Ongoing neck problems with normal mri

[Barbara]

Hi Sean,
I remember that feeling, hurt one way when you move, hurt another way when you don’t!

Trouble is, a person can have even a full blown Chiari 1 Malformation (i.e. herniated celebellar tonsils of 5mm or more) and still not have any symptoms, so you can understand, why the medical fraternity see a Chiari 0 and NOT appreciate it’s implications.

I think, there are two anatomical factors at play, which trigger the condition that many of us on here suffer from:-
1. Low-lying cerebellar tonsils (sometimes called Chiari 0), which could be congenital, or caused by something that makes the brain swell (or shift) – i.e. trauma, virus, infection, or something that increases intracranial pressure.
2. Cranio-cervical instability, again a person may just be hypermobile at the cranio-cervical junction (CCJ) or a triggering factor could be head and neck trauma (as in my case)

So you can have Chiari without any symptoms, or you can have Hypermobility (or EDS) without any symptoms BUT, when you have one and then you acquire the other, the trouble begins! This event, in itself, could trigger the onset of the progression of symptoms (many caused by brainstem aggravation or compression). This is further aggravated, if you have a ‘leaning back peg-bone’ in your neck, known as a Retroflexed Odontoid, which I see you have.

A medical sign of instability at the CCJ is a ‘pannus’ which builds up naturally, this is a pad at the back of the odontoid peg, to help try and protect the brainstem from further insult. You seem to have one of these showing on your scan, which to me would suggest you have instabilty there.

Your C4 looks well eroded, like it’s affected by Schmorl’s nodes. Regarding the white dot, if it was chipped bone, it would be the same colour as the bone shows on the MRI. If it was a syrinx, it would be down the central portion and would be the same dark shade as the cerebro-spinal fluid is in this MRI. I was told by a neuro-radiologist, that the white is usually of a ‘fatty’ type nature, so make of that what you will, maybe a small cyst or something like that, I don’t know it’s not for me to say.

Don’t be phased by your neuro being annoyed, it’s a way of stopping you from being inquisitive. Basically, whether it’s from the public purse or from your purse, they are being paid to do a job and should be doing just that – i.e. alleviating your worries, finding out what’s wrong with you and treating you to put it right. If just doing their job is making them angry, then the problem is theirs.

It’s a case of ‘know thine enemy’ – once you know exactly what’s going wrong in your body, you have a better chance of putting it right.
I wish you ‘all the best’
Barbara
(UK)

[seanos]

Thank you so much Barbara, you have put my mind at ease, I just needed a bit of reassuring. It’s great to be know this ahead of the scan. If I find out what that spot is I’ll let you know. Take care and thanks again.
Sean

[seanos]

Thank you so much for all your help Barbara. I think I just needed some reassuring. I feel way better prepared now to face the next battle and get.back to some sort of a normal life. Take care and thanks again.

Sean

[seanos]

Thank you so much for all your help Barbara. I think I just needed some reassuring. I feel way better prepared now to face the next battle and get.back to some sort of a normal life. Take care and thanks again.

Sean

Whoops, brain fog. Forgot I posted already, sorry 🙂

[Barbara]

No worries!

There’s no denying, it’s a long struggle mate but here’s my alphabet list of things that might help:-
COPING A – Z
Alternate sedentary tasks with manual tasks, to give the body chance for recovery in between;
Best to recruit ‘energy saving’ coping mechanisms (i.e. delegate!, or work ‘smarter’);
Cut down on stress (emotional, physical, financial – I know, it ain’t easy!) – avoid conflict;
Drink extra fluids between mouthfuls of food to try and alleviate constipation;
Eat small meals and often, to lessen the burden on the stomach, NEVER over-eat;
Forget working with the body bent forwards, or with your head down (in flexion);
Get someone else to do it, if it means working with your hands above your heart;
Help your head to stay as balanced on the body as possible (sit up straight – no slouching!);
Improve collagen (with Vit C), bone renewal (Vit D), energy (Vit B), stomach acid problems & low blood volume (both need salt, preferably iodised);
Just check you’re not short of minerals too (e.g. Magnesium, Zinc, Selenium, Manganese, etc);
Keep your body warm when it’s cold (layers), or cool when it’s hot (fans, flannels, sprays);
Look at ways of doing your tasks sitting down, wherever possible (this puts head less into ‘flexion’);
Massage is a great way to disperse the lactic acid build up in the muscles;
Never go to the kitchen bin with something important in the other hand !!!;
Only eat foods you know to be fresh, don’t risk a dose of ‘the runs’!;
Prioritise tasks and write ‘To Do’ lists, to avoid overcrowding your own memory;
Quell pain – Yes you do need to take whatever works, to keep pain as low as possible;
Recognise & deal early with physical stressors that make you sweat, i.e. full bladder/bowel;
Sit opposite the person you are speaking to always, never keep your head/neck at an angle;
Take extra care of skin, don’t allow any sores to become weeping or infected;
Unstable Cranio-cervical joints need support – wear a Philadelphia (or similar) collar;
Vibrating massage mat is best used at the first sign of leg discomfort (wiggling legs helps);
Wear full length (closed toe) ‘Support hose’ to aid leg circulation and to try and alleviate any oedema;
X = 10, 10 O’clock – bedtime, DON’T push yourself to stay up, it’s no good for the adrenals;
Your computer screen & your work need to be elevated, so you are looking straight forwards and not hanging head in flexion;
Zzzzzz – Sleeping sitting up, or with the head of the bed raised somewhat, may help lessen your symptoms;

B.

[Author]

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