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BarbaraParticipant
Hey Saria,
I have compared various collars and braces on this post:-http://prettyill.com/forums/viewthread/575/#2883
It will give you more insight on what works and what doesn’t (my problem is similar to yours)
BarbaraParticipantAny instability in this area could be causing a ‘pincer’ action on the underlying brainstem/spinal cord, see the 2 dots.
This could cause turbulence in the flow of cerebro spinal fluid, as well as irritate the underlying brainstem/spinal cord.
Whilst you’re waiting for further appraisal, my advice would be to wear a Philadelphia collar (with linings!) 24/7. Persevere with it (because it is cumbersome) but notice the improvement, some might be immediate and other symptoms will subside over time.
BarbaraParticipantYes, see the post I’ve just replied to, I think you might have the same.
BarbaraParticipantIt’s also important for you to observe the following:-
Forget working with the body bent forwards, or with your head down (in flexion) find another way;
Help your head to stay as balanced on the body as possible (sit up straight – no slouching!);
Look at ways of doing your tasks sitting down, wherever possible (this puts head less into ‘flexion’);
Sit opposite the person you are speaking to always, never keep your head/neck at an angle;
Unstable Cranio-cervical joints need support – wear a Philadelphia (or similar) collar;
Your computer screen & your work need to be elevated, so you are looking straight forwards and not hanging head in flexionBarbaraParticipantThe green line is over what looks like a ‘pannus’ and the purple dot shows that the posterior arch of your C1 vertebrae may be slightly more forwards than it should be, these both suggest some cranio-cervical instability. The yellow lines indicate a loss of ‘lordosis’ of the upper cervical spine.
You may have collagen issues or you may be blatantly hypermobile, or you could have had an injury at some point in your life that was more serious than you thought it was. Either way you have to consider how to manage this. Any injury needs bracing immediately (trust me on that one!)
I suspect that your symptoms are variable, sporadic and intermittent because this is what is usually found with this kind of condition, as whatever part of the brainstem/spinal cord is irritated depends very much on your head position and degree of tilt. Symptoms can also be exacerbated by any degree of raised intracranial pressure.
You need loads of vitamin C to help repair defective collagen and I don’t mean gulp down a pint of orange juice because, your body does not store vitamin C apparently, so only a little will be used and the rest will be wasted. You need to take a little and often throughout the day, to give your body a fighting chance.
BarbaraParticipantHi Casey,
Just a couple of observations here, first, the red line intersects your cerebellar tonsils but only very slightly, certainly not to fit the criteria of Chiari 1 but, your cerebellar tonsils are what’s referred to as ‘low lying’, which can interfere with the free flowing of cerebro spinal fluid at the cranio-cervical junction.The cerebro spinal fluid should be able to pass freely between the head and the spine, if it is interfered with in any way, it can cause problems, particularly if your cerebellar tonsils act’s as a ‘bung’ at the cranio-cervical junction, this can contribute to raised intracranial pressure, which wouldn’t show up with a lumbar puncture. NEVER let them do a lumbar puncture on you.
Lumbar puncture test – DON’T DO IT!
I have heard that some of you, who’ve been lured into having a lumbar puncture have come back with a false ‘normal pressure’ result even though you have obvious symptoms of raised intracranial pressure. Worse still, due to the reduction of spinal CSF pressure, the cerebellar tonsils have ‘bunged up the plughole’ so to speak and this then causes worsening symptoms. So you don’t just get a false test result but you’re made much worse – avoid it at all costs. There are non-invasive methods.BarbaraParticipantHi Kat4,
I see a Chiari Malformation too, with her cerebellar tonsils (lower part of the hind brain) protruding though her foramen magnum (hole in the bottom of her skull) as indicated by the amount below the red line.I see two other potential causes of your daughter’s symptoms also:-
1. She has a retroflexed odontoid (see the orange dot) this is where the C2, the peg bone near the top of the neck is bent backwards towards the brainstem. People can have this and have no symptoms but ……..
2. She MAY also have cranio-cervical instability (see the length of the green line, this distance seems greater than it usually is) but a series of other measurements would need to be carried out to be sure. Cranio-cervical instability allows abnormal movement at the cranio-cervical (head/neck) junction, which in people without Chiari may go unnoticed but, in those who have Chiari with their hindbrain herniated into this area, head movement and position can cause many problems, as subtle pressures are applied to this part of the hindbrain and subsequently the brainstem area.
The combination of the two (retroflexed odontoid and cranio-cervical instability) can cause a ‘pincer’ movement on the soft tissue of the herniated hind brain or the brainstem.
Has your daughter had a head or neck injury ?
BarbaraParticipantHey MtD, as far as I’m aware, monocular diplopia (double vision which occurs when just one eye is open) is more likely to be a brain issue. I have it intermittently.
BarbaraParticipantI see a couple of indicators of instability and a couple of anatomical variants which further add to the problem.
First the indicators of instability:-
C. Looks to me like the posterior longitudinal ligament has stripped away from the back of C2.
This ligament is the black line that grips all the vertebrae and holds them firm.
There should be nothing between that black line and the bone.
D. Looks to me like the posterior arch of C1 is jutting further than it should into the spinal canal.Second the anatomical variants:-
A. You may have a short clivus (the bone to the front of the opening in your skull)
B. You have a retroflexed odontoid
Do a search in the box above for further information on each of these two variants.BarbaraParticipantHi MJ,
If I’m not mistaken, those horizontal ridges are Beau’s lines. They occur when you’ve had a bad bout of illness. I recall those being mentioned on the forum before, here’s the post:-http://prettyill.com/forums/viewthread/14/P45/#2112
Hey your fingernails look like mine! I also get small roundish pale coffee coloured marks on my nails – weird.
March 4, 2017 at 6:46 pm in reply to: Pls help read my MRI, AAI from head trauma from a bike accident #6131BarbaraParticipantI have tried to show that the C1 – C2 joint is not ‘seated’ correctly. I haven’t quite captured the left view at the correct angle – but you get my gist.
February 19, 2017 at 4:59 pm in reply to: Pls help read my MRI, AAI from head trauma from a bike accident #6121BarbaraParticipantThe red lines show the lateral aspects of the cervical vertebrae. The purple circles show the lateral aspects of C1 – notice the lack of symmetry between the two sides. Looking at the other 3D CT scans, it’s clear there’s been a rotary shift of C1 on C2.
Having watched the video, if you keep your eye on the joint between C1 and C2, as it passes round, you can clearly see the slight forwards shift of C1 on C2 (on your left) and the more pronounced backwards shift of C1 on C2 (on your right), further confirming this.
February 19, 2017 at 2:31 pm in reply to: Pls help read my MRI, AAI from head trauma from a bike accident #6120BarbaraParticipantThe 3D CT scans are amazing aren’t they, they are certainly a great aid to diagnosis.
My main concern was surviving! With regard to neck muscles supposedly weakening when wearing a collar long term, I can say that in my experience (bearing in mind that I’ve worn this Philadelphia, so called ‘hard’ collar, 24/7 for nearly 10 years) I can say without a doubt that nothing is further from the truth. I remove it daily to either wash, shower or bathe and find I have good strong function of my neck muscles, I can easily hold my head firm without any difficulty or pain and, other than some rotation restriction I had as a result of the fall, can move my head easily in any direction.
Even within the collar you are still using many, if not all of your neck muscles, just not to the extremes you would use them otherwise. The collar will stop you from carrying out any sharp or compromising movement and, during times of sleep (when your muscles would normally relax anyway, leaving the integrity of your neck to your ligaments) you’ll find that they are protected from over-stretching too.
As long as you don’t ‘slouch’ in your collar, it will help maintain your head in good relationship to your spinal column and, aid the free flowing of your cerebro-spinal fluid between the two structures, this flow otherwise can become compromised, thus building up intracranial pressure and, thus either raising your blood pressure, or heartrate – as I said before, as your body tries to get oxygenated blood into your brain area.
Yes, I did suffer fractures and subluxations as well as CCI – all missed – as many are, if you do a google search, you’ll see the percentage missed is quite high! It’s been quite a struggle getting to the truth, I have to admit but, once you know what you are dealing with you can manage it a lot more effectively. It didn’t help that they put the wrong name on my x-ray and failed to give me a CT scan at the time.
The metal body brace I use, in addition to the Philadelphia collar at night, is called a ‘Johnson CTO’.
Having looked at a couple of your CT scan videos, I can clearly see what looks like an ‘Atlantoaxial Rotary Subluxation’
BarbaraParticipantFor vestibular dysfunction
I would have thought a Neurologist should be able to test for this, or specifically an Oto-neurologist, your GP/MD would know who to refer you to.For raised intra-cranial pressure
One way is to have fundus photo’s taken of your eyes, the next time you have them tested at the opticians. Ask them to look for subtle signs of a swollen optic disk.If you’ve had any MRI’s done, occasionally it shows it up with flattened back of eyes but this isn’t a common finding, so it’s not a reliable test.
Don’t accept a lumbar puncture to test for raised intra-cranial pressure, as it can trigger many more symptoms, see
http://prettyill.com/forums/editreply/4251/Plus further info explaining the danger of Lumbar Puncture at:-
http://prettyill.com/forums/viewthread/712/#3966February 16, 2017 at 1:47 pm in reply to: Pls help read my MRI, AAI from head trauma from a bike accident #6117BarbaraParticipantI do have a collar you have mentioned, tried it for days, got a skin rush, so opted to lay down instead, lining with a small towel makes it too tight and suffocating…
I know what you mean, I got an annoying rash within a few days of wearing the collar but the eventual benefits FAR outweighed any teething problems. You need to get some ‘Coolmax’ liners for the Philadelphia collar (you’ll need a couple of pairs, as you have to wash them and the collar every single day, in order to keep your skin in good condition). You’ll see it will be worth it in the end, the progression will slow down and hopefully halt before you start regaining what you’ve lost.
It all takes time my friend but the body is an amazing piece of engineering, perpetually repairing itself – to the best of it’s ability, so if you give it appropriate nutrition and the physical support of the collar it’s got a much better chance.
I wish you all the best.
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