CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions (please answer whether tested positive or negative)

[Hip]

I think what I wanna say is I am a bit unhappy about the classification and wouldn't know where to put my headaches; only it's not "tension headache".

I am not happy with this survey question either, because I think the headache classification may be a bit overkill, and I've realized that the detailed answers to this headache question probably do not tell us anything useful.

If you look at the survey results, many of the respondents say that they experience 3 to 5 of these headache types. So I don't think these detailed results really tell us anything really.

I was hoping that people with CCI etc would only experience very specific types of headache, for example, only coat-hanger headaches or occipital headaches. In which case, the type of headache a person has provides a clue as to their CCI status.

That was the purpose of this headache question: to see if there was a relationship between the type of headache experienced, and whether someone is positive or negative for CCI or related conditions. But there does not seem to be any such relationship.

Therefore it might have been better and simpler just to ask: "Do you have headaches, and if so, are they mild, moderate or severe?".

Or where do I put migraines that involve both sides? I know it is said that migraines are typically on one side, but in my case they never were.

In the survey it explains that normally migraines involve one side only (but migraines can sometimes involve both sides). So if you have migraines involving both sides, that still goes under migraine.

where do you put concussion-headache

Isn't concussion headache just something you experience for a few days or weeks after you have had concussion? I don't think any of the survey respondents will have had concussion recently.

 

[Hip]

I assume that the higher BDI is under invasive traction, the bigger is the ligament laxity and the craniocervical hypermobility. This means you were highly likely to respond to fusion.

Yes, Dr Bolognese calls the dynamic BDI measurement, which is performed using invasive traction, a "dress rehearsal for surgery". I believe he tests all his patients using invasive traction prior to surgery, to ensure that surgery is going improve symptoms.

 

[ScottTriGuy]

Therefore it might have been better and simpler just to ask: "Do you have headaches, and if so, are they mild, moderate or severe?".

I don't get what I would call headaches (other than 1 a couple of months ago, but it was what I would call my first migraine: I needed darkness and silence for about 8 hours and it felt like my head was going to explode).

But I do get a lot of pressure at the base of my skull - the worse I feel, the more it hurts (but doesn't hurt like I think of the occasional headache I've had in the past).

So I probably wouldn't answer 'yes' if asked if I had headaches as part of my ME. I would answer 'yes' if asked if I had pressure at the base of my skull (that gets worse if I bend over).

Fwiw, initial viewing of my MRI shows an acute clivoaxial angle in flexion.

 

[Hip]

But I do get a lot of pressure at the base of my skull - the worse I feel, the more it hurts (but doesn't hurt like I think of the occasional headache I've had in the past).

So I probably wouldn't answer 'yes' if asked if I had headaches as part of my ME. I would answer 'yes' if asked if I had pressure at the base of my skull (that gets worse if I bend over).

Although cervical medullary syndrome (CMS) symptoms include headache and neck pain, I've never seen any indications that pressure at the base of my skull is considered an CMS symptom. I scoured a number of different sources listing CMS symptoms, and the 32 CMS symptoms I included in the survey (7 of which also being ME/CFS symptoms) come from these various sources. But I did not see this pressure at the base of skull symptom.

It might be interesting to ask CCI positive patients whether they have this pressure at the base of their skull.

Interestingly, in the survey, most people (85%) who are positive for CCI, AAI, Chiari or cervical spinal stenosis have in the range of 12 to 28 CMS symptoms. The other 15% of the positives have in the range of 5 to 11 CMS symptoms.

Unfortunately very few people who are negative for CCI and related conditions have answered the survey (only 3 negative people at the moment), but these negatives had in the range of 4 to 14 CMS symptoms. But so far at least, the number of CMS symptoms does seem to be an indicator of CCI status.

 

[Inara]

Isn't concussion headache just something you experience for a few days or weeks after you have had concussion?

Yes, but I have daily headaches that remind me of concussion headaches.

I needed darkness and silence for about 8 hours and it felt like my head was going to explode

Yep, in the entire head, not just one side, right? It's pretty terrible.

 

[ScottTriGuy]

Yep, in the entire head, not just one side, right? It's pretty terrible.

Yes, my whole head, but especially at the base of my skull. I assume it was a migraine, but...

 

[Florianne]

Hello @ScottTriGuy , the head pain you're talking about is at the neck (back base head and neck and we could talk the brainstem). If so, it's my biggest pain that gives me headaches of tension and other pain.

 

[StarChild56]

You made the right choice!

Thank you

You got it right again!

Wow, thanks!

Thanks very much for answering the CCI survey, StarChild56. I know it is a difficult in places, does take a little while to complete. But I hope the survey will provide useful information to all ME/CFS patients looking into CCI and related conditions.

I want to help out, and thank you for creating it, maintaining it and helping whenever someone needs help. It is really important.

 

[StarChild56]

@Hip
in the starchild MRI with Dr B measurement of the Grabb Oaks, we can see that the black line around the bones is considered as part of the bone when he draws the line.
We can see that the posterior arch of the atlas makes a slight protrusion into the spine canal which may be an atlas subluxation sign.
It's important to note that even with subnormal measurement and not any noticeable brainstem compression in neutral position, starchild had AAI symptoms that resolved after fusion.

Thank you for pointing this out. I barely understood it but some things are starting to sink in.

I did get confirmation from Dr. B that I had AAI. I was 99% sure before, but wanted him to confirm just in case I was wrong.

 

[StarChild56]

I assume that the higher BDI is under invasive traction, the bigger is the ligament laxity and the craniocervical hypermobility. This means you were highly likely to respond to fusion.
I don't know if Jen had BDI measurement under invasive traction, @Hip , do you know?

Thank you for the explanation! Slowly tiny pieces are falling together to help me understand better

 

[StarChild56]

Yes, Dr Bolognese calls the dynamic BDI measurement, which is performed using invasive traction, a "dress rehearsal for surgery". I believe he tests all his patients using invasive traction prior to surgery, to ensure that surgery is going improve symptoms.

Further help with your explanation (for me to understand), thank you.

Dr. B told me in no uncertain terms that ICT is the last test and that if you do not have a positive result - no matter how severe or pathological your measurements are - you will not have surgery.

My surgery was scheduled the morning after my ICT. It would have been canceled if my response was not positive.

Btw...my ICT - it was WONDERFUL. I felt so good...and the hardest thing to describe is not only did it help with bad pain and pressure issues. It also did something, fixed something I wasn't even aware of as being a bad feeling, it was normal to me. I haven't yet returned to that wonderful level yet (close to it 2nd morning post op before all my horrific swelling happened) because I am still healing and still have swelling.

My specialist said that my skull was lifted several millimeters (and of course screwed in to keep it there lol). Which sounds so insignificant to have such incredible improvements.

 

[pattismith]

. I felt so good...and the hardest thing to describe is not only did it help with bad pain and pressure issues. It also did something, fixed something I wasn't even aware of as being a bad feeling, it was normal to me. I haven't yet returned to that wonderful level yet (close to it 2nd morning post op before all my horrific swelling happened) because I am still healing and still have swelling.

Now that you experimented the normal feeling when your head was lifted, are you able to explain the wrong feeling you were experimenting before the lift (and that is still not gone because of the healing process)?

 

[pattismith]

Yes, the 6.75 mm line in your MRI is the Grabb-Oakes measurement, and between 6 mm to < 9 mm is considered borderline. So your Grabb-Oakes is borderline.

.

Am I wrong or you didn't mention this in the consensus thread?
(I am border line, and so is @sb4)

I would be very interested to know the craniometry of patients who improve after fusion...

 

[StarChild56]

Now that you experimented the normal feeling when your head was lifted, are you able to explain the wrong feeling you were experimenting before the lift (and that is still not gone because of the healing process)?

I still do not feel like I have the words. The closest upon reflection would be like the absence of being squashed at all times. From the top of the head but it actually affects the whole body even if slight. Like, I knew the feeling of my skull grinding into my neck, especially painful where the neck meets bottom of skull. I knew it worsened all the pain in my neck & my left side is worse (and it would go into my shoulder, arm on left side too). But this was very apparent.

The unsquashed feeling was on top of the relief of the grinding pressure pain from my boulder - skull into my neck.

Sorry that is the best I've been able to come up with. I didn't know before that I felt squashed globally, until it was gone. And my head had NO WEIGHT.

And you are right I am still healing and have not returned to that fantastic feeling yet inching (or milimetering) closer

 

[StarChild56]

@Hip - this may be silly or not even answerable. I only have 8 images from my NS, and only 2 from the MRI that he diagnosed me from (awkward wording sorry). I don't believe he sent me the flexion or extension ones. But in any case, this is where I saw his measurements I discuss here.

Do you have any idea why on the 2 images from the same MRI he noted slightly different numbers (the CXA, the Grabbe-Oakes are slightly different - and there is another line on the second image (which is more zoomed in, but believe both are in neutral), another vertical line, but in a different color and measuring a different area - yet also labeled "length" like the other 2 Grabbe-Oakes are also labeled "length" but in blue, as opposed to green and in different areas. Argh if this make no sense just please forgive me. I really am very bad at all of this. Which is in part why it took me so long to even do the survey because I just could not cement the terms in my head no matter how much I tried to read about them.

The other reason was I was not certain (though 99% certain) if I had both CCI and AAI.

 

[StarChild56]

Another question that may not have any answer.
Do we know what the average CXA, Grabbe-Oakes & the other ones (sorry I get confused with BAI, BDI) are for the general population?

 

[Hip]

Do you have any idea why on the 2 images from the same MRI he noted slightly different numbers (the CXA, the Grabbe-Oakes are slightly different

I don't really know, but my guess is that you would naturally get slight variations in these measurements in different MRI images for the same person. This is because you have to use human judgement to find the exact anchor points where you draw your lines.

Dr Bolognese pointed in one of his videos that if you send even the same MRI image to different neurosurgeons, they each will return a slightly different measurement, because it comes down to human judgement.

Do we know what the average CXA, Grabbe-Oakes & the other ones (sorry I get confused with BAI, BDI) are for the general population?

Yes we do: if you look at the table in this post, you see the measurement range that is considered normal in a green color (this will be the range that normal healthy people fall into).

So for example for CXA, the normal range is 160 to 145. Then the ranges which are considered pathological is also given in the table. For CXA, anything less than or equal to 135 is pathological (the ≤ sign in the table means "less than or equal to").

 

[StarChild56]

I don't really know, but my guess is that you would naturally get slight variations in these measurements in different MRI images for the same person. This is because you have to use human judgement to find the exact anchor points where you draw your lines.

Dr Bolognese pointed in one of his videos that if you send even the same MRI image to different neurosurgeons, they each will return a slightly different measurement, because it comes down to human judgement.





Yes we do: if you look at the table in this post, you see the measurement range that is considered normal in a green color (this will be the range that normal healthy people fall into).

So for example for CXA, the normal range is 160 to 145. Then the ranges which are considered pathological is also given in the table. For CXA, anything less than or equal to 135 is pathological (the ≤ sign in the table means "less than or equal to").

Thank you very much

Going to go check it out now. The color differences I generally find helpful (green being in the normal range).

 

[StarChild56]

I don't really know, but my guess is that you would naturally get slight variations in these measurements in different MRI images for the same person. This is because you have to use human judgement to find the exact anchor points where you draw your lines.

Dr Bolognese pointed in one of his videos that if you send even the same MRI image to different neurosurgeons, they each will return a slightly different measurement, because it comes down to human judgement.

Thank you makes sense.

When I went to the post you kindly linked me to about normal, borderline and pathological, the part that talked about *I think BDI but maybe something else, where it is done while doing invasive cervical traction, and indicating vertical instability* - makes a lot of sense for me in how I felt so much relief during ICT not just the most painful/pressed/grinding pain/pressure of my skull into the neck, but a relieve of maybe not feeling wholly squashed down during that ICT.

 

[StarChild56]

I wonder how much one's neck size, particularly neck length - affect the meaning of the number calculated as the Grabbe-Oakes. I am very short and my neck is very, very short. If you were to compare my neck to a very tall person, there would be a huge difference. But even compared to others my height, I have a noticeably short neck.

If my neck is say, 30% shorter than the average person, would that mean my borderline number is actually pathological?

I think I will ask this question at my 6 month surgical follow up.