My MRI images

pattismith

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@sb4
I found information on the clivo-axial angle (also called cranio-vertebral angle).

In this blog, the normal angle is 150-180 degres

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and we have a very informative article by Henderson that says

"There is growing recognition of the kyphotic clivo-axial angle (CXA) as an index of risk of brainstem deformity and craniocervical instability. This review of literature and prospective pilot study is the first to address the potential correlation between correction of the pathological CXA and postoperative clinical outcome. The CXA is a useful sentinel to alert the radiologist and surgeon to the possibility of brainstem deformity or instability. "
...
"All clinical metrics showed statistically significant improvement. Mean CXA was normalized from 135.8° to 163.7°. Correction of abnormal CXA correlated with statistically significant clinical improvement in this cohort of patients. The study supports the thesis that the CXA maybe an important metric for predicting the risk of brainstem and upper spinal cord deformation. Further study is feasible and warranted."
 

pattismith

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@pattismith Yeah Prof Smith puts it at 145.3. He noted it was out of normal range however nothing more.
In fact, reading your measurements, I thought 145 was fine because the consensus says that pathological in under 135. But Henderson seems not to follow this strict rule.
It is strange to notice that your CXA improves in flexion, which is not expected, did you check that?
In this article you can read that some atlanto-occipital horizontal posterior instability resolves in flexion, so I wonder if this could be your case.
edit:
According to traumatology articles, you need a CT multiplanar reconstruction of atlanto occipital joint to access instability inthat joint, I wonder why the EDS-fusion specialists doesn't use it...
 

sb4

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In fact, reading your measurements, I thought 145 was fine because the consensus says that pathological in under 135. But Henderson seems not to follow this strict rule.
It is strange to notice that your CXA improves in flexion, which is not expected, did you check that?
In this article you can read that some atlanto-occipital horizontal posterior instability resolves in flexion, so I wonder if this could be your case.
edit:
According to traumatology articles, you need a CT multiplanar reconstruction of atlanto occipital joint to access instability inthat joint, I wonder why the EDS-fusion specialists doesn't use it...
Yeah, I can sometimes feel better (neck discomfort lessening) in flexion briefly but cant hold it. I figure if I properly sort my posture I will be able to hold my head in the correct position without forward head posture. This will take time though as I think my gastroparesis and thus stomach bloating is pulling the rest of my spine out of position.

I do think the measurement being borderline could be significant combined with the bend that is visible in the spinal cord, but IDK.

Did you get a report with your imaging?
 

pattismith

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Did you get a report with your imaging?
yes, radiologist said everything is fine, and spine surgeon said "why are you coming to me, neurosurgeons are not supposed to deal with painful neck, you should go to a rheumatologist"...
So I told him I saw the last one two years ago for neck pain, he did an xray and said I had arthrosis and that there was nothing to do...
The spine surgeon answered that there might be a lack in the medecine system, because nobody wants to look for neck pain causes...That's it. It took him 5 mn to have a look at my MRI and 10 mn to dictate his report.
I didn't consider talking about my other symptoms, I guessed it was useless...:rolleyes:
He admitted that I have two hernias, but he said "there is room all around the cord", so it's fine.

My neck is deviated to the left, so he agree that something should be done, and he refered me to see a physio...
 

pattismith

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These pictures are from an article about a patient suffering myelopathy +nuckal pain and posterior atlanto occipital subluxation. (Surgical Treatment for Atlanto-Occipital Subluxation due to Destructive Spondyloarthropathy in a Patient Undergoing Long-Term Hemodialysis)
The surgery they performed is really incredible...
Edit, sorry the content and links are protected, I can't put them here...
Yes I did it

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Are there effective medications for the spine? I have osteochondrosis of the cervical spine, and I am looking for additional help to my spine in addition to exercises and swimming in the pool.
 

sb4

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@pattismith @Hip I have just received my report back from Dr Gillette however nothing really convincing.

He mentions possible AAI but need additional testing to decide, which I am not going to do.

Interestingly he finds for the CXA Neutral 137 (145.3), Flexion 141 (147.2), and extension 150 (154.5). [I have put Smiths measurements in brackets] Yet no mention of it in the report. Even if you use 145+ for normal range that at least puts it in at risk, right?

Well since Gillette has not really given me a Dx and he has a very high rate of doing so I think I will shelve this approach for now. I am not entirely comfortable in doing so as I think my CXA and the bend in spinal cord in brainstem area could be significant. I just wish I could have done full head rotations in the MRI without being blocked by the head guard.
 

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Hip

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Interestingly he finds for the CXA Neutral 137 (145.3), Flexion 141 (147.2), and extension 150 (154.5).
If you look at the reference ranges for CCI, then a pathological CXA is 135º or less, so your CXA of 137º is pretty close to that pathological threshold.

Strange how your CXA then becomes slightly higher (141º) in flexion (head looking down); I am no expert, but I would have thought that the CXA would normally be smaller in flexion compared to its value in neutral.

Maybe that's part of the reason why Dr G did not diagnose or mention CCI in your case.



By the way, since your CXA is in the normal range during extension (head looking up), I've always wondered whether people with CXA issues might benefit from spending several hours a day in extension. (This only applies to cases like yours where the CXA is in or near the normal range in extension).

Obviously you cannot spend the whole day looking up at the ceiling, but what you can do, for example, is when you are using a computer, use a laptop or tablet while you lay horizontally on the bed on your stomach downwards. That way, you will naturally have your head in extension while you are working on the laptop or tablet.

Similarly if you are reading a book, you can lie down, stomach downwards, on a bed or a sofa, and again your head will be in extension when reading. And when watching TV, you can lie on the floor (with some cushions if necessary), and tilt your head up to watch TV, so that you are in extension.

If you did this for several hours a day every time you are using a computer or watching TV, it may allow normal functioning of your nerves and autonomic nervous system during that period, which possibly may then improve ME/CFS symptoms. When people have had CCI fusion surgery, sometimes their ME/CFS has cleared up within weeks; so I wonder if you might see improvements in your symptoms within weeks if you tried such an experiment?

Whether there might be any risks involved in such an experiment, I am not sure.



Dr G has diagnosed you with sub-axial instability, with the C4/C5 and C5/C6 disks in your neck bulging and thus impinging on the spine. Did he say anything about offering surgery for this?

Do you have an image of your cervical MRI uploaded anywhere? I'd like to see those disk bulges.

Depending on whether those bulges are on the front or the rear of the spine, perhaps looking upwards may make them worse or better.
 
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sb4

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@Hip He hasn't diagnosed me with AAI he said it is possible but I would definitely need more imaging.

It's strange how there is such a discrepancy between smith and gillettes neutral CXA reading (137 vs 145.3). Perhaps G is doing soft tissue measurements? Perhaps this is why he dx far more people than S. For what its worth, my amatuer attempts at measuring CXA came closer to Smiths.

I have more images spread throughout this thread but message me if you want to see any and I will upload it. As you can see in the image above, when in extension the canal diameter shrinks to 8mm on certain saggital slides. I understand pathological is below 10, so indeed this does make the buldging worse. Furthermore, my head actually extends quite far beyond normal range. It is something like normal range is less than 35 and mine is in the 70s.

Incidentally I for a short while about a year or so ago would have to laydown at late evening / night as my neck and back would be too achy/painful to comfortably sit up right. (This generally only comes on at night). So I would stop doing my computer work and lay down usually with a screen hovering above my face on some contraption, where I would then play a video game or watch some videos.

Anyway these contraptions are awkward so I was forever changing things around and for a short while I had it set up so that I would lay on my back, propped up on some pillows and let my head hang backwards (extension) whilst watching TV with the screen flipped 180 degrees. I only did this for a few days as it was uncomfortable and I did not notice any improvement then. Infact my neck feels quite uncomfortable in this position.
 

Hip

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@Hip He hasn't diagnosed me with AAI he said it is possible but I would definitely need more imaging.
Has not diagnosed atlantoaxial instability (instability between C1 and C2), but as far as I can see, he seems to have diagnosed sub-axial instability (instability lower down than C2).

It's usually towards the bottom of Dr G's reports that he places the summary of his diagnoses, something like this example:
Screenshot 2019-11-04 at 7.08.52 pm.png



It's strange how there is such a discrepancy between smith and gillettes neutral CXA reading (137 vs 145.3). Perhaps G is doing soft tissue measurements? Perhaps this is why he dx far more people than S. For what its worth, my amatuer attempts at measuring CXA came closer to Smiths.
Yes, that is quite a discrepancy. I am not quite sure if hard and soft measurements come into the CXA measurement. I know there is a difference between hard and soft for the Grabb-Oakes measurement though.
 

sb4

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@Hip It appears you have mistaken somebody elses report for mine. On mine the Diagnoses section simply says Possible AAI need more diagnostics, or something to that effects.

Perhaps I am thinking of the wrong thing but I seem to remember the CXA with soft tissue being something like, the first line starts at the back of the bottom of the odontiod (or is it dens) and then instead of following the bone up, it follows the ligament up if you know what I mean.

Something a bit like this : 1.png
 

Hip

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@Hip It appears you have mistaken somebody elses report for mine.
Yes, that's someone else's report from Dr G. I just gave it as an example. Usually Dr G details his findings and diagnoses in the body of report, then provides this summary section (like my example) of his various diagnoses at the bottom of the report.
 

Hip

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Funny how Dr G has not written in your diagnosis summary section that you have subaxial instability, given that he wrote it in the body of your report.
 

sb4

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@Hip I don't think he does say that in the report:

"Cervical Subaxial
C4-C5 & C5-C6 cervical discs: disc protusions and bulging
Cervical cinerradiology will be recommended to finally assess subaxial instability."

It just says that he recommends cinerradiology to asses it.
 

Hip

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Sure, Dr G recommends cineradiography to confirm his suspicions of a possible sub-axial instability in your case.

But in the example Dr G report from another ME/CFS patient that I quoted above, in the body of the report, Dr G said this:

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That's quite similar to what it says in your report. And then in the conclusion, it states the bit I quoted above, which I include again here:

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So in this example report, it mentions sub-axial instability in the body of the report, and then repeats this diagnosis (subject to confirmation by cineradiography) in the diagnosis summary section.

Whereas in your report, it mentions sub-axial instability in the body of the report, but not in the diagnosis summary section.

That's what I thought was strange.
 
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@sb4 Maybe you want to get that CT scan done depending on how easy it is for you.

I got both CT and MRI done at the same time before sending the imaging to Dr. Gilete. The CT takes a much much shorter time than the MRI. I think my CT with both rotational views was done in less than 3-4 minutes.