Tracking CCI / AAI MRI & Treatment outcomes

[AnkeC]

Yes, I think it’s what @Joly said .... probably Dr G’s 1st language not being English.

I take it as .... I didn’t get an upright MRI like I usually do, so I am working with what I am given.

I chose not to get an upright scan because it would have meant flying interstate. Since I got the mri and ct for free I chose that as my first option.

Today I will try to get a referral for the MRV, which i’ll Have to pay for. And there is not DMX available in Australia from what I understand, so I won’t be able to do that.

@Hip I saw that everyone else has BAI (horizontal instability) measurements, and apparently BDI (vertical instability) is rare ...of course it is *sigh*.....

If I consult a neuro surgeon in Australia (for 3rd opinion and to organise possible aftercare in Aus) I might get an upright MRI, because they are in the same area.

 

[Hip]

@bombsh3ll, @Silencio, @Yuno, @moonell and @AnkeC: you all seemed to score quite high on the Brainstem Disability Index, a 20 symptom questionnaire shown below. Your scores ranged from 40% to 95%.

The Brainstem Disability Index symptoms are those of cervical medullary syndrome — a syndrome caused by brainstem or spinal compression.

One thing I am curious about: these 20 symptoms of the Brainstem Disability Index, did you have some of these symptoms even before you first developed ME/CFS, or did these symptoms only start to manifest once you were hit with ME/CFS? Because I am wondering if you may have had some cervical medullary syndrome going on even before ME/CFS appeared.

By the way, did you all develop ME/CFS after an infection (flu-like illness, gastrointestinal illness, etc)? Or did you have other triggers of ME/CFS?

Brainstem Disability Index Questionnaire

Scoring is calculated by giving 5% for each symptom that you have. These symptom are all cervical medullary syndrome symptoms.

Double vision
Memory loss
Dizziness
Vertigo
Ringing in the ears

Speech difficulties
Difficulty swallowing
Sleep apnea
Snoring or frequent awakening
Choking on food

Hands turn blue in cold weather
Numbness in your arms and shoulders
Numbness in your back and legs
Gets tired very easily
Unsteady walking

More clumsy than you used to be
Urinates more often (every 1-2 hours)
Irritable bowel disease or gastroesophageal reflux disease
Weaker than you would expect in your arms or hand
Weaker in your legs

 

[AnkeC]

@bombsh3ll, @Silencio, @Yuno, @moonell and @AnkeC: you all seemed to score quite high on the Brainstem Disability Index, a 20 symptom questionnaire shown below. Your scores ranged from 40% to 95%.

The Brainstem Disability Index symptoms are those of cervical medullary syndrome — a syndrome caused by brain compression.

One thing I am curious about: these 20 symptoms of the Brainstem Disability Index, did you have some of these symptoms even before you first developed ME/CFS, or did these symptoms only start to manifest once you were hit with ME/CFS? Because I am wondering if you may have had some cervical medullary syndrome going on even before ME/CFS appeared.

By the way, did you all develop ME/CFS after an infection (flu-like illness, gastrointestinal illness, etc)? Or did you have other triggers of ME/CFS?

Out of those 20 symptoms I had only had IBS before ME.

I’ve had lifelong issues with stamina/energy but it wasn’t until 2012 that I got really ill.

There was no particular illness or infection that set it off

 

[MEPatient345]

I did not have any symptoms before getting ill.

By the way, did you all develop ME/CFS after an infection (flu-like illness, gastrointestinal illness, etc)? Or did you have other triggers of ME/CFS?

I had multiple triggers in the 7 months preceding my illness.. bad flu 7 months before getting ME, bad virus 4 months before, taking up road biking all at same time. I did 3 long rides the 3 weeks before developing full blown ME. Each week was having worse symptoms. I think that holding neck in extension for three hours at a time was the last straw, and aggravated a condition that was already there.

 

[bombsh3ll]

@Hip prior to illness I had only the GI symptoms (reflux and constipation) since childhood, totally manageable with medication, lifelong insomnia with frequent awakenings but NOT sleep apnoea, and occasional raynaud's in hands.

The only symptoms I could add to the above list since illness onset are "dizziness" (however because of my medical background I never use that term, as it does not differentiate vertigo, which I do not have, from presyncope which I have constantly, to the point I am recliner bound and can only stand a minute or so with difficulty), and memory loss.

I tested positive for POTS on tilt and stand tests, however my BP goes up when standing, it does not drop.

The questionnaire I filled in from Dr Gilete also had some more items on it such as headaches (onset with illness) and polyuria (lifelong).

Perhaps I should add that I seem to be unique in that my onset was provoked by a very forceful Valsalva. It was immediate. Prior to that I had regarded myself as completely healthy. I am not aware of having any viral symptoms around that time whatsoever.

B xxx

 

[Waverunner]

I've been following this forum and the CFS community for over 15 years or so.

I was away for the last several years since I somewhat gave up on research and tried to cope with everything as good as possible. Nothing helped.

Now the crazy part: I had an upright MRI of the upper cervical spine two weeks ago. This was completely unrelated to any news or threads here, since I didn't visit the forum for the last years.

I did it because I have been dizzy since the beginning of this year and got some very unpleasant additional symptoms (pre-syncopes while standing and sitting, bruxism, respiratory problems, dyspnea, anxiety, dull headaches, tingling in hands and feet, strange feeling in the head and neck).

The medical findings following the upright MRI were the following:

• Atlantodental malposition with significant decentered Dens axis
• Significant malpositioning of the Dens axis following head rotation
• Indicated atlantodental instability
• Associated irritation of the adjacent paradental space
• Scarred structural changes of the Ligamenta alaria
• Reduced subarachnoid buffer zone
• Indicated functional myelon contact associated with head rotation

I have an appointment with a specialist in three weeks but right now I'm helpless and a little scared.

I get a normal MRI for the whole cervical spine in two weeks and following the speciliast visit, I would like to get an angiography as well.

Wouldn't it be crazy if a subgroup of CFS cases is caused by changes in the cervical spine and the atlanto-axial joint?

I got goosebumps when I read Jeff's story:

https://www.healthrising.org/blog/2...fibromyalgia-pots-craniocervical-instability/

 

[Hip]

@Waverunner, if your upright MRI involved images taken in the head flexion (chin down) and extension (chin up) positions, you can consider sending a CD of your MRI to Dr Gilete in Spain, who for €250 will tell you if you have CCI, AAI or Chiari, providing the reports that you see posted in the last few pages of this thread.

 

[Waverunner]

@Waverunner, if your upright MRI involved images taken in the head flexion (chin down) and extension (chin up) positions, you can consider sending a CD of your MRI to Dr Gilete in Spain, who for €250 will tell you if you have CCI, AAI or Chiari, providing the reports that you see posted in the last few pages of this thread.

Thanks for the info, I'm certainly considering it right now. The MRI images included head flexion and extension.

 

[bombsh3ll]

Thanks for the info, I'm certainly considering it right now. The MRI images included head flexion and extension.

Dr gilete also requires upright in rotation as well as flex extension and neutral. That wasn,t made clear to me at the time I paid & ended up costing me extra. I don,t know if you had those views taken but you might want to if you plan to get a proper evaluation by Dr g. He can,t diagnose aai without the rotational views.

b xxx

 

[Waverunner]

Thanks for the info. My MRI included around 25 minutes of neutral, and then four positional changes: flexion, extension, left rotation, right rotation a 5 minutes, where my head was fixed into position with some roles every time.

However, my fear is that I still need the lower part of the cervical spine. This MRI (head joints) was focused on the Atlas and Den axis and the associated ligaments etc.. The woman at the reception told me that upper and lower cervical spine are treated as two different investigations.

My next MRI covers the whole cervical spine but is not an upright MRI because it is readily covered by my health insurance and upright is not.

 

[bombsh3ll]

At least you've got the craniocervical junction, that is the most important part. Supine may be adequate to examine lower down.

B xxx

 

[Hip]

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.

 

[Malea]

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.

Really helpful to know!




@mattie , I would be very interested, if you would be comfortable with sharing, if in your case it was mainly the translationsl BAI that was abnormal before surgery or the CXA (and maybe Grabbs Oakes), too.

 

[toyfoof]

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.

Ugh. @Hip , thank you, this is really useful information. But ugh, I wonder if this means I should try again with an upright MRI with the various views and send to Dr G. I don’t feel I can properly rule this out if there is a chance the right measurements weren’t looked at.

 

[mattie]

@mattie , I would be very interested, if you would be comfortable with sharing, if in your case it was mainly the translationsl BAI that was abnormal before surgery or the CXA (and maybe Grabbs Oakes), too.

Translational BAI and BDI.
And obvious AAI left and right.
80% score on Brainstem Disability Index

 

[mwmaxwell]

I contacted Dr. B and he told me to try cervical traction and to get the MRI and send in paperwork if I had positive results. I’m a PT so I did home cervical traction and did notice improvement, especially in my POTS symptoms. Sent the 3T MRI and paperwork in. Received and email from his office stating I did not have a pathology falling in the parameters of his office.

Not sure what the next step should be. Should I try another MD? Any guidance would be greatly appreciated.

Brainstem Dsiability Index score 50%

 

[Hip]

Ugh. @Hip , thank you, this is really useful information. But ugh, I wonder if this means I should try again with an upright MRI with the various views and send to Dr G. I don’t feel I can properly rule this out if there is a chance the right measurements weren’t looked at.

I am still trying to understand the significance of all these measurements. If you look on YouTube there is a series of informative video presentations given by Dr Fraser Henderson and Dr Paolo Bolognese, who are good friends incidentally. They both do a good job of explaining these measurements, and the various bone misalignments they quantify that lead to CCI.

Dr Bolognese in this 2018 video at 54:46 says CXA and Grabb-Oakes are more sensitive to horizontal craniocervical instability, whereas the basion-dens interval (BDI) is more sensitive to vertical craniocervical instability.

However, I am not quite clear why Dr Bolognese does not consider the translational measurements that important, whereas Dr Henderson and Dr Gilete do.

Listening to Bolognese, he sounds like he knows his subject well, but I have not found any specific reasons why he usually does not take into account the translational measurements, apart from the reasons listed at the bottom of this post. Dr Bolognese says he does sometimes order upright MRIs with flexion, extension and rotation, but he does not do this generally.

Whereas if you look at this 2017 video (at 1:16) that a CCI patient recorded of her appointment with Dr Gilete, you can actually read the patient's full report on his desk (see image below), and it shows Gilete appears to take into consideration the neutral, flexion and extension positions of all the main measuremts: CXA, Grabb-Oakes, BAI and BDI.

Dr Gilete's report for a patient with CCI and basilar invagination (the vertical component of CCI)

 

[Joly]

Listening to Bolognese, he sounds like he knows his subject well, but I have not found any specific reasons why he usually does not take into account the translational measurements, apart from the reasons listed at the bottom of this post.

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.

 

[Hip]

I would be interested if anyone knows what kind of immobilizing frames are used for the supine MRI

You might find this post on another thread of interest.

 

[Remi]

Dr gilete also requires upright in rotation as well as flex extension and neutral. That wasn,t made clear to me at the time I paid & ended up costing me extra. I don,t know if you had those views taken but you might want to if you plan to get a proper evaluation by Dr g. He can,t diagnose aai without the rotational views.

b xxx

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?

Btw I also read of a pt who did not have issues according to dr G. But I forgot to bookmark it for you.