1) if any other members have suffered car accidents injuries, or other sudden traumas?
Yes, I had a backwards fall in 2002
2) how their injuries presented,
Initially, ferryboat dizziness for 9 days + lots of fleeting weird symptoms, which became more and more
Poor temperature regulation and other autonomic issues
Lots of cognitive issues – poor short term memory, easily overwhelmed with info, loss of concentration
Weird eye problems – double vision, blurry vision, uneven pupils, photophobia
Ear problems – tinnitus, pulsing, lorry sound (in low gear)
Sensory issues – numbness, tingling, temporary paralysis, sensory loss,
Loads of different types of pains, stinging, burning, sharp pains, severe pains, low-grade annoying pains
Skin issues, dry skin, loss of plumptiousness, easily split or made sore, slow healing
Arrythmias – bigeminy, trigeminy, chest tightness when standing (diastolic BP always over 90 when this happens)
I’ve probably missed loads out but you get the picture!!
3) what tests/imaging scans were helpful in diagnosing their injuries?
Mid sagittal view MRI’s in Neutral, Flexion and Extension – Upright MRI’s the best for these
See my example MRI at
Fluid above the brain (Oedema/hydrocephalus)
Herniated hind-brain (Cerebellar Ectopia)
Flattening of the pituitary gland (Empty Sella, or Partially Empty Sella)
Any abnormality of the odontoid peg (i.e. retroflex odontoid)
Any abnormal angles of the various cranio-cervical junction components
Cine MRI – to check for restrictions in CSF flow
Eye tests – Close scrutiny of the optic disk (Papilledema/Optic disk swelling, a sign of raised intracranial pressure) + Dr Driscolls list
7 day Holter monitor to catch intermittent arrythmia
Sleep study to specifically look at levels of sleep achieved (many rarely go into deep sleep)
4) what difficulties they’ve had specifically because of having EDS/HJS?
I wasn’t aware I had EDS prior to my accident (even now I don’t have blatant signs). One specialist didn’t think I could have suffered the injury because he said the ligaments at the craniocervical junction are stronger than bone, so bone will break first (I would argue that that is not the case in people with EDS).
5) what worked for them in terms of treatment, pain management and healing?
A philadelphia collar to hold the head in good relationship to the neck to improve CSF flow, brought the biggest improvements
Pharmacological pain management for me was useless (other than anaesthetic!), Vit D is good, so is HRT (for me)
You have to develop your own pain management strategies, what helps me with pain is:
Keep cold areas warm
Diamox to reduce intra-cranial pressure
Vitamin C supplement to aid collagen renewal
Vitamin B multi, to help improve energy
Hope some of this helps