persisted during treatment, as well as neck-related headaches that were treated with various analgesics over the years.

At the age of 30, a second car accident with whiplash occurred.

The symptoms intensified, and were treated in a specialized clinic – first with standardized treatments, then with individualized physical therapy that led to an improvement.

The static MRI didn’t show any abnormal findings except of a kyphosis. The “feeling of instability during head rotation” stated by the patient could not be reproduced with imaging.

During a follow-up examination in the same hospital a few years later, head rotation was examined again. 
The recommendation was “Just wait and see.”

At age 41, the patient experienced paresis of both legs for the first time. Again a static MRI didn’t show anything abnormal, just the already documented loss of cervical curvature.

Another two years later, a more drastic approach was suggested after an additional MRI in the same clinic, “The next time don’t come to me, go straight to a psychologist.”

The patient finally decided to seek out a specialized, out-of-pocket radiologist who performed an Upright MRI .

Diagnosis:

Herniated disc C3/C4 with contact to the myelon when reclining the head,

Disc protrusion with suspected myelon contact C4/C5, C5/C6 and C6/C7;

C1/C2 instability with suspected myelon contact through the dens axis in rotation.

3

Birth c-section
As an infant umblicial hernia
As a 5-year-old hernia right side
As a 10-year-old hernia left side

11 years old:

Fall from a horse on the coccyx (not able to breath, for 4 weeks not able to climb stairs)
A motorcycle hit me from the left side (120 km/h); open leg fracture left, head injury left, dizziness; it took 3 years to walk without limping again

At age 13, a car hit me again. Clavicula on the left side half broken / broken. Always problems with the left arm (venous stasis, blood circulation, numbness). Could not lift my arm, it was bloodless.

2003:
Chronicle Epstein-Barr virus (EBV) of which I have not recovered, with dizziness and fatigue, palpitations, tremor, left arm extremely numb

Thanks to bioresonance, I had times in between where I felt good, and thought I was healthy. However, the times in which I felt fine became shorter, and I was only able to go for a walk with my dogs, shop or clean with long breaks in between.

As long as I did things slowly, it worked; I lived the life of an old woman. When I looked to the right for a long time, I felt lightheaded; I experienced vertigo attacks with motion.
After any kind of sport and exercise or physical activity,  I had nerve pain, dizziness, and felt close to fainting.

When I bent forward to wash my hair, my SI trembeld and were powerless. Even after yoga or stretching, the muscles were shaking and had no more strength.
2009 – 2011

I.v. therapy: iron, vitamin C , HOT, taurine, base infusion, zinc, cysteine

2011

After chelation therapy, extreme dizziness while lying down. Chiropractic necessary. Could not wear high heels anymore, due to lack of muscle strength in the feet.

I believe, chiropractic damaged a fascia on the right side. For 9 months nerve pain; atlas and right shoulder pain. Suddenly hyperthyroidism. No manual therapist could help me permanently.
Several chiropractical maneuver. Either the atlas was shifted to the right side or the left SI joint dislocated. If I bent, my atlas would dislocate.
I felt a significant rotation of the right pelvis – and as if something was too short.
Various therapies: Vitalogy, AtlasPROfilax, gentle chiropractic, extreme chiropractic. It remained the same: either atlas or SI joint blocked – and I could barely walk.

After a therapist worked on my chest – with palpitation as a result – and on the same day the dentist worked on two of my teeth, the situation escalated: I almost choked at night. I built myself a device for in between my teeth, and stretched. Probably too much, as the ligaments maybe torn or overstretched. I went again to the chiropractor – after that my muscles in the neck felt as if they were gone. The ligament damage became worse.

March 2012

Deterioration of the cervical spine, thighs, pelvis and thoracic spine.
Not able to walk anymore. Since then, I am wearing a back brace and was bedridden. I was always dizzy, had always vegetative problems.

Choked repeatedly when lying down.
The tissue was soft, no tension in the body, and also bones and joints.

Sacrum slipped more and higher. While sitting, my spine got worse. The pelvis slipped higher and tilted forward, the SI ligaments became loose, the jaw joints are damaged on both sides.

Finally, in 2013, I got my Ehlers-Danlos syndrome diagnosis. If I had known it before, I would have avoided wrong therapies, and not suffered this psychological trauma.

Present symptoms:

Now two years have passed since the fascia ruptured or slipped. I was bedridden for almost one year, because I felt like my body had no support. Since then, the fascia shortened, and my joints feel a little bit more supported. I can walk with braces in my apartment.

The ligaments of the upper cervical spine and the sternoclavicular ligaments are loose.
However, the fascia shortened so much that I can open my mouth only two fingers wide. My throat is getting very tight (often gag reflex ).

Diagnoses:
Ehlers-Danlos syndrome mixed type (vascular and hypermobile type)
Allergies to dust mites, latex, penicillin
Hashimoto’s
Mini mitral valve regurgitation
Food intolerance
Astigmatism
Feet abnormalities
Spondylolysis
Joint instability
SI ligaments loose
Cranio-cervicale instability
Bladder dysfunction
Dizziness
Muscular weakness

4

My disease history starts at the age of 24. Suddenly, my heart began to stumble, and I experienced a shortness of breath for a few seconds. At the beginning it only lasted a few seconds and occured in intervals of several weeks. But later, the intervals became shorter, and then the shortness of breath lasted for several hours on one evening, which led me to be hospitalized. However, there was only one abnormal finding in the ECG.

The drama really started only half a year later. Out of the blue, I became unconscious on the toilet for about 10 seconds. Two weeks later, headaches, dizziness and gait uncertainities began. During head movements, it felt as if there was a bowling ball flying around in my head and would constantly press against my skull, neck, face, nose, eyes or jaw – depending on the position of my head. First neurological examinations were inconclusive. In the following weeks and months, I got a number of symptoms that persist until now:

Dizziness when moving the head
Dizziness starting from the right eye, in which a strabismus was found
Pressure around the head joints, often radiating to the face (nose, eyes, jaw, neck, front), especially when lying on the cervical spine
Strong pressure to the cervical spine while falling asleep (when the muscles relaxe) leads to autonomic awakening; like the body wants to keep my alive
Cracking of the vertebrae, blockages in the cervical spine, especially in relaxation, cracking of the head joints
Tinnitus
Blurred vision: Visual snow (permanently), sensitivity to light, flickering, seeing stars
Eye pain / pain due to strabismus
Problems with accomodation of the right eye
Circulatory problems (almost blacking out after getting up from a lying position or after bending)
Feeling of standing beside me (blinking or rubbing my eyes makes the eye sight clear for a moment), also influenced by muscle spasm
Neck pain
Permanently muscle spasm of the neck and shoulder muscles
Head feels heavy, as if I cannot hold it anymore
Back pain, lumbago
Weakness in the legs, feeling as if the ground would be pulled out from under my feet
Trouble walking
Numbness of arms and legs, tingling
Vertigo with feeling of being close to unconsciousness
Sudden attack of tachycardia, palpitations which I could feel up to my neck, shortness of breath
Fatigue, lethargy, like the battery is empty very quickly
No stress resistance
Depressive episodes, anxiety disorder due to the symptoms
A true doctors odyssey began. I went through all different kinds of specialists without results.

Diagnosis:

Pectus excavatum (since childhood)
Scoliosis of the lumbar spine
Loss of cervical lordosis
Pelvic tilt with leg length difference
Strabismus of the right eye (aquired in adulthood, was found by an optician a couple of months before the symptoms began)
ECG abnormality
Small heterotrophy in the brain MRI (diagnosed as an incidental finding)
Anxiety Disorder

The typical helpless advices of doctors followed: I should go to a psychiatrist. After 4 years of psychotherapy and antidepressants, it is obvious – even for my therapist – that the symptoms are probably physical. In addition to psychotherapy, all possible therapies have been tried – with more or less success :

Physical therapy
Massage
Heating / cooling
Dorn Therapy
TENS therapy
Wearing shoe inserts
Wearing a neck brace
Wearing a splint
Osteopathy
Manual therapy
Acupuncture
Homeopathy
Classical pain killers
Antidepressants
Strengthening training
Kieser training
MedX therapy (started and currently paused)
Isometric exercises
Running (even with expensive running shoes the symptoms worsened)
Nordic walking
Walking
Autogenic training

I have not yet done the special diagnostics which is suggested on this website and by other patients. Also, I haven’t seen the specialists who are recommended. This includes diagnostic imaging like Sandberg, functional CT scan, Upright MRI and various alternative therapies. Recently, I ‘ve found a doctor in my area that offers the micronutrient therapy by Kuklinski. I feel a little more energy since taking the vitamins. In the end we need a combination of several therapies – as complex as the disease is, as complex is the therapy.

The typical whiplash after a car accident did not happen to me. I only remember a bad fall from my bicycle upside down when I was about 10 years old, and several smaller falls on tailbone and spine (slip on ice, for example). I also suspect a genetic inheritance, because both of my parents are struggling with cervical problems.

Furthermore, my basic condition and my life style in the past have not been helpful: rapid growth, thin body, weak muscles, pectus excavatum since childhood, a lot of sitting in non-ergonomic seats and sleeping on wrong mattresses, little to no sports.

And in the end, several visits to the orthopedics and manual therapists, who all tried something with my cervical spine, did probably hurt me more.