Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 84 76.4%

  • Negative

    Votes: 26 23.6%
  • Total voters
    110
B

bombsh3ll

Senior Member
Messages
287
Joly said:
I've seen quite a few accounts of people with CCI also having jaw issues. Have you looked into Temporomandibular joint syndrome (TMJ)? Jaw misalignment can also be caused by AAI or CCI and this can itself create a whole host of painful issues.
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I had no problems with my jaw until trying very gentle upwards traction on myself - I have been diagnosed with cranial settling by Dr Gilete. I placed my hands around the side of my head, partly under my jaw, & lifted. Since doing that the right side of my jaw has been clicking when I eat. It is not painful, but does lend weight to the lax ligaments theory. Prior to this I did not believe I had any laxity.

Joly said:
Tight neck muscles can also be the result of ligament laxity, the muscles contract to overcompensate - not due to inactivity necessarily, this can be an indication of instability. My neck muscles are very tight and painful and I have CCI and AAI.
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Mine too! Again I did not have a painful neck (although I did have severe headaches) until after CCI came onto my radar & wondered if I have been consciously/unconsciously holding my neck in a rigid position because of it. Perhaps it is just another symptom. Certainly my head does feel "heavy" & hard to hold up - I need to sit with head support.

Does anyone find wearing a collar helpful? I tried an Aspen Vista but found it too uncomfortable. I may try a softer one but am concerned about causing further weakness.

B xxx
 
H

HansG

Messages
57
Location
Germany
Here're my measurements from Dr. G: (placed it in the table from here (PR) and here (MEpedia))

1565101788774.png


"Rotary AAI looking left and right."

"...meets [...] international criteria [...] CCI and [...] AAI."

"Signs of subaxial instability [...]. Cervical cinerradiology [...] recommended [...]."
 
H

HansG

Messages
57
Location
Germany
I'm struggling with BAI and Cerebellar Tonsil Ectopia, because my own measurements differ a lot in theese cases. I think this is because basion and ophisthion beeing not very obvious (0.6 T Upright MRI) in addiotion to my untrained eye.
 
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Y

Yuno

Senior Member
Messages
118
HansG said:
I'm struggling with BAI and Cerebellar Tonsil Ectopia, because my own measurements differ a lot in theese cases. I think this is because basion and ophisthion beeing not very obvious (0.6 T Upright MRI) in addiotion to my untrained eye.
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How did Dr. G measure cranial settling? Did you go to Barcelona and did a DMX Scan?
 
J

Jenc

Messages
49
I was diagnosed with ME/CFS in April 2018, having been ill since fall 2015 with numerous co-morbidities subsequently diagnosed

In early August 2019, with imaging from uMRI at Medserena in London, Dr Gilete diagnosed me with
1-Craniocervical Instability (CCI) 2-Atlantoaxial Instability (AAI) 3-Cerebellar tonsils descent

As with others, candidate for surgery as last resort: Occipitocervical posterior fusion stabilization with intraoperative reduction (traction). Number of levels: depending on DMX or cineradiology once subaxial instability evaluated.

Recommended collar for travel (bus, car, plane, train) and to avoid high risk sports - as if I could do them at all!

Arranging to see Dr Gilete and will also seek 2nd opinion though haven't decided with whom yet.

For any other London/UK based folks, I'd be happy to share (and interested to know of) any local useful consultants, hypermobility physios, NHS successes-if this is on another board, I'll gladly take that link!
 
pattismith

pattismith

Senior Member
Messages
3,988
M

MEPatient345

Guest
Messages
479
tornerose said:
though her functional level hasn’t improved (yet), she believes that she would have deteriorated without the surgery. You can follow her on this page (it’s in Norwegian): https://www.facebook.com/groups/215543282705065/?ref=share
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I am already in touch with her. She told me that she doesn’t necessarily identify as an ME patient but as hEDS/ severe POTS. but she did have PEM (she said worse after every activity). So she sounds like an ME patient. She says that since surgery she is less tired, less brain fog, can tolerate light and sound and social activity. So she does seem to be doing quite a bit better, if not fully recovered.
 
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T

tornerose

Messages
30
mattie said:
Please keep this thread clean / clear. Use it only to take the Poll and for sharing your CCI AAI diagnosis and / or treatment outcome.
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Just a thought... Should this thread be tracking treatment outcomes only (among those diagnosed), or can it also include outcomes among those diagnosed who choose not to have or don’t get access to CCI specific treatment? It seems important to get an idea of what would/can happen in the case of no surgery (the counterfactual case), and pwME&CCI who do not have any treatment make up a comparison group.
 
Y

Yuno

Senior Member
Messages
118
valentinelynx said:
Sorry if this is off-topic. It seem relevant to me. Is anyone aware of anyone with ME/CFS who has had surgery for CCI who has not improved (aside from the unfortunate person with vascular EDS who died after surgery)?
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I talked to Amy, Dr. Gilete’s assistant and she said that there was a male ME patient, who was now 3 month after surgery and had not seen any improvements.
Apparently he was only moderate and Dr. Gilete advised against surgery, but he was very insistent.
 
B

borko2100

Senior Member
Messages
160
If neck traction and / or stabilization doesn't improve symptoms, the probability of the surgery helping is quite low IMO.
 
H

HansG

Messages
57
Location
Germany
Yuno said:
I talked to Amy, Dr. Gilete’s assistant and she said that there was a male ME patient, who was now 3 month after surgery and had not seen any improvements.
Apparently he was only moderate and Dr. Gilete advised against surgery, but he was very insistent.
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@Yuno Very interesting. Do you know anything about symptoms and measurements of this unfortunate guy?
 
valentinelynx

valentinelynx

Senior Member
Messages
1,310
Location
Tucson
Thank you everyone for the helpful responses! So far the answers I'm seeing are indicating only one possible case with no significant improvement: the male patient that @Yuno heard about from Dr. Gilete's assistant, who was "only moderate". I would describe myself as "only moderate" and yet I am unable to continue my career, and feel that I'm pretty useless in my present condition. It would, of course be helpful to know the details of that patients' presentation and if he had experienced positive effects from traction. Does Dr. Gilete perform invasive traction before proceeding with fusion? Another interesting question is, what is the longest period an ME/CFS patient has been ill and recovered after CC fusion?

I was looking at a slideshow from Dr. Henderson called "Five-Year Follow Up of Craniocervical Fusions". The patients were largely EDS patients I believe. None were identified as ME/CFS patients. Only 30% reported improvement of fatigue post-op (see slide at 21 min). The symptoms that did improve in most patients are those one would specifically associate with brainstem compression: vertigo, headaches, balance issues, neck pain, muscular weakness and such. Also, few patients resumed work or school post-op. They attributed their inability to work to residual symptoms from connective tissue disorders such as musculoskeletal pain, POTS, GI disorders, and fatigue: the precise symptoms that many of us would hope to have resolved! Yet, those ME/CFS patients who have to date had the operation and improved are reporting resolution of these symptoms. I'm wondering why the discrepancy.
 
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