I’m new to the forum but not new to the condition (EDS, POTS, CCI, etc), which I have suffered the consequences of for the last almost 10 years, since I had a head an neck injury.
Having worn a collar since 2007 and tried several en-route to finding the best. This is my analysis, based on my experience:
2/10 Basic Soft collar – doesn’t cradle the head sufficiently to aid correct CSF flow.
4/10 Aspen collar – unfortunately doesn’t support the natural curve of the neck enough.
6/10 Johnson CTO (Metal Jacket)- excellent support for head but not neck which soon aches.
9/10 Philadelphia Collar – Excellent support for head and natural curve of the neck. It
maintains the head and neck in good relation to each other, aiding CSF passage
through the cranio-cervical junction (between head and neck). I had a gross
reduction of my symptoms from the first day I wore mine, some immediate, some
eventual. Point of note: You do need to wear collar linings with this one!!
Hope this helps, as it might not be the right type of collar that you are using, that’s all,
Forgot to mention, I also have something called a ‘Headmaster’ collar, which is a lightweight, open-frame of a collar, made of fabric coated tubular metal (steel?) which, although it doesn’t cradle the head (other than at the chin) it does support the head somewhat and is better than no collar at all. I wear it for short periods, when my Philadelphia collar gets overbearingly warm, as it lets the air get at my skin (ideal for this hot summer weather we’re having in the UK) but I only wear it when I’m sitting still. It wouldn’t be any good for my CCI condition, if I was doing something more active and it certainly isn’t good enough to support me overnight.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella (Oct 2002) Fully Blown Empty Sella (Oct 2004); Whiplash Associated Disorder (WAD); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Retroflexed Odontoid; Stretched/Elongated Brainstem; Vitamin D deficiency; Ehlers Danlos (EDS) type 111; and now Osteoarthritis!