Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Interesting @Hip ! Thanks a lot for this great info!
I ordered Aspen Vista Multipost Therapy Collar Air from E-Bay - this neck collar looks best. Now waiting for it and for home testing what happen.
Because I have morbus scheuermann, it will be good to explore it all!
@Yuno
Yes, as far as I can make out, the translational BAI measurement used by Dr Gilete can detect a type of horizontal CCI (skull sliding horizontally over spine) which Dr Bolognese may not be able to detect.
I believe Dr Bolognese would only be able to measure the translational BAI if he orders an upright MRI with flexion and extension head positions (which he does on occasions, but normally he relies on supine MRI using the neutral head position only).
Conversely, I am not sure whether Dr Gilete uses neck traction tests in his office to measure the dynamic BDI or to test whether symptoms decrease on traction like Dr Bolognese does. This neck traction detects vertical CCI.
So possibly it may be the case that Dr Bolognese is more specialized in detecting vertical instability CCI (provided you go to his office for a test, or you get your PT to perform manual traction on you as Dr B requests in his patient instructions), and Dr Gilete more specialized in horizontal instability CCI. Though that's just my provisional understanding, and I may be wrong, as I am still try to figure it all out.
It should be pointed out that the whole field of CCI measurements is an evolving one. In this Bolognese 2018 video at 29:12 he says that originally there were over 20 different measurements used to detect CCI. Nobody was quite sure which were the best ones to use. Then this later got reduced to 14 measurements.
Finally, especially after the 2013 consensus statement (see page 22) which was arrived at through a large conference in San Fransisco in 2013, it was agreed that the most important measurements for CCI were:
CXA (clivo-axial angle)
Grabb-Oakes
BAI (basion-axial interval)
BDI (basion-dens interval)
Translation BAI
What would it mean for someone like me? I have chronic, severe neck (and right arm) pain from a serious car accident and another injury, and I feel significant, but temporary, improvement from manual traction. But my supine MRI (looked at by Dr. B) showed that I do not have CCI/AAI.
Was it Dr Bolognese who suggested you try manual traction, or is this just something your physical therapist used? If you haven't already, it might be an idea to email Dr B and ask what he makes of your neck pain relief on manual traction, and whether that could indicate vertical instability CCI.
In his patient instructions, Dr B asks patients to report the effects of manual traction performed by a PT.
Although from what I can gather in this post, Dr B may no longer be providing remote diagnoses of CCI to patients who send in MRI scans from afar.
Was it Dr Bolognese who suggested you try manual traction, or is this just something your physical therapist used? If you haven't already, it might be an idea to email Dr B and ask what he makes of your neck pain relief on manual traction, and whether that could indicate vertical instability CCI.
It was actually my own doctor who suggested that I do PT to attempt to build up my overall muscle strength and stamina which was weakened by almost 4 yrs using a wheelchair. I've had significant improvements from treatment and was at the point (around Aug/ Sept 2018) that we felt I was safe/ ready to try PT.
When I was evaluated by the PT, in addition to doing very basic exercises to try to improve my overall muscle strength, she diagnosed me with "cervical radiculopathy" (which my doctor 100% agrees with) and she gave me a few neck exercises to do. In addition, she did gentle neck traction at each session which was very helpful (this was completely unrelated to Dr. B recommending it to his potential CCI patients as a diagnostic tool).
Because my neck pain was so severe, and my prior neck MRI was from 2010, my main doctor ordered a supine MRI of my cervical spine which I did in Dec 2018 (after almost 3-months of PT). The traction was very helpful in the moment but did not lead to any long-term benefits. As I am able to do more physical activity, my neck pain is actually worsening vs. getting better.
My own doctor showed my supine cervical MRI to Dr. B who said that I did not have CCI (which I never suspected that I did and neither did my doctor) but I never had any direct contact with Dr. B. I was just curious what it means that I benefit from manual neck traction and assume that it can help neck pain of various causes?
Last week I had to lift my dog into the car (a total of 4x) for an appt which caused (delayed) neck pain that was excruciating to the point that I was afraid that I had caused a severe injury. My dog is only 15 lbs but this is more than I can lift without severe consequences. I had to lie flat w/ice on my neck for days and part of the delayed reaction involved headache, nausea, and it triggered a POTS reaction that night which had not happened to me in MONTHS.
I literally cannot even remember the last POTS reaction that I had prior to this delayed reaction from lifting my dog into the car. I have "Autoimmune POTS" (which is basically in remission from treatment for autoimmunity) but it made me realize that there is also a structural connection w/POTS in my case. I debated if traction, or a neck brace, or anything else could help. Now that two weeks have past, my neck is back to it's regular baseline. And I will NEVER lift my dog into the car by myself again (it was the first time I had done it since 2014) unless it is a life threatening emergency and I have learned my lesson.
Last week I had to lift my dog into the car (a total of 4x) for an appt which caused (delayed) neck pain that was excruciating to the point that I was afraid that I had caused a severe injury. My dog is only 15 lbs but this is more than I can lift without severe consequences. I had to lie flat w/ice on my neck for days and part of the delayed reaction involved headache, nausea, and it triggered a POTS reaction that night which had not happened to me in MONTHS.
Dr Vicenç Gilete and Dr Fraser Henderson both prefer patients to send in upright MRI or CT scans, which include the head in a full range of positions: neutral (head level), flexion (head looking down), extension (looking up) and rotational (looking left and right).
By contrast, Dr Paolo Bolognese prefers patients to send in standard supine MRI or CT scans, which normally only offer views of the head in the neutral position. Only occasionally does Dr Bolognese also request upright MRI scans with the full range of positions, as an additional test (he says this in his video).
Because of this, depending which of these neurosurgeons you send your scans to, you may receive a positive craniocervical instability (CCI) diagnosis from one, but a negative diagnosis from another. If you are considering fusion surgery for CCI, which is no small consideration, this situation is a little confusing. So I wanted to look into this issue in this thread.
One of the differences between neutral head position supine scans, versus upright scans with the full range of head positions, is that you cannot measure the translational BAI on the supine.
This is because the translational BAI is calculated as the change in BAI value, as the head moves between flexion, neutral and extension positions in the MRI or CT scan.
In CCI diagnosis, there are a number of important measurements of skull and spinal bone positions, and the translational BAI is an important measurement in cases of known ligamentous laxity (people with weak or lax ligaments).
In the CSF Craniocervical Instability Colloquium, San Francisco 2013, a consensus statement was arrived at (page 22 here), in which the experts agreed that the primary measurements used for diagnosing CCI should be:
Clivo-axial angle (CXA)
Grabb-Oakes measurement
Basion-axial interval (BAI)
Translational BAI — used if there is ligamentous instability
The consensus statement says the CXA is ideally measured with the patient in a moderate flexion head position; but if this is not available, then neutral position will suffice in most circumstances.
The table below shows the normal, borderline and pathological ranges for these measurements (data in this table compiled from various sources, including the consensus statement):
Interestingly enough, of the 6 ME/CFS patients diagnosed with CCI who posted their full measurements on this thread, 6 out of 6 had a pathological translational BAI indicating CCI, and 2 out of 6 had a pathological CXA indicating brainstem compression, but all other measurements were normal.
So from this small sample of ME/CFS patients so far, it suggests that a pathological translational BAI is a common issue in ME/CFS. This perhaps suggests that there may be some lax ligament issues in ME/CFS, because the translational BAI and the horizontal instability CCI it represent exists in patients with lax ligaments.
But if Dr Bolognese is not normally taking the translational BAI into consideration, he may diagnose many ME/CFS patients as negative for CCI, whereas presumably Dr Gilete and Dr Henderson may diagnose these patients positive for CCI.
As to who is right and who is wrong, well there may not be a clear distinction.
Dr Bolognese in this 2018 video at 31:19 says that there are over 20 different measurements that apply to the craniocervical junction, and originally nobody was entirely clear on which ones to employ for CCI diagnosis. Then 10 years ago, it was whittled down to 14 measurements, and then more recently reduced to just 2, according to Dr Bolognese: the CXA and Grabb-Oakes.
Though later in the same video at 54:20 Dr Bolognese also talks about the importance of the dynamic BDI for detecting CCI with vertical instability (cranial settling). He says whereas the CXA and Grabb-Oakes are good for detecting horizontal instability, they are not very sensitive for vertical instability, and if the patients major problem is vertical instability, you need the dynamic BDI to detect that.
Dr Bolognese does dynamic BDI testing in his office: applying invasive neck traction to the patient (using up to 35 lbs upward force on the head), and employing a fluoroscopy Xray machine to measure the change in BDI when this force is applied. (But I have not been able to find the pathological range for the dynamic BDI measurement).
If the patient's symptoms greatly improve under traction, it helps establish a cranial settling CCI diagnosis. See this 2018 video at 58:31. I am not sure if the other neurosurgeons use these traction tests in their office.
Dr Bolognese in his patient instructions also asks patients to report the effects of manual neck traction performed by a PT, which is a basic test for vertical instability CCI.
In the 2018 video at 1:06:45 Dr Bolognese say that CT scans can be used to detect rotational instability of the craniocervical joint.
So the main CCI measurements used by Dr Bolognese appear to be the CXA, Grabb-Oakes and dynamic BDI under neck traction.
Dr Bolognese in this 2018 video at 37:02 explains why he prefers supine MRIs. One of the reasons is that upright MRIs are all 1 tesla, and have a lower image resolution than supine 3 tesla MRIs. He says you also get motion artifacts in uprights, because the head is not positioned in an immobilizing frame, and so moves, blurring the image. Furthermore he says flexion and extension are not standardized in terms of head position.
Dr Henderson in this 2018 video at 7:47 says that the consensus meeting in 2013 in San Fransisco, it was concluded that CCI was best detected by the CXA, Grabb-Oakes and the Harris measurement (the Harris usually refers to the BAI, but also to the BDI). In addition, at 11:05 Henderson says it is important to examine the translational Harris (ie, translational BAI).
So the main CCI measurements used by Dr Henderson appear to be the CXA, Grabb-Oakes, BAI, and translational BAI.
And Henderson says that upright MRIs with the full range of head positions are needed.
In this 2012 video at 15:47, Dr Henderson says that it is often important to use an upright MRI, because the weight of the head bears down on the spine differently in an upright, compared to a supine MRI where the patient is lying down. He gives the case of a patient whose neutral head position CXA was 141º (non-pathological) in a supine MRI, yet their neutral CXA was 133º (pathological) in an upright MRI. So without an upright MRI, this pathological neutral CXA would not have been detected.
In this 2018 video at 26:37, Dr Henderson talks about a patient whose cervical spine looked perfectly normal on a supine MRI, but with her head in the extension position it was clear she then manifested cervical spinal stenosis. So in this case, without looking at MRI scans in the extension head position, this spinal stenosis pathology would have been missed.
Dr Gilete seems to use the same measurements as Dr Henderson: in all his reports which forum members here have posted on this thread, you can see that Gilete usually measures the CXA, Grabb-Oakes, BAI, and translational BAI, and that he measures all of these in neutral, flexion and extension head positions.
And if you look at this 2017 video at 1:16 which 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).
Dr Gilete's Report for a Patient With CCI
IN SUMMARY:
The advantages of upright MRI scans are:
The weight of the head bears down on the spine as it does in your normal waking hours. This weight can change the values of the measurements, but you would not detect these values on a supine MRI.
You can have flexion and extension head positions, which allows the neurosurgeon to determine the translational BAI and translational BDI measurements.
Furthermore, with flexion and extension positions, you can check if conditions such as cervical spinal stenosis, which may not have appeared in the neutral head position, might manifest in flexion or extension.
You can have rotational head positions, which allows you to check for atlantoaxial instability.
The advantages of supine MRI scans are:
Supine MRIs are much cheaper, and much more commonplace, whereas places offering upright MRIs are rare.
Upright MRIs are only 1 tesla, but with supine you can have 3 tesla, which provides a higher resolution image, so you get better measurements.
With the head held still in a frame, you do not get motion blurring on a supine MRI, but you may on an upright MRI.
I'm pretty new to all of this, but I'm trying to find into somehow.
Anyway, while doing my research regarding "normal" measurements, I found a quite interesting article about Grabb Oakes aka. pB–C2 line, you might be interested in:
Its about odontoid process inclination and provides ranges of several measurements, including Grabb Oakes/pB-C2. (n = 125) Although all of the participants are referred to cervical spine imaging for some reason, they are considered as pretty normal/ healthy, re. researchs aim. (at least no Chiari)
What I found interesting are the pB-C2-statistics. The mean is at 6.5, what would be concidered as "borderline", following Dr. B, Dr. H ect. Including SD of ± 2.1 it is close to "pathological". So we talk about approx. 15 % (assuming normal distribution) of "healthy" population considered as "pathological".
No idea, whether this helps one of you somehow, but maybe in classifying own measurements.
@HansG, I am not sure I am following your standard deviation argument, but I am a bit dopey today.
And if I remember correctly, normal distributions may not apply to pathological conditions. For example, IQ is considered a normal distribution, but in fact there's an extra small peak on the IQ graph distribution at the very low end of IQ, due to people that have received brain damage from accidents or other causes.
Hi @Hip, hopefully I can properly explain, what I mean. My English is pretty bad.
I'm not very familiar with empirical statistics, so maybe I miss some usual practices or something.
Without any assumption SD is pretty meaningless. It could be many small derivations or a few big derivations. Due to theres no row data provided and at least I found no clue to statistical distribution, I usually assume normal distribution. You're right, it never suits perfect, its just the most likely distribution at lack of background information. Thats why I assume the authors had standard distribution in mind.
But anyway, a SD of ± 2.1 is a mean derivation. Maybe the max of 11 have a big impact, because mean square derivation is sensitive to big derivations, but a significant amount of participants have to be above 8.6 (6.5+2.1). If not 15 %, let it be 10 % pathological. And that is still quite interersting.
We have to keep in mind, that the participants had some reason for getting MRI, e.g. Chiari or spinal cord related symptoms. So maybe some of them indeed had issues, just not from the authors point of view. That would allow a conclusion, that many MRIs look normal for many radiologist. But that is highly speculative.
I just were interested in classifying my own measuremnts, in case of Grabb Oakes 9.4-11.8 (extension to flexion). I'm not sure, If i did the right way, because my basion isn't that apparent, due to 0.6 T upright MRI. After getting my report from Dr. Gilete I will publish the results.
I have EDS. POTS, SEVERE ME/CFS, SFNP, MITOCHONDRIOPATHY
I had an uprightMRI in 2017, the radiologists said that everything was fine, I told them to look for the cci measurements, and they did, everything seemed to be fine back then, then 5 months ago after having neck issues on and off I red Jen and Jeffs story which led me to believe that it was a clever idea to try manual traction (I am bedbound, I have asked a friend to pull my head straight up, stupid as I am). Well, it was a very bad idea as you can imagine. I suffer from severe neck issues ever since.
Looking back at my upright MRI from 2017 I recognized that translational BAI was not mentioned so I looked it up and there was a difference of 3 mm between flexion and extension, that was when I was doing way better over 2 years ago, so right now I am probably way worse off, especially after being completely bedbound for 18 months (I cant stand up) and lying in bad positions and after the head pulling.
What is the translational BAI an indicator of? What kind of neck movement should I try to avoid?
A pathological translational BAI indicates the head sliding horizontally over the top of the spine as you look up or down (rather than pivoting on the spine with next to no horizontal movement). This horizontally movement strains the brainstem and upper spinal cord.
People with this horizontal instability often find that wearing a cervical collar (Philadelphia collar), which restricts your head from looking up or down, can improve symptoms. Such collars can be bought online.
Was your translational BAI measured by a CCI neurosurgeon?
A pathological translational BAI indicates the head sliding horizontally over the top of the spine as you look up or down (rather than pivoting on the spine with next to no horizontal movement). This horizontally movement strains the brainstem and upper spinal cord.
People with this horizontal instability often find that wearing a cervical collar (Philadelphia collar), which restricts your head from looking up or down, can improve symptoms. Such collars can be bought online.
Was your translational BAI measured by a CCI neurosurgeon?
A pathological translational BAI indicates the head sliding horizontally over the top of the spine as you look up or down (rather than pivoting on the spine with next to no horizontal movement). This horizontally movement strains the brainstem and upper spinal cord.
People with this horizontal instability often find that wearing a cervical collar (Philadelphia collar), which restricts your head from looking up or down, can improve symptoms. Such collars can be bought online.
Was your translational BAI measured by a CCI neurosurgeon?
It is so difficult to judge what is life threatening with this, also with every little movement if the head I get burning sensation and pain, again I am completely bedbound, seems hopeless.
Did a professional measure your translational BAI, or did you attempt this measurement yourself?
I saw one case where an ME/CFS patient had worked out their own measurements, but when they sent their MRI scans to a CCI neurosurgeon, the measurements made by a profesional were quite a bit different.
Note also that in recent years, the way CCI measurements are performed by the professionals has changed: previously, they would make the measurements on the bone positions only (called hard measurements), and ignore the soft tissue.
But Dr Paolo Bolognese has helped educate the field that you need to include soft tissue like ligaments in the measurement, because ligaments can swell due to autoimmune attack (this is known as pannus) or swell for other reasons, and the swelling will change the length of the measurements. So this is why soft tissue needs to be considered, and thus the points professionals use to anchor their measurements now include soft tissue.
Dr Bolognese in this 2018 video at 34:18 talks about hard and soft measurements: old school neurosurgeons would only use hard measurements, which do not incorporate the soft tissue ligament. But now the accepted measurement is the soft one.
When you get your report back from Dr Gilete, you can post it on this thread, where lots of people have posted their measurements.
Did a professional measure your translational BAI, or did you attempt this measurement yourself?
I saw one case where an ME/CFS patient had worked out their own measurements, but when they sent their MRI scans to a CCI neurosurgeon, the measurements made by a profesional were quite a bit different.
Note also that in recent years, the way CCI measurements are performed by the professionals has changed: previously, they would make the measurements on the bone positions only (called hard measurements), and ignore the soft tissue.
But Dr Paolo Bolognese has helped educate the field that you need to include soft tissue like ligaments in the measurement, because ligaments can swell due to autoimmune attack (this is known as pannus) or swell for other reasons, and the swelling will change the length of the measurements. So this is why soft tissue needs to be considered, and thus the points professionals use to anchor their measurements now include soft tissue.
Dr Bolognese in this 2018 video at 34:18 talks about hard and soft measurements: old school neurosurgeons would only use hard measurements, which do not incorporate the soft tissue ligament. But now the accepted measurement is the soft one.
When you get your report back from Dr Gilete, you can post it on this thread, where lots of people have posted their measurements.
well, a radiologist did it, and Dr.S who is a cci specialist, but I am afraid he did not really look at it, or well enough - the radiologist did the measurements (very likely without soft tissue integration) and it was negative, but the radiologist did not know anything about translational bai being relevant, so I calculated it from his measurements and it is clearly pathological if the measurements are correct.
Hope this is a clear enough description of the issue!
Lets say you have a pathological translational BAI, can we derive from that which ligaments are likely to be overstretched?
Also, if you take the ligaments into account for the measurements, wouldnt that make it even „worse“, „more pathological“?
also do dr. g and dr. h neasure translational bai in different ways? it seems so? Dr. G measure difference between neutral and flexion and Dr. H between flexion and extension?
but the radiologist did not know anything about translational bai being relevant, so I calculated it from his measurements and it is clearly pathological if the measurements are correct.
OK, that sounds quite straightforward, as the translational BAI is just the maximum change in BAI as the head moves from flexion to neutral to extension. More than 2 mm is considered pathological; and Dr Henderson requires that the translational BAI be more than 4 mm before he considers surgery (see this study).
also do dr. g and dr. h neasure translational bai in different ways? it seems so? Dr. G measure difference between neutral and flexion and Dr. H between flexion and extension?
I am not entirely sure which ligaments might be involved, there may be several; it's possible this info might be found in one of the videos or studies of the main CCI neurosurgeons.
Out of the 6 ME/CFS patients who so far posted their measurement results on the CCI results thread, all had pathological translational BAI (2 out of 6 also had pathological CXA as well). So pathological translational BAI seems to be the main issue in ME/CFS, at least in this small sample of patients.
I am currently working on a detailed questionnaire to collate the measurements of all ME/CFS patients tested for CCI; I hope from that we will be able to see the main trends in pathological measurements.
Yes, it does, especially the Grabb-Oakes, which is a combined measure of how much the dens is tilted back towards the brainstem, plus the thickness of the adjacent ligament to the dens. If the ligament has become thicker, that pushes even more into the brainstem.
Translational BAI, is a horizontal instability though, where it does not really make sense to lift up your head, either mechanically or with hardware?
The pattern that I see from @JenB@jeff_w@mattie seems to be that their issues resolved by pulling up their had, to be honest I believe this could be the biggest prognostic factor for a substantial improvement via surgery.
(unfortunately, in my case pulling made me worde)
In people where you find primarily a horizontal instability I would guess that the surgery would hinder more damage but not help a lot to improve longterm, if you look at the outcomes in EDS patients post surgery of Henderson and Gilette, the results are not very encouraging and VERY FAR away from what happened to Jen and Jeff.
I think the difference is that a vertical instability leads to a compression of tissue which seems to result in less lasting damage, while a horizontal instability results in a stretching injury not very unlike you see in myelopathy and classic spinal cord injury, if you have EDS, this could basically happen to your whole spine, not just your cervical spine, which is why the outcome is not the best, also Dr. Bolognese seems not to keen to do surgery with EDS patients, he is also not looking for translational BAI.
@bread. Hi there! You write about pulling make you worse. What type of traction did you do? Some type of collar or manual pulling/traction?
I try Aspen Vista Multipost collar for week and I feel worse since this DIY testing. More fatigue for sure.
I'm still waiting for MRi this autumn.
Anyone have ideas what's going on, why can collar aggravate symptoms? I am very upset about it! now almost all day in bed, but not sure collar make this worsening...no changes in my treatment for sure!
@StarChild56@jeff_w In light of Jen’s comment & you 2 being the only that I know of on here that have specifically mentioned that Dr B was your surgeon, a quick question: Were you diagnosed with cranial settling/vertical instability by Dr B?
As I understand it you both had more extensive imaging than just the supine MRI that Dr B now requires. Is there need for concern on the part of those who are submitting only this MRI to Dr B for assessment? What do you suggest?
If he accepts your case & does recommend surgery will he then order more extensive imaging?
I believe there is, yes. An upright flexion/extension MRI is more likely to catch CCI than a supine one. False negatives seem to be regularly occurring with supine MRIs, as evidenced by people later getting upright ones that reveal significant problems.
In my own case, my supine MRIs didn't show CCI. My upright flexion/extension MRI showed CCI only in flexion -- not in neutral or extension.
I would suggest getting an upright flexion/extension MRI rather than a supine one. Even though it might not a particular neurosurgeon's preferred imaging, I'd just do it anyway and send him the disc.
@StarChild56 @jeff_w In light of Jen’s comment & you 2 being the only that I know of on here that have specifically mentioned that Dr B was your surgeon, a quick question: Were you diagnosed with cranial settling/vertical instability by Dr B?
I am almost, but not quite embarrassed to say...I *do not remember*. I do know that my specialist pulled up my head in our last visit, the one where I gave him my MRI - the one the day before he was meeting with Dr. B - and it was wonderful and did not want him to let it go. I was dxd with CCI/AAI. 99% certain on the AAI.
As I understand it you both had more extensive imaging than just the supine MRI that Dr B now requires. Is there need for concern on the part of those who are submitting only this MRI to Dr B for assessment? What do you suggest?
Nope, I only had a poor quality .3 T (yes POINT THREE T, not 3T, not 3 TESLA), supine, no contrast - cervical MRI but with flexion and extension.
Now, the day before Invasive Traction and an ICP bolt insertion, and 2 days before CCI surgery - I had to do a bunch of imaging but it was all supine. A full spine MRI (and I am sure it was a 3T vs my puny open MRI that was only .3T). A CT and MRI of the head. And an MRV.
it’s such a relief.
