Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[Mânca]

Hi everyone,
My sister received her report from Dr Gilete - CCI , AAI and subaxial instability C4-C5. He recommended surgery.
Before taking any decision I really feel that I have to have another opinion. We are from Europe. Any advice to contact the other doctors Bolognese and Henderson ? Is there a long waiting list? How long it would take to have an answer from them? Any of them agrees with video conferences because is impossible for us to travel to USA?

Thank you. I am grateful for any info.

 

[Hip]

@Mânca, there are certain types of CCI that Dr G appears better at detecting, and there may be certain types which Dr B is better. Dr B may be more conservative in the patients he offers surgery to. If you post your sister's anonymized report from Dr G on this thread (many people have posted their reports there), others can take a look at it.

 

[Mânca]

@Hip thanks for the tip
I've attached the pictures. Any advice or idea is more then welcome.

 

[Hip]

@Mânca, it's the measurements such as the clivo-axial angle (CXA), Grabb-Oakes, BAI, etc from Dr Gilete's report that people are posting.

 

[Mânca]

@Hip Sorry for misunderstanding. I will write down her measurements :
The tip of the odontoid peg lies at the level of Chamberlain's line.
Cerebellar tonsils ectopia: 4,4 mm.

 

[bread.]

I did not have brainstem compression.

I hope it is ok to say that, this NEATLY fits my theory that a vertical instability and brainstem compression could be a major criteria for a good to very good surgery outcome.

Or am I mistaken and you suffered from vertical instability also? What measurements were off?

I think it would be fair to say that I do not want my theory to be correct, for you and also for myself.

According to the criteria you posted I am a very severe patient for 2 years, my feet have not touched the floor in this time. I have MCAD, POTS. EDS, mitochondriopathy (?!) and CCI too, I did not get better with traction it made me WORSE chronically, the traction was 6 months ago in my case (done by a friend, she pulled very carefully, but damage was done) never reached baseline after this stupid incident - patients like myself who are desperate have to be aware of this.

Traction DEFINITELY can make instabilitys worse, it does NOT matter who does it, of course a professional is the only one who should do it, but even then people with EDS and ME should be very careful in deciding whom to let touch their necks.

I feel it is not a very good idea to tell people to do traction „to see what happens“ like some CCI doctors and patients promote. The average PT and or doctor has no experience with that stuff.


I am not aware that anyone with my severity had fusion, your post helps me to guide my further decisions.


EDIT: just saw you mentioned measurements already!

—->

again, this makes the theory somewhat stronger, time will tell. the thing is that it will save you from further damage, that is for sure.

 

[Julia_S]

Traction DEFINITELY can make instabilitys worse, it does NOT matter who does it, of course a professional is the only one who should do it, but even then people with EDS and ME should be very careful in deciding whom to let touch their necks.

Agree 100% !

 

[Hip]

If you look at the normal and pathological ranges in the table in this post, it looks like the translational BAI of 4.8 mm is pathological. This corresponds to a horizontal instability.

CXA is pathological if it is 135º or lower. Your sister's CXA is 138º in the neutral head position, which is borderline but not pathological, and 135º in the flexion position (I do not know if this flexion position counts as pathological).

Then there is an AAI pathology.

You can send you MRI images to Dr Bolognese, but I don't think Dr B examines the translational BAI, so it is possible you may get a negative diagnosis from Dr B (he may not give a negative diagnosis, but may just tell you that "your condition does not meet our office parameters for CCI"). However, Dr B does not charge for examining MRI images.

Mattie was diagnosed with horizontal instability CCI, and 6 months after his fusion surgery with Dr G, Mattie moved from severe ME/CFS to moderate ME/CFS (on the ME/CFS scale of: very severe, severe, moderate, mild, remission), which is an improvement, but he is not yet in remission (see Mattie's latest post here).

 

[Mânca]

@Hip I've sent her MRI to Dr B and he responded extremely quick- few hours apart (a total surprise for me) and he said he saw her MRI and she is approved for an appointment (video). But she has to try traction also. I don't know what his opinion is yet but I think if there wouldn't be anything suggestive for surgery he would have refused us.

 

[Hip]

@Hip I've sent her MRI to Dr B and he responded extremely quick- few hours apart (a total surprise for me) and he said he saw her MRI and she is approved for an appointment (video). But she has to try traction also. I don't know what his opinion is yet but I think if there wouldn't be anything suggestive for surgery he would have refused us.

Well that is interesting, because for some patients, Dr G gave a positive diagnosis, but Dr B gave a negative diagnosis (or a statement of "your condition does not meet our office parameters for CCI").

 

[HansG]

I did not have brainstem compression.
I had translational BAI and BDI which can stretch / stress the spinal cord and cause problems.
Also AAI left and right.
Compression of brainstem was not seen in my scans.

I hope it is ok to say that, this NEATLY fits my theory that a vertical instability and brainstem compression could be a major criteria for a good to very good surgery outcome.

Or am I mistaken and you suffered from vertical instability also? What measurements were off?

[...]

EDIT: just saw you mentioned measurements already!

—->

again, this makes the theory somewhat stronger, time will tell. the thing is that it will save you from further damage, that is for sure.

@bread. Doesnt BDI indicate vertical instability? I guess, considering https://me-pedia.org/wiki/Craniocervical_instability#Measurements .

 

[HansG]

@bread. And are you assuming that brainsteam compression only occure in horizontal stability or did I got you wrong in this?

 

[mattie]

@bread. Doesnt BDI indicate vertical instability? I guess, considering https://me-pedia.org/wiki/Craniocervical_instability#Mea

yes. but not brainstem compression.

 

[Hip]

Doesnt BDI indicate vertical instability? I guess, considering https://me-pedia.org/wiki/Craniocervical_instability#Measurements .

There is a difference between:
BDI
Translational BDI
Dynamic BDI

BDI = distance in millimeters between the basion and dens.

Translational BDI = the maximum change in the BDI value as the head moves from flexion to neutral to extension.

Dynamic BDI (which is performed by Dr Bolognese in his office) = the change in BDI when an upward force is applied to the head via invasive neck traction.

 

[MEPatient345]

Hi @mattie... welll.. Eugh I am bummed out for you, and this is something of a reality check for all of us starry eyed with hope about surgery getting us to 100%. I know that of course you wanted more improvement. I’m glad for the gains you have so far, but I do hope they keep improving this year.. hugs!!

 

[bread.]

my whole „theory“ stands on the idea that people will have greater results post surgery if there is brainstem compression which seems somewhat more likely in more pronounced vertical instability, this seems to be a different kind of injury to the nerve tissue than a stretch injury, which seems more likely (or solely happening?) in horizontal instability.

If you look at classic spinal cord accidents it is mostly a stretch injury (or tear in worst case) which results in mostly irreversible (?) damage- also due to the massive inflammatory cascade which ensues thereafter. So maybe that is similar?

Everybody has to understand that I am a baker, not a doctor or scientist, I constructed this „theory“ from a very limited data set and years of reading personal anectodal accounts of patients. I basically have no idea what I am talking about and looking back reading posts here while getting sicker and sicker with trying things I wish that I have known that nobody else does either.


Matties description of his improvement fits the available data more than the „miracle“ patients, I have zero doubt that they are real but we have to understand why they got so much better before assuming that everyone (or even the biggest part of patients) will have these incredible results!

 

[HansG]

There is a difference between:
BDI
Translational BDI
Dynamic BDI

BDI = distance in millimeters between the basion and dens.

Translational BDI = the maximum change in the BDI value as the head moves from flexion to neutral to extension.

Dynamic BDI (which is performed by Dr Bolognese in his office) = the change in BDI when an upward force is applied to the head via invasive neck traction.

@Hip Thank you for specifying. But it is always about vertical insatbility, isn't it?

 

[Hip]

But it is always about vertical insatbility, isn't it?

The dynamic BDI measures vertical instability, but I am not clear on what the BDI and translational BDI measures, as I have not been able to get any info on this.

Often measurements will detect both vertical and horizontal instability to some degree. The CXA and Grabb-Oakes for example are both more sensitive for horizontal instability, but they will detect vertical instability too.

 

[borko2100]

my whole „theory“ stands on the idea that people will have greater results post surgery if there is brainstem compression which seems somewhat more likely in more pronounced vertical instability, this seems to be a different kind of injury to the nerve tissue than a stretch injury, which seems more likely (or solely happening?) in horizontal instability.

I do not know much about horizontal instability and how it can cause pathology. When it comes to vertical instability on the other hand, there is plenty of data in the scientific literature. The problems below are actually quite common and occur often in cases of chiari, arthritis, congential problems, etc.

There are 2 main possibilities.

a. direct compression of the brainstem by the dens of the axis (C2).

The red piece of bone (dens) should never cross the red line. Above the red line is where the brain starts (foramen magnum). If this occurs the brainstem gets compressed. This is called basilar invagination or cranial settling.

b. stretching of the brainstem and spinal cord beyond its natural limits

It is not very obvious here, but the spinal cord on the right is longer than the left. The spinal cord and brainstem cannot function properly if they are stretched beyond their normal length. This stretching is what causes the pathology.

Now it should become obvious why traction helps with those cases. In case a: when the head is pulled upward, the dens is pulled away from the foramen magnum thus eliminating the compresion. In case b: the traction causes the curvature of the spinal cord to be normalized and thus removes the pathological stretching.

So if the diagnosis is case A or B, the probability ofsuccess from fusion surgery is very high. If on the other hand the problem is horizontal instability then the picture isnt as clear. If someone knows more about how horizontal instability actually causes compression or stretching please let me know.

Note that these conditions are not always referred to as craniocervical instability in the scientific literature. That's why googling CCI often leads to few results. This makes sense, since these conditions can occur even if there is no instability in the ligaments.

 

[rel8ted]

Hi @mattie... welll.. Eugh I am bummed out for you, and this is something of a reality check for all of us starry eyed with hope about surgery getting us to 100%. I know that of course you wanted more improvement. I’m glad for the gains you have so far, but I do hope they keep improving this year.. hugs!!

I cannot remember which of his talks it was, but I recall Henderson saying in an anonymous survey, about half of patients said they felt they had made remarkable recovery, 25% said they were better to a lesser degree and 25% felt they were worse off or no improvement. He indicated some of those might have had other unresolved issues.