Tracking CCI / AAI MRI & Treatment outcomes

[ehc918]

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

Do you have your report measurements? I'm tracking this info...

 

[brando]

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

I have already had uMRI and it’s been evaluated by Dr G but thanks for the heads up!

 

[Hip]

Started a new thread looking at the issue of supine versus upright MRI scans:

Craniocervical Instability (CCI) Diagnosis: Supine MRIs vs Upright MRIs.

 

[Mere72]

Has anyone with "mild" or "mild-moderate" ME/ CFS tested positive for CCI, AAI et al?

 

[Julia_S]

Has anyone with "mild" or "mild-moderate" ME/ CFS tested positive for CCI, AAI et al?

I am always unsure on where to draw the line with „moderate“ because I am house- and mostly bedbound and unable to take care of my son but I still would not categorize myself as severe. I still experience days where my pots improves drastically and I am able to get out of bed and sometimes even make it to the coffee shop across the street. Only happens once in maybe 2-3 months, but it does happen...

So I guess I am patient with moderate ME and I have been diagnosed with CCI and AAI.

Even though My measurements are abnormal but only like on the edge to being pathological given the criteria measurements for CCI/AAI, my symptoms match the criteria and are being typical for brain stem compression, from what Dr. Gilete told me.

In my last Skype call Dr. Gilete explained via my uMRI imaging that in my case kyphosis of the cervical spine, which I have already been diagnosed with in 2014 is causing several disc hernitation/protrusion and also seems to be the key indicator for instability (I also have subaxial instability) and in my appointment with him in Barcelona he will further investigate wether surgery of the discs with traction and decompression of the spinal cord and nerves could be an alternative option to fusion on the other hand.
Also suspect jugular veine compression needs to be investigated. My spine is unstable in other parts too and I also had surgery on my lower back as well as a few other indicators for EDS so I will get tested for that in Barcelona as well.

 

[valentinelynx]

Has anyone with "mild" or "mild-moderate" ME/ CFS tested positive for CCI, AAI et al?

Like @Julia_S said, I don't know where to draw the line either. I'm certainly not among the severely afflicted who must spend their lives in bed in the dark and quiet. Yet, I feel best when I spend most of my time in bed. I can force myself to work, at a pretty active job (I'm an anesthesiologist), or go on a trip, if it's occasional, but I must pay for the activity afterward.

And, yes, evidence is pointing to me having CCI. Dr. B read my cervical MRI as probable CCI. Traction does good things.

 

[Raemacpherson]

Has anyone with "mild" or "mild-moderate" ME/ CFS tested positive for CCI, AAI et al?

This is my question also. Both Jen Brea and Jeff Wood were bedridden when diagnosed.

 

[Mary]

SEVERAL MORE POSTS UNRELATED TO THE TOPIC OF THIS THREAD HAVE BEEN MOVED TO: HAVE YOU RULED OUT CHIARI OR CRANIALCERVICAL INSTABILITY AS A CAUSE OF YOUR CFS

THE PURPOSE OF THIS THREAD IS TO KEEP TRACK OF ME/CFS PATIENTS WHO HAVE BEEN TESTED FOR CCI/AAI/CHIARI/SPINAL STENOSIS ONLY. GENERAL QUESTIONS AND COMMENTS RE CCI ETC. SHOULD GO IN THE ABOVE LINKED THREAD.

 

[Remi]

Bente from Magic Everyday has AAI according to the London Medserena radiology report. She has severe ME and Lyme. Confirmation by dr Gilete to follow.

 

[Joly]

I received my report from Dr Gilete which included a summary of my symptom questionnaires and the measurements as follows :

The tip of the odontoid peg lies below level of Chamberlain's line.
Not significative cerebellar tonsils ectopia.

Measurements:
CXA: Neutral 156° / Flexion 148° / Extension 160°
BAI: Neutral 0 / Flexion 0 / Extension 0
Grabb: Neutral 4 / Flexion 5,3 / Extension 5,2
Translational BAI: 0 mm
Neutral BDI: 3,5
Extension BDI: 5,75

Rotary AAI looking left and right.

Cervical Subaxial:
Signs of subaxial instability at:
Possibly up to C4-C5. Cinerradiology will be recommended to finally assess subaxial instability.

Impression:
After reviewing [Joly’s] case, though further investigation is needed and
although surgery is the last option to be considered, we think that she could be candidate for:
Occipitocervical posterior fusion stabilization with intraoperative reduction (traction).
Number of levels: depending on DMX or cineradiology once subaxial instability evaluated.

Diagnoses:
Principal diagnoses related to current situation:
1-Craniocervical Instability (CCI)
2-Atlantoaxial Instability (AAI)
3-Subaxial Instability probably up to C4-C5 (to be confirmed by cinerradiology)

~~~​

My measurements are mostly within the normal range but I'm not particularly surprised about that as my neurological symptoms are not often extreme, the worst ones I experience are caused by my significant atlantoaxial instability (which, although I've not had this confirmed to me yet, I believe is actually the cause of my CCI due to a possible pannus formation). I did have a reported brainstem disability index of 85%.

My next step is to have the further testing Dr Gilete recommended (Cinerradiology/DMX, MRV, Ophthalmologic exam) which I am probably going to have to get done in Barcelona as I'm not receiving support here in the UK. I am also looking into consulting with an EDS specialist and possibly seeking a second opinion from Dr Henderson.

 

[JenB]

Yeah, after looking at those measurements, I am confused re: the candidate for surgery part. Which measurement was used to recommend possible surgery?

 

[Joly]

Yeah, after looking at those measurements, I am confused re: the candidate for surgery part. Which measurement was used to recommend possible surgery?

I think possibly the measurements of my AAI given in my radiologist report from Medserena might have been what qualified surgical intervention. They weren't quoted in Dr G's report but were:

Looking to the right, there are 30.5° of rotation of the atlas of the axis seen together with deviation of the odontoid peg to the left and signs to suggest an element of subluxation of the facets of the atlanto-axial joint.

Looking to the left, there are 33° of rotation of the atlas of the axis with deviation of the odontoid peg to the right and dislocation of the left facet of the atlanto-axial joint characteristic of lax ligaments of the craniocervical junction ligamentous complex and resultant atlanto-axial instability.

I was surprised to be given a diagnosis of CCI considering the measurements in Dr Gilete's report, I expected AAI and subaxial instability.

 

[Joly]

My flexion and extension measurements were also flagged on my radiologist report:

In the neutral position, the cervical spine angle measures 30°, altering to measure -20° in flexion and 60.5° in extension.

Normal mean values for the cervical spine angle are; neutral 28°, flexion -12° & extension 32°. The upper limits for normal for flexion are -18°, and for extension 50°.

This is a large degree of movement between flexion and extension and seen together with evidence to suggest laxity of the anterior posterior longitudinal ligament of the cervical spine.

Laxity of the posterior longitudinal ligament is indicated by anterolisthesis at the C2-3, C3-4, C4-5 and C5-6 levels with narrowing of the anterior aspect of the intervertebral disc when the spine is flexed.

Laxity of the anterior longitudinal ligament is indicated by anterior widening of the intervertebral disc space at the C2-3, C3-4, C4-5 and C5-6 levels when the spine is extended.

 

[Joly]

My ADI measurement is also acute, I measured 4.25mm in neutral and it changes in flexion and extension but my scans aren't clear enough to get a good reading - hopefully this is something a DMX might clarify.


(ADI info: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4111952/)

According to this other report (https://www.ncbi.nlm.nih.gov/books/NBK519563/) AAI is often classified in stages

• Type I - Simple rotatory displacement with an intact transverse ligament, stable subluxations can be managed conservatively with a collar.
  
  
• Type II - Anterior displacement of C1 on C2 of 3 to 5 mm with one lateral mass serving as a pivot point and a deficiency of the transverse ligament. Potentially unstable and if asymptomatic, the neurosurgeon should be involved in making the treatment decision.
  
  
• Type III - Anterior displacement exceeding 5 mm. Unstable joint, requires surgical stabilization.
  
  
• Type IV - Posterior displacement of C1 on C2. Unstable joint, requires surgical stabilization.

I think I would be type 2 (maybe 3 on the left) and since I am symptomatic surgical intervention could be justified, but this is speculation on my part as I've done most of this research myself because AAI seems to have fewer sources of accessible info out there.

 

[Benny]

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)

Jeff's surgery was indeed by Dr. Bolognse per this post

 

[frozenborderline]

my parents declined to pay for stem cell therapy from regenexx, for instabiity. as silly as it sounds i was holding out hope that id be able to do some high impact activities post recovery that you cant do with a fusion, even though im 90percent bedridden now and cant do them. they have the money to cover this but do not care.

I also have severe mcas and had to move out of their house bc it was so moldy and cant afford housing long term thats safe, so i cant get surgery even if i wanted to jump to that instead of stem cells. in my heart i am really holding out for stem cells even though i'm miserable enough and respond enough to traction to really merit surgery or a halo asap. The reason why i pushed back my surgery date was not because im NOT desperate and very ill enough to need/deserve it, its because I dont have the support in place plus I was really dreaming of the possibility of recovering through stm cell therapies and thus being able to keep a few of the dreams that involved high impact activity post-fusion. i'm just totally wrecked by this. My parents have been very unsupportive in many ways, but i worked really hard against a lot of disbelief to figure out the cci thing and they wont take it seriously.

 

[ScottTriGuy]

...My parents have been very unsupportive in many ways, but i worked really hard against a lot of disbelief to figure out the cci thing and they wont take it seriously.

How incredibly hurtful in so many ways. They are deepening the trauma of being severely ill. Sorry you're experiencing this, and hope you find a solution.

 

[Julia_S]

I am so sorry and hurting reating this @debored13 believe me, I’ve been there. I am rn 7 days post surgery and my dad just left my hospital room saying „I am proud of you. You did great. Good that you did not listen to us and good that you held on to your plan.“
I still can’t believe I made it. I did fundraise the whole thing with a few but very dedicated friends and my 14 yrs younger sister was the only one in my family to support me.
I hope u can continue to fight for yourself. I’m sending hugs your way.

 

[Mânca]

I am so sorry and hurting reating this @debored13 believe me, I’ve been there. I am rn 7 days post surgery and my dad just left my hospital room saying „I am proud of you. You did great. Good that you did not listen to us and good that you held on to your plan.“
I still can’t believe I made it. I did fundraise the whole thing with a few but very dedicated friends and my 14 yrs younger sister was the only one in my family to support me.
I hope u can continue to fight for yourself. I’m sending hugs your way.

Hi @Julia_S ,

happy to hear that you had your surgery. Hope everything will be just fine.
Could you tell me where you had you surgery (what doctor) ?

thank you and wish you the best.

 

[frozenborderline]

I am so sorry and hurting reating this @debored13 believe me, I’ve been there. I am rn 7 days post surgery and my dad just left my hospital room saying „I am proud of you. You did great. Good that you did not listen to us and good that you held on to your plan.“
I still can’t believe I made it. I did fundraise the whole thing with a few but very dedicated friends and my 14 yrs younger sister was the only one in my family to support me.
I hope u can continue to fight for yourself. I’m sending hugs your way.

I’m so happy you made it and hope for you’re recovery to go well !