September 25, 2013 at 3:52 pm #581AlleyoopParticipant
Hi. I’m new to the forum and was wondering if any other members have suffered car accidents injuries, or other sudden traumas? If so, I’m interested to hear how their injuries presented, what tests/imaging scans were helpful in diagnosing their injuries, what difficulties they’ve had specifically because of having EDS/HJS and being injured (meaning things that wouldn’t likely present/be an issue in those who don’t have EDS/HJS, misdiagnosis because the EDS/HJS is not taken into account, odd symptoms, etc.), and what worked for them in terms of treatment, pain management and healing?
To give a bit of my history, I’m 40 and have Hypermobility-Type EDS. I have always been very flexible, particularly in my back/hips/legs. Though I was flexible, I have had little issue with injury specifically because of my EDS over my earlier life, with the exception of recurrent ankle sprains. With that said, I have been involved in 3 car accidents in the last 14 years that affected my neck, back and hips and in all accidents, I had my foot on the brake at the time of impact and the last 2 were rear-end accidents while I was stopped at a light. The first one resulted in having my si joint jammed for over a year before it was finally diagnosed and fixed. I was able to recover fully from that accident, but have since had 2 more in the last 6 years and sustained similar injuries that have not healed well (I am now 3.5 years past my most recent accident). As a result of my most recent injuries, I now suffer from chronic pain and my back either locks up on me in spots, or is very loose in others and my sacrum rotates and locks out of alignment and I am unable to resolve it without chiropractic care. I can now put my back and hips out before I even leave my chiropractors office after a treatment. I suffer severe muscle spasms, headaches, widespread pain achey pain, but sharp pain in my neck/shoulder, back at various levels, si joints and hips. I have difficulty with walking, sitting, and standing. My symptoms vary greatly during the day, day to day, and medications may or may not help and all have side effects, so it makes it very difficult to make plans and be reliable, as I never know how I’ll be feeling, nor what symptoms will need to be managed throughout the day. I have lost some of my flexibility (I can no longer touch the floor, let alone with my palms, when bending forward with straight legs), but have increased flexibility in places like my si joints. Because of the EDS and the medical system where I live (Canada), I have seen many Dr.’s, specialists, therapists, and tried many different types of treatments, with mostly little or no success and have faced quite a bit of ignorance in terms of the EDS, let alone how it may relate to traumatic injury, have spent thousands of dollars on this, and have had quite the runaround on many issues. I am presently off work due to chronic pain and my injuries (and have been since my last accident), but would like to eventually come to a point where I can return to work in some capacity. I would love to hear if others have had to deal with similar situations to this, and what, if anything, did they find helpful in helping them to recover from, or manage, their issues.
Thanks!September 27, 2013 at 6:17 pm #4438BarbaraParticipant
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
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