Signs you should get tested for CCI/AAI/chiari/stenosis/etc?

Sarah94

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I'd appreciate a clear and simple explanation of what the signs might be that a person should get tested for CCI/AAI/ chiari / cervical spinal stenosis / any other similar things.

My ME is severe and so I'm not going to travel for scans unless there is a clear reason why it might be relevant to me (not just "other ME patients have tested positive").

I can't do a home traction test or trial a cervical collar to see if that does anything. My mum has banned me from trying this as she thinks it is dangerous. (My mum is my carer - although I am an adult - due to my severity, she deals with any parcels which come for me, so she would confiscate if I bought something which she thinks is dangerous.)
 

pattismith

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hello Sarah,

Would you maybe explain your symptoms?

if you have POTS, and typical CFS, brainstem compression is something that should be ruled out (CCI/AAI/Chiari). If you don't have POTS nor OI, but rather Fibromyalgia/CFS (some other autonomic dysfunction may be present as well), cervical stenosis should be ruled out in this case.

Any severe patient should be checked for cervical myelopathy (with or without brain involvement,
some symptoms associated with CCI are lists here, although you don't need to have them all

http://www.thepainrelieffoundation.com/craniocervical-instability/
 

sb4

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Perhaps you could do a very simple test and grab your skull and pull up lightly. If you feel nothing continue increasing strength. If you feel pain / symptom increase, stop, this could be a sign that something is up.
 

Judee

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I have a pillow like this one HERE that a person can use to traction the neck. However, to save money you could try a rolled up towel to use in place of where the foam part on the pillow sits. The tractioning motion of the pillow works by laying on your back with your knees bent, getting the rounded foam part firmly under the rounded part of your neck and then slowly sliding your legs straight. That motion will slide your body slightly lower on the bed and the firm roundness of the pillow (in your case towel) creates a gentle tractioning action.

I did just try this with the towel on my own bed and it does provide a similar tractioning. A couple of things to be mindful of is that the towel has to be thick enough when rolled up to fill in the round of your neck fully (your neck should be fully supported) but not so much that you head can't rest fully on the mattress. Your head should not be on the towel at all when doing this.

I think it is gentle enough that you shouldn't do any harm and easy enough to stop if it is uncomfortable. For me tractioning is uncomfortable. I would much rather just lay with my neck over the towel to support the natural curve of my neck. That feels much more comfortable to me.

Also the towel under my neck was recommended to me by a physical therapist to use instead of a pillow* so again, it should be okay to try unless you've had some type of surgery there or some horrible whiplash or head injury or something, I would guess. (*I don't use his suggestion though because I already have that ergonomic pillow that does a better job for me.)
 
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Hip

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I'd appreciate a clear and simple explanation of what the signs might be that a person should get tested for CCI/AAI/ chiari / cervical spinal stenosis / any other similar things.
CCI, Chiari and cervical spinal stenosis create cervical medullary syndrome (CMS), so if you had any of these conditions, you might expect to experience some of the symptoms of CMS.

Headache and neck pain are some of the most important CMS symptoms from the diagnosis perspective. Dr Henderson in his 2019 paper says that in order to get a diagnosis of CCI and acceptance for fusion surgery you must have:
  • Severe headache and/or neck pain greater than or equal to 7/10 by the visual analog scale for greater than 6 months.
  • Symptoms of the cervical medullary syndrome.
  • Demonstrable neurological deficits.
  • Congruent radiological findings (ie, on your MRI, one or more of your CCI measurements such as CXA, Grabb-Oakes, BAI, etc must be in the pathological range)
 
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Hip

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I can't do a home traction test or trial a cervical collar to see if that does anything.
A neck traction test I can understand might create some concerns, but a cervical collar shouldn't, as this does not place any force on the head, it only immobilizes the head.

If you feel better under neck traction, this suggests vertical instability-type CCI (cranial settling). Whereas if you feel better with a cervical collar, this suggested horizontal instability-type CCI. More info in this post.


Be aware that neck traction and a cervical collar are not interchangeable: they each address different types of CCI, vertical instability and horizontal instability CCI respectively.
 
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From what I've read, these symptoms seem pretty unique to CCI:

- pain and worsening of symptoms when turning head to one side
- feeling that head is too heavy for your neck to support
- back of the skull headache
- symptoms getting worse the longer your head is upright and improving by laying down

Then again, maybe in some cases of CCI people do not get any of those. As with anything CCI is most likely a an issue on a spectrum, i.e. some people get severe symptoms, while others get mild ones, depending on how bad the instability is. But this is just speculation, at this point there is no scientific data to tell for sure.
 

Sarah94

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From what I've read, these symptoms seem pretty unique to CCI:

- feeling that head is too heavy for your neck to support
- back of the skull headache
I suspect the feeling that head is too heavy for neck to support wouldn't be unique to CCI. Severe ME patients may have muscle weakness making any part of the body too heavy to support.

Back of skull headache is not unique to CCI. https://www.webmd.com/migraines-headaches/why-back-of-head-hurts

- symptoms getting worse the longer your head is upright and improving by laying down
Interestingly, I am somewhat the opposite of this. I feel a bit better cognitively when my head is upright (unless my POTS is flaring up).
 

Hip

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Hip, the link you put under cms leads to brainstem disability index..
That's the same thing as cervical medullary syndrome (CMS).

If you look this 2018 paper from Henderson, it says: "brainstem symptoms that constitute the cervical medullary syndrome are listed in Table 1." Table 1 then lists the same CMS symptoms.

I'll paste the brainstem symptoms of cervical medullary syndrome here just for convenience:
Cervical Medullary Syndrome Symptoms
  •  Double vision
  •  Dizziness
  •  Vertigo
  •  Ringing in the ears
  •  Speech difficulties
  •  Difficulty swallowing
  •  Sleep apnea
  •  Snoring or frequent awakening
  •  Memory loss
  •  Choking on food
  •  Hands turn blue in cold weather
  •  Numbness in your arms and shoulders
  •  Numbness in your back and legs
  •  Get tired very easily
  •  Unsteady walking
  •  More clumsy than you used to be
  •  Urinate more often (every 1–2 h)
  •  Irritable bowel disease or gastro esophageal reflux disease
  •  Weaker than you would expect in your arms or hand
  •  Weaker in your legs
To calculate you brainstem disability score, add 5% for each of the above symptoms to you have.



I found it difficult to find a list of the neurological deficits of CCI that Henderson mentions in the above quote, but one presentation pdf document I came across contains a list:
Neurological Deficits of CCI

Tender C1-C2
Decreased gag reflex
Hypoesthesia to pinprick
Decreased vibratory sensation
Hyperreflexia
Dysdiadochokinesia

Romberg
Difficulty with heel to toe walking
Abnormal gait
Weakness
Loss of abdominal reflex
Babinski, Hoffman’s signs
Source: here (midway through document).

One or more of these neurological deficits of CCI are also required before fusion surgery for CCI is indicated.
 

pattismith

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That's the same thing as cervical medullary syndrome (CMS).

If you look this 2018 paper from Henderson, it says: "brainstem symptoms that constitute the cervical medullary syndrome are listed in Table 1." Table 1 then lists the same CMS symptoms.

I'll paste the brainstem symptoms of cervical medullary syndrome here just for convenience:

To calculate you brainstem disability score, add 5% for each of the above symptoms to you have.

.
Thank you for the explanations, however do you know why neither POTS nor OI are include in symptoms for brainstem compression index?
 

Hip

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do you know why neither POTS nor OI are include in symptoms for brainstem compression index?
I don't really know. Maybe it is because POTS and other OI conditions require specific techniques to diagnose, which might be too complicated for a simple patient questionnaire like the brainstem disability questionnaire.

Or maybe POTS only infrequently occurs in those with cervical medullary syndrome.

In this 2018 video at 15:14 Dr Fraser Henderson provides some statistics for how common the various cervical medullary syndrome symptoms are in patients that were going to get fusion surgery:

1562533678771.png
 

Hip

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So if you don't suffer from headache it's unlikely you have CCI?
Those above stats refer to a group of patients going in for CCI fusion surgery.

I understand that headaches and neck pain are key symptoms of CCI, and in fact in Dr Fraser Henderson's criteria for fusion stabilization surgery (found in this 2019 paper) it requires these:
Inclusion criteria for occipital-cervical fusion stabilization surgery

All subjects met the following criteria:

i. Formal genetics evaluation and diagnosis with a hereditary connective tissue disorder (CF)



ii. Signed consent

iii. Severe headache and/or neck pain greater than or equal to 7/10 by the visual analog scale for greater than 6 months.

iv. Symptoms of the cervical medullary syndrome

v. Demonstrable neurological deficits

vi. Congruent radiological findings were in accordance with the treatment algorithm previously set forward, including kyphotic CXA (less than 135°), craniocervical instability (greater than Harris/BAI measurement of 4 mm*), or low-lying cerebellar tonsils or Chiari malformation.

vii. Failed conservative treatment (physical therapy, activity modification, pain medications, neck brace, and in some circumstances, chiropractic, electrical stimulation, massage)

However, as to whether you can have CCI without headaches, providing you have other symptoms of cervical medullary syndrome, I am not sure.
 

JenB

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I never had neck pain. I also had “new onset” headaches at the beginning of my illness, but those subsided.

I cannot say it enough: until my thyroidectomy, I never in a million years imagined I had a problem with my neck or that my cause was structural.

What I did have, that in retrospect was a strong clue, was recurrent episodes of neck and spine stiffness, especially with bad crashes, and an inability to tolerate vibration, getting knocked about my in my wheelchair, knocked about in the car.
 

valentinelynx

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I have a pillow like this one HERE that a person can use to traction the neck.
Interesting... for awhile now (months, years?) when in bed, whether to sleep or sit up to read, I've taken my small Tempurpedic cervical travel pillow (they don't make the little one I bought years ago anymore), bent it over and stuffed it behind my neck. It's only in light of CCI that I see I've been treating myself with mild traction all this time...
 

valentinelynx

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I've heard of quite a few people who get symptom worsening after car rides. Happens to me as well.
I annoy my husband by insisting that I drive whenever we go somewhere together. This is because I feel I have greater control over and ability to anticipate the motions of the car when I'm driving. If I'm a passenger, the bumps, jolts, and angular impulses of the car's motion cause me pain and distress.