June 13, 2013 at 12:20 am #464
I have EDS and I have been living with neck pain for over a decade. Does anyone have a recommendation for one that they find helpful? I need one that is comfortable enough to sleep in.June 13, 2013 at 1:34 pm #3767BarbaraParticipant
As a sufferer of EDS, CCI & POTS, etc., 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 if
you have Cranio Cervical Instability but some have said it helps. Cost maybe £15.
4/10 Aspen collar – I tried on the ‘dial-up’ type. Unfortunately, in my case, it didn’t
support the natural curve of my neck enough, and allowed it to sag backwards. £90-£100.
5/10 ‘Cushtie’ – Horseshoe shaped neck cushion (sewn at the front with a bit of velcro, to
fasten it and give more support. You can also sew an extra seam around the whole
circumference, to make it even ‘firmer’). This was a godsend for me, after years of
suffering. It was light, comfortable and washable and gave me the first signs that a
collar could help lessen the night-time pain, improve sleeping and be an all round
suitable aid to help ease my symptoms, especially those of pain. It only cost £10.
6/10 Headmaster collar – 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, it stops it from going into flexion 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. Not good enough
to support me overnight though. Cost about £75 from Matrix Seating.
6/10 Johnson CTO (Full Metal Jacket)- excellent support for head but not neck which soon
aches, I have to wear the back part of the Philadelphia underneath it. Very
restricting, so not practical for moving around but great for long journeys. £250+
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. Cost £25 – £30 plus cost of cool-max linings.
Point of note: You DO need to wear collar linings with this one!!
Hope this helps,
(UK)June 14, 2013 at 12:56 am #3769
Thank you Barbara. I appreciate it.June 14, 2013 at 12:42 pm #3770mommabutlerParticipant
Barbra encouraged me to get the “Philadelphia foam cervical collar” and it has worked great for me too. Thank you Barbra! It is going on 5 months now that I have been wearing a collar and this one has worked the best. You can get it on eBay very inexpensively, you can also buy the “coolmax liners” online too, which are needed for comfort especially summer. I used a soft cotton baby blanket at first and it worked fine (cut smaller) between me and the collar to absorb moisture for comfort. My suggestions for comfort are:
Make sure around your neck, you get the one that goes to your measurement size, but it will go bigger, so you have room to adjust for comfort. When you measure chin to sternum make sure you have your chin at the normal level you hold it for comfort when looking straight ahead.
Here is info for the collar in the USA. Hope this helps. Rebecca
How to measure info link
Ebay link Philedelphia collar
Coolmax liner link, make sure to order the size that fits the collar you order. I have 2 to rotate.
http://www.healthproductsexpress.com/Patient-Restraints-Supports/Other-Cervical-Collars/10075-ossur-americas-inc-ort12linerp-liner-collar-philadelphia-style-coolmax.htmlJune 14, 2013 at 2:16 pm #3773
Thanks everyone. This really helps!
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