• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Cervical Collar for car journeys and temporary relief at home. What do you recommend?

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
Hello fellow neck pain sufferers

My commiserations! I've searched back through threads touching on this topic and yielded no clear view.

I'm bedbound but have had cause to go to the docs / the hospital a few times this year, and the jostling about in the car / ambulance has been somewhat unbearable for my compromised neck.

If anyone has a recommendation to make, between the makes and models of cervical collar for such outings, +/- to a lesser extent, finding some temporary relief from head weight / potentially some cranial -- especially vestibular -- symptoms for short periods at home, I'm all ears. Pun unintentional.

If it helps, my cranial issues are exacerbated from turning my head horizontally i.e. looking left or right, from straightening my spine to adjust my posture, or from neck extension i.e. looking toward the ceiling.

So those are the movements I'd be hoping to limit, as well as stabilising / taking some of the weight off my skull, ideally. Neck flexion is comparatively ok.

Thanks in advance,
W
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
Hi Folks

So, I have an opthalmological test on Saturday to check for raised intracranial pressure, which will necessitate a country road car journey of the type I generally avoid due to to the trauma it causes to my neck.

Searches for 'Philadelphia collar' on Amazon UK yield almost 400 results.

@StarChild56 @Julia_S @mattie @jeff_w

If any of you nice people happens to have the resources to help me narrow down what exactly it is I'm looking for (e.g. keywords, structural specifications, brand) in such an item, for correct functionality and comfort, I would be incredibly grateful.

But! I am very aware that most of you are still very much in the thick of your surgical recovery period - I will leave reading and responding very much to your discretion.

All best wishes,
W
 

Jyoti

Senior Member
Messages
3,373
I was directed by my doctor (ME specialist) to try this one: https://www.breg.com/products/spine-bracing/cervical-clavicle/vista-cervical-collar/ Not sure where you find it in Scotland, or if it would be any better than the Philadelphia collar. I have one of those as well and it is not quite so rigid or supportive as the Aspen, but it has a pretty similar effect on me.

The Aspen is more expensive, so may not be worth the extra money if it is an experiment. It does hold one's head and neck pretty stable. Both the Aspen and the Philadelphia had negative impacts on me, but I am not as vulnerable as you are. I wish I could send you one of mine!
 
Last edited:

Jyoti

Senior Member
Messages
3,373
Both the Philadelphia and the Aspen (and the Miami, I believe) are adjustable; they come in two pieces, back and front, that fit together with the circumference somewhat determined by how tightly you secure the velcro straps. I think the Philadelphia comes in S-M-L as well. I had the Aspen fitted by my PT to make sure I had it on right, I think you can be pretty sure that you can get the sizing correct.

However, @Rufous McKinney, trying one and wearing it is the only way to know if it will help. I had high hopes but apparently with my particular cervical mess they not only did not help much but after a while began to make symptoms worse.

Long story short--I am glad I tried them, sorry they didn't help. Is that not the oldest and most oft-told story in our canon? Grrrrrrr.
 

mattie

Senior Member
Messages
363
I had some luck with the Aspen Vista collar. It did help with car travel.
It is easy to adjust so it will fit in most cases.
Others have reported that harder collars worked better for them.
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland

I had some luck with the Aspen Vista collar. It did help with car travel.

It is easy to adjust so it will fit in most cases.

Others have reported that harder collars worked better for them.

Thank you, @Jyoti and @mattie both. This input was very helpful indeed. Hard to know where to begin with these things, without a supporting clinician, but patient experiences are even more valuable.

Both the Aspen and the Philadelphia had negative impacts on me ...
I had high hopes but apparently with my particular cervical mess they not only did not help much but after a while began to make symptoms worse.

@Jyoti, may I ask, was it that using them weakened the muscles supporting your head, or another issue? I'd also like to know what you went into collar use hoping to achieve, which didn't come to pass.

Please don't feel pressure to disclose anything you're not comfortable with sharing. All info from more seasoned collar users is very useful at present.

I am not as vulnerable as you are. I wish I could send you one of mine!

Thank you, that really is a very touching thought. Were my car journey not so soon I might take you up on that!

Thank you also for your tactful allusion to my functioning level - before joining the board, I hadn't so much experience in everyday life, which acknowledged my situation. I found that small consideration very soothing! It's appreciated.
 

Jyoti

Senior Member
Messages
3,373
@winterschlaf, I am still collecting information about what precisely is going on in my neck. The wheels of western medicine can grind slow, especially when you confound the doctors. That having been said, I can tell you that after a brief improvement in symptoms when putting on the collar--perhaps 10 minutes--my dysautonomia and general sense of malaise worsened and removing the collar brought immediate relief. I can only guess that whatever is pinched or compressed in my neck was impinged upon more by the collars. My doctor surmised that I may have thoracic spine problems as well and given that these collars brace against shoulders and scapula in order to lift the head marginally, that might be part of my problem.

In short--I have no idea why they didn't work for me (and would be delighted if anyone here has any thoughts or experiences of their own to share) though I tried many times, each one with renewed hope and optimism. Traction works for me like a miracle as long as I am in it. But cervical collars, not so much.

It does make sense, though, that if you are really done in by car travel that stabilizing your neck could reduce the impact. Even if it isn't THE answer, it seems likely that it will help, as it did for Mattie. Please let us know what you end up doing and how it goes for you!
 
Last edited:

Binkie4

Senior Member
Messages
644
https://www.amazon.co.uk/gp/product/B074DG55RF/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I bought a Philadelphia collar for long car journeys that had started to cause vertigo, nausea etc, sufficiently bad to close me down for two weeks. It helps but doesn’t resolve the problem totally. I avoid car travel if I can but this certainly helps if I need to go by car. I also use it if pushed in my wheelchair over rough ground. It prevents the worst of the jiggling in the neck area.
Easy to fit on - fastens with Velcro.
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
@winterschlafI can tell you that after a brief improvement in symptoms when putting on the collar--perhaps 10 minutes--my dysautonomia and general sense of malaise worsened and removing the collar brought immediate relief.

Interesting, possibly enlightening (?) but how bitterly disappointing also! To know so quickly that this intervention wasn't going to have the desired effect.

I can only guess that whatever is pinched or compressed in my neck was impinged upon more by the collars. My doctor surmised that I may have thoracic spine problems as well and given that these collars brace against shoulders and scapula in order to lift the head marginally, that might be part of my problem...

In short--I have not idea why they didn't work for me (and would be delighted if anyone here has any thoughts or experiences of their own to share) though I tried many times, each one with renewed hope and optimism.

To me, your thinking seems really sound. The spine being like a tower with many landings, and a lot occurring at each level, disfunction at multiple levels appears to be a common occurrence, which makes perfect sense when each level of the tower is built upon the next.

Thank you for sharing your experience, it's helped me to keep my expectations in check with regard to the possible temporary relief to be gained from using a brace.

I have a suspicion, based on pain symptoms and the rather unnatural shape of my neck and shoulders at this stage, that I may find I experience similar issues with the brace as you have.

I will be sure to share that info once I've had a go.Thank you for your support and interest.

It does make sense, though, that if you are really done in by car travel that stabilizing your neck could reduce the impact. Even if it isn't THE answer, it seems likely that it will help, as it did for Mattie.

Yeah the main focus is this monster car journey down to Manchester for the upright head and spine scans in 2 wks - it'll be about 550miles total. We'll take the whole thing over 3 days with two overnights to rest.

I only leave the house probably once every 6wks on average, always getting straight into the car to head out over country roads to visit the doc (not me driving!).

The first 10-15 mins of the journey are always glorious - I'm absolutely capitvated by the forest, the wildlife, the hills around my house, but after that time I usually have to grit my teeth and close my eyes against the disequilibrium, nausea and pressure behind the eyes.

On my last journey out to get a flu jab a few weeks ago, I was painfully aware of my head bonking against the seat as we sped along the country roads.

Strong pain in the cervical spine and base of skull is actually a new development for me (rest of skull, jaw, ribs, shoulders and... Pretty much everywhere else nothing new) but now it's got going it's hard not to be aware this probably isn't an ideal thing to be happening.

I think if a collar can at least stabilise my poor noggin a bit down to Manchester and back, it'll pay for itself.
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
https://www.amazon.co.uk/gp/product/B074DG55RF/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

I bought a Philadelphia collar for long car journeys that had started to cause vertigo, nausea etc, sufficiently bad to close me down for two weeks. It helps but doesn’t resolve the problem totally. I avoid car travel if I can but this certainly helps if I need to go by car. I also use it if pushed in my wheelchair over rough ground. It prevents the worst of the jiggling in the neck area.
Easy to fit on - fastens with Velcro.
Thank you @Binkie4 - that was one of the ones I was looking at, and it seems we're in the market for similar aims. I appreciate your input.
 

Jyoti

Senior Member
Messages
3,373
550 miles--what an undertaking! It sounds like you are doing all you can in advance to mitigate the potential (nay, likely) impacts. I hope the trip yields some information that will lead to improvement in your life and life force.
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
550 miles--what an undertaking! It sounds like you are doing all you can in advance to mitigate the potential (nay, likely) impacts. I hope the trip yields some information that will lead to improvement in your life and life force.
Thank you, @Jyoti. I certainly hope so too. With how things are progressing, health-wise, I think it's best I seize the day.

My hope is that what I find out along the way might be useful to others walking this road too.

You've been very helpful with the mitigation process!
 

Jyoti

Senior Member
Messages
3,373
Sounds good, @winterschlaf. I think you made a good choice, given what you know. I really hope it makes the trip less overwhelming, you get your imaging done, and then that opens to the door to a way forward. Why not be bold: I will wish for a dramatic improvement in your health and life!

I know leaping into the future with wildly positive outcomes is a bit risky. Believe me, I have taken that fall as often as anyone else here. But sometimes things really do happen. I can hold for that on your behalf.
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
Sounds good, @winterschlaf. I think you made a good choice, given what you know. I really hope it makes the trip less overwhelming, you get your imaging done, and then that opens to the door to a way forward. Why not be bold: I will wish for a dramatic improvement in your health and life!


I know leaping into the future with wildly positive outcomes is a bit risky. Believe me, I have taken that fall as often as anyone else here. But sometimes things really do happen. I can hold for that on your behalf.

@Jyoti I want to thank you again for your words of support and encouragement. I am struck by how well others in a similar health position can read between the lines and appreciate instinctively some of the thoughts and feelings I might be experiencing, preparing for this journey.

The seeming imperative to strike out from a bit of a corner, in pursuit of possible gains, which means leaving a literally vital energy conservation mode behind. A high stakes risk which needs daily rationalisation to move towards, at least in my case.

And the equally vital importance of keeping hopes and expectations in check, as you mention, because of past falls. I think retaining the ability to encourage others, cautiously, despite our own experiences of dashed hope, is a really precious thing. I'd like to hear about your own experiences some time.

Speaking to others with M.E. has a very different feel than speaking to loved ones who are well. Here, strangers seem to connect with parts of one another which may remain hidden even to those who know us well.

I'd like to write more but screen time has been limited and limiting lately. Your words hit a mark which really needed to be hit, and I took a lot of strength from that, thank you.
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
Practical update: Aspen Vista collar has arrived - have had some quite intense results re: symptoms from wearing it for 30-60 mins on two occasions, some positive, some harder to manage.

Fitting it myself has been a bit of a challenge, even after managing to watch a couple of manufacturer's videos.

More of the head's weight is taken along the jaw / chinplate than I anticipated, with a little on the clavicle, and close to nothing on the more flexible backplate.

This is less than comfortable, in a different way to usual discomfort, which may of course be part of the deal.

Collar users: Do you think that's correct / a matter of anatomy or my bum efforts in fitting? Any tips welcome, tagging @Binkie4 and @mattie just in case...
 

Jyoti

Senior Member
Messages
3,373
I'll be very interested to know how this goes for you @winterschlaf, as you continue to fiddle with it. If you get any clearer about it, please post and let us know. Can you elaborate on the 'intense results?' I had a very hard time trying to describe what mine were, but they were not pleasant. Both in the neck and overall. Still trying to figure out what the actual mechanism might be. We can help one another with this, I am sure.
 

winterschlaf

sleeping satellite
Messages
88
Location
rural scotland
I'll be very interested to know how this goes for you @winterschlaf, as you continue to fiddle with it. If you get any clearer about it, please post and let us know. Can you elaborate on the 'intense results?' I had a very hard time trying to describe what mine were, but they were not pleasant. Both in the neck and overall. Still trying to figure out what the actual mechanism might be. We can help one another with this, I am sure.
Right, so a bit of a small data sample size because I wore the collar only for 60mins the first day -- a lot of which time was spent on fitting & adjustment -- and 35 mins the second. Was intending a fitting only but was really surprised how much occurred during that time.

A very long answer follows - forgive me I was always a terrible editor, moreso since my brain stopped working as it once did! Hope something here is useful to you / anyone reading considering these things themselves.


The good:


* As soon as the chin plate was in place and the weight of my head supported by somewhere other than the base of my skull / my c-spine, I made an internal groan of relief.

I have become aware lately of moves I make unconsciously to try to alleviate pressure in the same areas - things like holding taut a handful of my hair scrunched up by the roots near the crown, which takes some of the weight of my head into my hand.

The collar replicated that mechanism, and it was like taking the weight off of a sprained ankle. Conversely, once I removed the collar, it felt like the same thing in reverse, which was a little frightening, as my neck felt very 'unprotected'.

The overall feeling of the collar was the same I get wearing my hand braces (stiff fabric gloves with a metal skeleton which hold my wrists and thumbs in neutral, ameliorating the inflammation of tenosynovitis, from my thumbs seemingly subluxing) - that an area with injuries in the soft tissue is being immobilised, protected and prevented from further injury. Still sore but no sudden moves.

Actually most of the positive effects were only obvious on removing the collar. Within the first 120 seconds of doing so:

• The volume of my tinnitus increased massively, like someone inexorably turning up a dial

• Same thing for pulsatile tinnitus

• My ears, especially my more impaired left, felt as if they were filling with liquid, becoming muffled and pressurised, filled with the echoing of my pulse

• Same goes for the pressure in my eye sockets / brow / behind my eyes

• All the above symptoms, plus the "fading" that comes from changing head position, returned

• A sense of calm, purposeful wellbeing dissipated (saw you and @Malea make reference to this re: traction, @Jyoti. Now I know what you mean!)


Anomalies - need further investigation:


• For the first time in a long time, I couldn't track my own heart rate well through listening to my pulsatile tinnitus, so I measured it seated, standing, and moving around by my bed.

It was: c75 sitting, c105 standing, c115 moving around. Usual measurements are: c90 sitting, c140 standing, & to be quite honest, I'm too scared to measure it moving around. So, 140+. A reduction of 15-25bpm.

Thing is, I took my pulse again later, collarless, and it was still the same as collared. Either the effects of the collar lingered, or my POTS has improved lately through upping my liquid intake by 1L daily, and I hadn't noticed! Will test further.

• That night, I slept through the night for the first night I can remember. I was very confused in the morning when my symptoms diary was empty of entries after 00:00.

Usually I wake to find anywhere between 4 and 10 vaguely recalled entries, detailing wakes with cold sweat, night terrors (audio/visual hallucinations); nausea, liver, neck and joint pain; neurological symptoms like choking, biting tongue, numb hands and feet, twitching limbs etc.

The next night (after wearing collar for 35 mins during day), I woke once around 0400, then was woken by a family member accidentally dialling the house phone at 0445 and after that I couldn't sleep. So that was an incomplete experiment.

Last night (didn't wear collar at all during day), I woke 4x with symptoms, which is average.

• The reason I didn't wear the collar yesterday is I had an almost supernaturally low pain day. It was extraordinary.
These can come out of the blue every 6-8wks, so I don't know if it was really related to sleep, and if that was in turn related to the collar.

Pain became a major characteristic of my M.E. since an allergic reaction to fluoroquinolnes last autumn, which also hastened my cranial and neck symptoms.

But I got to experience a day with "just" standard M.E. symptoms, but low pain levels (neck, head, liver, nerves, all joints and muscles are usually at moderate pain level, with spikes of strong).

My best guess is that (at least) one of a few things going on here:

1- this was just one of these random low pain days which feel like a fluke and are gone as soon again (feeling pretty bad today on account I spent all day sitting up in bed, using my screen yesterday! Ha)

2- 90minutes of collar use over two days somehow miraculously allowed enough inflammation to go down / the free flow of blood, lymph and cerebrospinal fluid into/out of my head for that really short period of time (tend to think of my head as being at the end of a garden hose with a kink in it due to vascular / intracranial pressure symptoms) was enough to make really stunning repairs

(? Seems unlikely but also the uninterrupted nights sleep and the low pain day were quite marked).

3- mood has even more of a bearing on symptoms than even I realised. I was elated and excited after the reduction in cranial symptoms I experienced wearing the collar; nothing else having brought any relief this last year.


Ok but also, the bad -


Particularly notable on the second day, when I donned the collar, less as a fitting exercise, and more because I was in a lot of pain and seeking relief:

• Firstly, the redistribution of my head's weight to my lower jaw and clavicle area, was really sore. As much relief as it gives to my c-spine and base of skull, it's going to be a challenge over a 6+ hour car journey.

• Wearing the collar straightened and lifted a neck which has been bent forward, and a head which has been hanging and cocked to the left for several years. It was very odd to have such a towering perspective on my room.

The rest of my skeleton has zig zagged to fold and hold my frame in such a way as to compensate for this degrading head & neck position; my body clearly prioritising keeping my eyes at the same level despite the angle of my head.

The collar undid this years long odd angle in one fell swoop, and the un-concertina-ing of my deconditioned, long bedbound body, was strongly painful in places.

I very quickly began to limp as my right leg untwisted itself at the hip, and my right ankle has felt very tender and on the verge of injury since. I've been tiptoeing around, hoping not to feel a sprain.

The places where weak supporting muscles were suddenly asked to hold my skeleton straight (waist, ribcage, hips etc) have remained stiff, sore and strained just from those 90mins over 48hrs.


Conclusions:


• I am going to be a very sore person indeed when I arrive in Manchester on Sunday

• I will potentially be protected from the jostling of the journey in the ways I hoped

• Should I ever regain some ability, I'm going to need the patient (as in, accomodating) support of an osteopath or physiotherapist, in order to spend time out of bed. I knew this intellectually, but feeling the extent of my deconditioning yesterday was daunting

• Probably getting ahead of myself here, BUT: If the collar does anything at all to mimic even a tiny part of the stabilisation of a fusion surgery... I feel like I want to say, I'm in.

While wearing it had little effect on PEM, weakness, body pain, malaise etc (POTS, to be determined, MCAS symptoms are still a new observation for me), but I felt perhaps up to a 30% reduction in many of my more bothersome cranial symptoms. Which to me would be sufficient gain to consider undertaking.

Hope it's alright to make such a statement here - I know it's an emotional subject for all effected, and hope it's reaching the people who want to be reached, by being contained to this thread.

It's been foremost in my mind for ten months or so, and the results of this collar test were quite unexpected in that area.

Comments and feedback _most_ welcome.

W
 
Last edited: