Tracking CCI / AAI MRI & Treatment outcomes

[Joly]

I read of a Dutch patient who had CCI and AAI diagnosed by Gilete from a cervical spine MRI. Not the cranio cervical MRI. Is that the one with the rotational view?

I think imaging of the craniocervical junction may be included as part of a cervical spine MRI in some cases, and if it was a severe case perhaps the AAI was visible in neutral, without the rotational views?

You need the rotation scans to see the degree of rotation of the atlas of the axis when you turn your head to the left and right to be able to assess if the instability is pathological. Mine is, and I have a deviation of the odontoid peg, subluxation on one side and dislocation of the atlanto-axial joint on the other, which was not visible in neutral.

Is it possible that the cervical scan included these images, or they had further scans done after a diagnosis of CCI which is diagnosable from neutral upright and flexion/extension?

 

[Remi]

Thanks for explaining. I checked back and she had the cervical spine with neutral and flexion and extension views and indeed with looking left & right. This was one MRI. In London they do 2, with the rotation on the cranio cervical junction MRI. She did them in Germany, where 2 MRIs are much more expensive than in London.

 

[bombsh3ll]

Looking at the 5 full reports from Dr Gilete so far posted on this thread, in 5 out of 5 cases, it is the translational BAI or translational BDI that is pathological.

Then in 2 out of 5 cases, the CXA was pathological.

This translational BAI/BDI measurement can only be performed on MRI scans with flexion and extension views. So this pathology would be missed in the normal neutral position MRIs used by Dr Bolognese.

I sent Dr B upright scans in flexion extension neutral and rotation & he still said normal. I understand though he may not look for vertical instability in the absence of rotational or horizontal, since it is rare to find alone. I got this from watching his 2018 youtube video.

B x

 

[bombsh3ll]

If anyone can get to a Medserena upright MRI facility, you can ask for the "Dr Gilete EDS CCI package" and they will know exactly what scans you need. They will also copy him the images if you wish. They do not require a doctor referral.

B x

 

[ehc918]

In digging through several threads, this is the info I've found

@jeff_w Ddx w/CCI Jan 2018; had sx, in recovery (assume dx by Dr. Bolognse since in the US)
@JenB Ddx w/CCI Dec 2018; had sx, in recovery (assume dx by Dr. Bolognese since in the US)
@mattie Ddx w/CCI Feb 2019; had sx, partial recovery- Dr. Gilete
@gm286 Ddx CCI/AAI by Dr. Gilete
@bombsh3ll Ddx CCI by Dr. Gilete
@debored13 Ddx CCI/AAI by Dr. Bolognese, confirmed by Dr. Gilete
@tornerose Ddx CCI by Dr. Gilete
@Julia_S Ddx CCI/AAI by Dr. Gilete
@bball222 Ddx CCI Oct 2018- dr unknown
@NaxavisDragonLady Ddx CCI autumn 2018- dr unknown
@StarChild56 Ddx CCI +/- AAI by Dr. Bolognese
@brando Ddx CCI, AAI Chiari by Dr. Gilete
@Yuno Ddx w/cervical stenosis, CCI/AAI, subaxial instability by Dr. Gilete
@Daffodil Ddx w/CCI- dr unknown
@Silencio Ddx w/CCI/AAI by Dr. Gilete
@User891 Ddx basilar invagination, CCI/AAI by Dr. Gilete
@AnkeC Ddx w/AAI/CCI June 2019 by Dr Gilete
@moonell Ddx w/CCI/AAI by Dr. Gilete

Hoping to have more responses and keep this entry updated

 

[Remi]

Jen and Jeff could also be dx ed by Dr Henderson or Dr Patel. Or all of them as 1st, 2nd, 3rd and 4th opinion.

This is from Medserena London.

 

[ehc918]

Oh @Remi excellent! Thank you for this.

@Mere72

@ehc918, yes it's exhausting... pace it out.

Pacing? What’s THAT

 

[kangaSue]

Don't know if it's been mentioned but Stanford researchers are looking for people with ME/CFS who are also diagnosed with CCI.
https://medium.com/@jenbrea/stanford-researchers-looking-for-me-cfs-patients-with-cci-9fe6331fa85f

 

[brando]

@Hip

My report from Dr G:

He also reported the following symptoms in relation to brainstem compression, which represents a
45% Brainstem Disability Index:
· Memory loss
· Dizziness
· Vertigo
· Ringing in the ears
· Snoring or frequent awakening
· Tire very easily
· Urinate often (every 1-2 hours)
· Weaker than you would expect in your arms or hands · Weaker in your legs

He also reported
· Headaches
· Fatigue
· Muscle pain
· Joint pain
· Neck pain
· Night awakenings
· Visual problems
· Hearing problems · Tremors
· POTS

On the other hand he reported:
· Sometimes feel ill when I am upright for too long - I'm not sure if that counts as POTS?
· Constant post-nasal drip
His symptomatology seems to clearly correspond to a cervicomedullary syndrome.


The tip of the odontoid peg lies below level of Chamberlain's line.

Cerebellar tonsils ectopia: 11 mm.
Volumetric small posterior fossa.

Measurements:

CXA
Neutral 160°
Flexion 152°
Extension145○

BAI
Neutral 4,9
Flexion 8,7
Extension3

Grabb
Neutral 5
Flexion 5,8
Extension 3,7

Translational BAI: 5,7 mm

C1-C2 neutral misalignent.
Rotary AAI looking left and right.

 

[Hip]

Thanks very much for posting your results rom Dr Gilete, @brando. Looks like your CXA, Grabb-Oakes and BAI are all normal, but translational BAI at 5.7 mm is pathological. Did Dr Gilete diagnose you with CCI, because of that pathological measurement?

Dr Gilete measured cerebellar tonsils ectopia as 11 mm (degree to which cerebellar tonsils protrude out of the skull). According to this source, Chiari I malformation is diagnosed when the ectopia is around 5 mm or higher. Did Dr Gilete say that you might have Chiari?

 

[bombsh3ll]

@brando did Dr G specify a plan for treatment or further investigation for you?

B x

 

[bombsh3ll]

@mattie I hope you are well, do you have any further updates regarding your venous stenosis or ongoing recovery in general from the surgery?

B x

 

[ehc918]

Does anybody know if upright neutral, flex, extension neck X-rays have been used for any diagnosis? I had these 3 X-rays done (specifically for CCJ instability) and they were read as normal. Supine MRI normal. I'm waiting for a referral for upright imaging but wonder if the X-rays were normal maybe there is no structural issue.

 

[frozenborderline]

@debored13 Ddx CCI/AAI by Dr. Gilete

Actually initially diagnosed by bolognese and then got a second opinion w gilete who confirmed this diagnosis.

@jeff_w Ddx w/CCI Jan 2018; had sx, in recovery (assume dx by Dr. Bolognse since in the US)

Jeff initially got diagnosed by the head neurosurgeon at the hospital he was at, if you read mechanicalbasis.org

 

[brando]

Thanks very much for posting your results rom Dr Gilete, @brando. Looks like your CXA, Grabb-Oakes and BAI are all normal, but translational BAI at 5.7 mm is pathological. Did Dr Gilete diagnose you with CCI, because of that pathological measurement?

Dr Gilete measured cerebellar tonsils ectopia as 11 mm (degree to which cerebellar tonsils protrude out of the skull). According to this source, Chiari I malformation is diagnosed when the ectopia is around 5 mm or higher. Did Dr Gilete say that you might have Chiari?

He diagnosed with CCI, AAI and Chiari
edit: sorry, not sure what measurement in particular made him come to the conclusion of CCI

@brando did Dr G specify a plan for treatment or further investigation for you?

B x

He suggested a (last resort) c0-c2 fusion and decompression pending further investigations.
Next steps are cineradiology/DMX to confirm (and also to check for any more destabilised regions lower down) and angiogram. I'm planning on arranging a visit to Barcelona (they close for the entire month of August!) in September where I can have all these done as well as a face to face consultation.
I'll then have uMRI, DMX and angiogram to seek second and third opinions.

I also have an NHS neurology appointment but assuming zero will come from that, as has been the case with every single NHS consultant I've ever seen.

 

[AnkeC]

In digging through several threads, this is the info I've found

@jeff_w Ddx w/CCI Jan 2018; had sx, in recovery (assume dx by Dr. Bolognse since in the US)
@JenB Ddx w/CCI Dec 2018; had sx, in recovery (assume dx by Dr. Bolognese since in the US)
@mattie Ddx w/CCI Feb 2019; had sx, partial recovery- Dr. Gilete
@gm286 Ddx CCI/AAI by Dr. Gilete
@bombsh3ll Ddx CCI by Dr. Gilete
@debored13 Ddx CCI/AAI by Dr. Bolognese, confirmed by Dr. Gilete
@tornerose Ddx CCI by Dr. Gilete
@Julia_S Ddx CCI by Dr. Gilete
@bball222 Ddx CCI Oct 2018- dr unknown
@NaxavisDragonLady Ddx CCI autumn 2018- dr unknown
@StarChild56 Ddx CCI +/- AAI by Dr. Bolognese
@brando Ddx CCI, AAI Chiari by Dr. Gilete
@Yuno Ddx w/cervical stenosis, CCI/AAI, subaxial instability by Dr. Gilete
@Daffodil Ddx w/CCI- dr unknown
@Silencio Ddx w/CCI/AAI by Dr. Gilete
@ElizabethBr Ddx basilar invagination, CCI/AAI by Dr. Gilete
@AnkeC Ddx w/CCI June 2019 by Dr Gilete
@moonell Ddx w/CCI/AAI by Dr. Gilete

Hoping to have more responses and keep this entry updated

@ehc918 -

My dx is CCI & AAI

 

[GlassHouse]

Just looked back on the post in question and I would be interested if anyone knows what kind of immobilizing frames are used for the supine MRI's Dr B requests as opposed to the upright? My uMRI did use frames to hold my head still and fixed for each position and I'm curious as to the degree of difference.

I’m also curious about this because the hospital that did my T3 didn’t use anything to stabilize my head.

Apparently there was a different MRI bed I was supposed to be moved to but they didn’t move me after the brain MRI and I did the cervical MRI in the same bed with no stability or cage for my head. I was in the MRI machine for over an hour and ended up crying from pain at the end because my joints hurt so much and some of the images were blurry.

It’s been a couple of months and I haven’t heard from Dr B so I’m guessing he thinks I don’t have it.

 

[bombsh3ll]

I'll then have uMRI, DMX and angiogram to seek second and third opinions.

Brando, I was caught out by thinking I could get the upright scan that I had missed (rotational) whilst in Barcelona, which ended up costing me a lot. You can get angiogram/venogram and DMX in Barcelona but if you plan to get an upright MRI you would be far better off having it before you go. Dr Gilete will then look at it during your consultation. If you wait until afterwards it costs extra to have it reviewed separately.

B x

 

[Wolfcub]

Moderator notice > Three posts, (1. by Mere72, 2. ehc918, and 3. Mere72) have been moved to Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

Those posts were moved because they were general questions about MRIs. This thread is only to keep track of patients who have already been tested for CCI/AAI/chiari and spinal stenosis.
Posts on other topics should be placed in an appropriate thread. Thanks.

 

[Julia_S]

My diagnose is actually:
CCI
AAI
Subaxial instability probably up to C6 (tbc. By cinerradiology) angled at C3-C4
Cervical kyphosis
Disc hernitation and disc protrusion at C5-C6, C4-C5