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


1

Patient is a male, 46 years old, had 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 are the main symptoms right after the whiplash.
Therefore a doctor prescribed manual therapy which does not bring any changes.

A few years later performed static radiograph of the cervical spine didn’t show any pathological results.

The general condition of the patient is deteriorating. Additional to the “feeling of getting a cold” symptoms like headache, particularly behind the eyes, night blindness, light and glare sensitivity of the eyes, paresthesia in the facial area, strong concentration problems and left-sided tinnitus occurred.
After years of seeing any specialst group and the very helpful advice of a doctor “I just should relax”, I found a doctor in the north of Germany.

This doctor ordered extensive examinations, in particular a functional MRI, functional x ray, a neurootological and a neurological examination.
The functional MRI showed damaged ligaments mostly in the cranio-cervicale junction, instability of C1/C2, contact of the soft tissue with the spinal cord, a dancing dens syndrom. The Neurootologist showed disturbances of sensory perception, in particular the perception of the space.

The internal doctor showed a lactat acidosis. Therefore he prescribed medication like Vitamins, wich brings improvement with my general health.
The pyhsical therapy like strenghtening the muscles didn’t bring any improvement.

All other symptoms remain or worsen over time.

Because of these symptoms the patient decided to do a prolotherapy in the U.S which sadly wasn’t as successful as I hoped.

The patient is currently doing cranio fascial and cranio mandibular treatments. This shows at least hourly improvements with the head symptoms.

2

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

In the following a whiplash injury is diagnosed and treated with non-steroidal anti-inflammatory drugs and a neck brace for 2 weeks.
Paresthesia and brachialgia persist during treatment. Also neck related headaches that are treated over the years with various analgesics.

A second car accident with whiplash occurred at the age of 30.

The symptoms intensify and are treated in a specialized clinic, first with standard treatments, then with individualized physiotherapy which leads to an improvement.

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

In a follow-up examination in the same hospital a few years later, due to persistent paresthesia, the head rotation is examined again.
The recommendation is “wait and see”.

With around 41 years the patient experienced paresis of both legs for the first time. Again a static MRI didn’t show anything abnormal, just the already known steep position of the cervical spine.

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

On his own expenses the patient finally arrived at a specialized radiologist and a functional MRI was performed.

The 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
With 5 years hernia right side
with 10 years hernia left side

With 11 years

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. 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 always times where I felt good and I thought now I am back, now I am healthy. The times in which is was fine however, became always shorter and I was only able to go for a walk with my dogs, go shopping and clean with long breaks between.

As long as I did things slowly it worked, it was a life like an old woman. When I looked to the right for a long time I felt lightheaded, I got vertigo attacks with motion, constant blockages even with isometric exercises.
After any kind of sport and exercise, or physical work I had blockages with nerve pain, dizziness close to faint.

When I stood bend forward in front of the bathtub and washed my hair my Ischios trembeld and were powerless . Even after yoga or stretching the muscles were shaking and I had no power in my body.
2009 – 2011

Infusion 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 think with chiropractic a fascia was clamped on the right side. For 9 month 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 extremely bent my Atlas dislocated.
I felt a significant rotation of the right pelvis – and that 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 was working extremely on my chest – with the result palpitation – and on the same day the dentist worked on two of my teeth the situation escalated: I almost choked at night. I build myself some roles for 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 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. I was always dizzy, had always vegetative problems. Since then I was bedridden.

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

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

Finally 2013 I got my Ehlers-Danlos Syndrome diagnosis. If I had known it before I had avoided wrong therapies like Infusions and psychological trauma.

Present symptoms:

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

The ligaments of the upper cervical spine and the sternoclavicular ligaments are loose.
Meanwhile, the fasciae shorten so much that I just can open my mouth 2 fingers wide. My throat is getting very tight (often gag reflex ).

Diagnosis:
Ehlers-Danlos Syndrome mixed type (vascular and hypermobile type)
Allergies to dust mites, latex, penicillin
Hashimoto
Mini mitral valve regurgitation
Food Intolerance
Astigmatism
Feet fail settings
Spondylolysis
Joint instability
SI ligaments loose
Cranio-cervicale instability
Bladder dysfunction
Dizziness
Muscular weakness

4

My story starts at the age of 24 years. Suddenly my heart began to stumble and I had shortness of breath for a few seconds. At the beginning it only lasted a few seconds and occured in intervals of several weeks. The intervals became shorter and then it lasted for several hours at one evening. Because of the shortness of breath I was hospitalized. There was only one abnormal finding in the ECG.

The drama then really started only a half year later. Out of the blue I became unconsciousness on the toilet for about 10 seconds. After 2 weeks headaches, dizziness and gait uncertainities began. During head movements, it felt like 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 month I got a number of symptoms which 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 awakeining; 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 you cannot hold it anymore
Back pain, lumbago
Weakness in the legs, feeling as the ground would be pulled out from under your 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 quick
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 month before the symptoms began)
ECG abnormality
small heterotrophy in the brain MRI (diagnosed as an incidental finding)
Anxiety Disorder

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

Physiotherapy
Massage
Heating / cooling
Dorn Therapy
TENS therapy
Wearing shoe inserts
Wearing a neck brace
Wearing a splint
Osteopathy
Manual therapy
Acupuncture
Homeopathy
Classical painkiller
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 done the special diagnostics which is suggested on this website and by other patients yet. Also I haven’t seen the specialists who are recommended. This includes diagnostic imaging like Sandberg x-rays, functional CT and 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 vitamines. In the end we need a combination of several therapies. As complex as the disease, as complex is the therapy.

The typical whiplash after a car accidentdid not happen to me. I only remember a bad fall from my bicycle upside down with about 10 years 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.