Questions About CCI and Imaging Report Results!

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Hello everyone. I am new to PR and decided to create an account, mainly due to my interest in CCI/AAI's possible connection with CFS/ME. This is the first time I've really resonated with any of the other connections that have spun around the medical community for the last several decades. I was diagnosed with CFS/ME in 1998 when I was only 18. So, I've tried many different avenues in treating this condition to no avail. I have never been as interested or hopeful that something like CCI could finally be the answer to all of my health issues.

I was fairly stable from the ages of 18-33. However, I just turned 40 and these last several years I have declined significantly to the point of being homebound.

I am so overwhelmed by the plethora of information that I wonder if anyone has a quick thought or suggestion to my question.

I just received the results from my .6 tesla upright cervical spine MRI with flexion and extension. They found central protrusions causing mild central stenosis and cord abutment/trace flattening at C4-C5 and C5-C6 and trace disc bulging at C3-C4 and C6-C7.

My Craniocervical junction: Normal alignment.

Clivo-axial angle: 150° flexion, 155° neutral, 170° extension

Grabb-Oakes measurement: 7 mm flexion, 7 mm neutral, 6 mm extension

Harris measurement: 6 mm flexion, 6 mm neutral, 6 mm extensio

The report state no signs of CM or CCI. I know people have mentioned radiologists will miss signs, etc. My question is, is it still worth sending my images to either Dr. B or Dr. Gilete? Or should I get additional images such as the CT Rotational scan or MRI of the skull or possibly the supine 3T? They did state the the quality of the images were moderately poor. So, I'm also concerned about the quality. My POTS was really acting up during the MRI and I had really bad SOB so I had to keep taking big breaths which obviously caused a lot of movement.

I have limited energy and finacial resources and I don't want to put any additional effort into pursuing another diagnosis if the measurements are going to be the same from one dr. to the next. Unless there is more to this that I'm missing as far as how the diagnosis process works???? My MRI was written specifically notating to rule out CCI and CM. So, I'm assuming the radiologist focuses on those areas when reviewing the report? I don't see my neurologist that ordered the MRI until the end of the month so I would appreciate any input!

Thanks for any input!
 

Malea

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In case there weren‘t any rotational images done with your upright mri, it could make sense to have some done (e.g. rotational ct) to rule out Atlantoaxial instability.
 
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In case there weren‘t any rotational images done with your upright mri, it could make sense to have some done (e.g. rotational ct) to rule out Atlantoaxial instability.
Thank you for your reply! I did not have any rotational viewing done, so I do want to get a rotational CT. Is it safe to say that I don't have CCI based on the findings? Can you have AAI without CCI? I'm also wondering if the cord abutment/trace flattening C4-6 is indicitvie of anything that could be tied into any of my CFS/ME symptoms.
 

Hip

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Is it safe to say that I don't have CCI based on the findings?
If you look at the table in this post, you see that your measurements are not pathological. I am not sure if it is possible to have retroflexed odontoid CCI even with those negative measurements.

Dr B now only takes on new cases if there are positive results from home over-the-door or physiotherapist-applied traction. Did you try neck traction?



Can you have AAI without CCI?
On the summary spreadsheet page of the CCI survey, there is one person with AAI but no CCI. But it's rare in the survey; most with AAI also have CCI. And there is also one person there with retroflexed odontoid, but with other CCI measurements negative.

Please do take the CCI survey, because the survey is desperately short of patients diagnosed negative for CCI, so your answers will be valuable.
 
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If you look at the table in this post, you see that your measurements are not pathological. I am not sure if it is possible to have retroflexed odontoid CCI even with those negative measurements.

Dr B now only takes on new cases if there are positive results from home over-the-door or physiotherapist-applied traction. Did you try neck traction?





On the summary spreadsheet page of the CCI survey, there is one person with AAI but no CCI. But it's rare in the survey; most with AAI also have CCI. And there is also one person there with retroflexed odontoid, but with other CCI measurements negative.

Please do take the CCI survey, because the survey is desperately short of patients diagnosed negative for CCI, so your answers will be valuable.
I appreciate your response. Honestly, a lot of this is over my head. My cognitive function and comprehension has declined greatly in the recent years.... any layman's terms would be much appreciated!
I'm probably just desperately looking for someone to either say that I still need to keep pursuing this diagnosis because of A) the findings on the report B) due to the poor quality of the image the measuresments can't be reliable. or C) the fact of needing additional images to be able to say one way or another. I often here @jeff_w say that often times the radiologist report will say negative even when it's not so I don't know if this applies to my situation or not?



I see myself in each person that has had a diagnosis so far and I want to believe that this is me as well. I have been living with this condition for almost 22 years and this is the closest thing that has even made sense to me and it aligning with my story and journey (very similar to Jennifer Breas story just longer duration)

Although, if need be I can accept the fact that my buck has stopped here and look down the next path.
I will say that Dr. B's office said I can send the images and patient packet prior to doing transaction since I've already had the MRI done. However, I don't want to pay the consultation fee if its obvious that I don't have CCI/AAI/CM or tethered cord.
 

Hip

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I know all too well what it's like pursuing complex subjects when you have brain fog!

It does not look like you have CCI or Chiari, but you might have other issues like AAI, which to detect requires images done in rotational head positions (looking left and right).

And whether your cervical spinal stenosis or disc bulging might be causing your symptoms is probably hard to say without an expert neurosurgeon looking at it.

You might like to join the CCI FB group, that's where most of the discussion is taking place. You can upload your images and report, and get some knowledgable people to comment.
 
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I know all too well what it's like pursuing complex subjects when you have brain fog!

It does not look like you have CCI or Chiari, but you might have other issues like AAI, which to detect requires images done in rotational head positions (looking left and right).

And whether your cervical spinal stenosis or disc bulging might be causing your symptoms is probably hard to say without an expert neurosurgeon looking at it.

You might like to join the CCI FB group, that's where most of the discussion is taking place. You can upload your images and report, and get some knowledgable people to comment.
Thanks for breaking it down :) I appreciate you taking the time to explain this to me! I definitely want to have the CT w/ rotational before I close this door. Once I get clarification on it I will definitely fill out the survey. Do you know the significance of having an MRI of the skull for this diagnosis? Does it matter if it's done upright or supine? Also, do these top surgeon's that Jeff refers to only deal with CCI/AAI/CM or would they be interested in a case like mine? Or would I just need to find a different type of specialist?
And unfortunately I don't have a FB account. I sure do see a lot of people making reference to more discussion being done over there though!
 

Hip

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Do you know the significance of having an MRI of the skull for this diagnosis? Does it matter if it's done upright or supine?
Do mean for diagnosis of AAI? I believe for AAI diagnosis you either need an upright MRI of the cervical spine (not a head MRI) in which you look left and then right to provide the rotational images. Or I think you can also get a CT scan for these rotational images. But I am not that familiar with the scans needed. If you contact Dr G's office, they will tell you which scans are required.

These are the actual imaging instructions that Dr G provides:
Prior to a diagnosis and to follow international standard criteria for assessing Craniocervical Instability (CCI), Atlantoaxial Instability (AAI), and/or subaxial instability, it is necessary to obtain an:

upright MRI with flexion, extension, and rotation.

This type of imaging is superior to a standard supine (horizontal) MRI because it allows us to evaluate instability in a reliable way (from a weight-bearing position).

There are very few upright MRI machines in Europe. Please verify that the machine used is truly upright (not reclined), and that they are capable of doing imaging in full extension/flexion and in rotation (looking to the left and right).

We work with and trust the Medserena Clinic in London. I have attached their self-referral form to this email. If you do obtain a uMRI from another clinic, please also send us a cervical 3D CT in rotation to complete the imaging.


Also, do these top surgeon's that Jeff refers to only deal with CCI/AAI/CM or would they be interested in a case like mine?
I know that Dr G definitely deals with cervical spinal stenosis or disc bulging and offers surgery for these; I imagine Dr B and Dr H would also.

You can set up a FB account in a couple of minutes; that's where you will get better answers to your questions. I don't think I have CCI issues myself, so I have not been through any of these MRI tests, and so I don't know as much as patients who have been through these tests and through surgery, and have direct personal experience. So that's the advantage of joining the FB group.
 
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@Hip : as you State Dr. B only acceptes patients with positive traction results. I guess this means that traction results are more important than MRI measurements in Terms of diagnosis and possible surgery Outcome.

@Pinkratzie7: maybe it is a simple + cheap + effective option to try an over the door traction Device. Idk if There are Any risks but i Read multiple times Dr. B recommends traction as well.
 

Hip

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@Hip : as you State Dr. B only acceptes patients with positive traction results. I guess this means that traction results are more important than MRI measurements in Terms of diagnosis and possible surgery Outcome.
Yes, I think Dr B will only offer surgery if patients' symptoms greatly improve under invasive traction. If there is no response to traction, then surgery will not help, as I understand it.

But note that there is a big difference between invasive traction and over-the-door type traction devices or PT-applied traction. Some patients get no improvements from over-the-door/PT, but see major improvements under invasive traction.

So if you respond to over-the-door/PT traction, then that indicates CCI; but if you don't respond, you could still have CCI.
 
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Do mean for diagnosis of AAI? I believe for AAI diagnosis you either need an upright MRI of the cervical spine (not a head MRI) in which you look left and then right to provide the rotational images. Or I think you can also get a CT scan for these rotational images. But I am not that familiar with the scans needed. If you contact Dr G's office, they will tell you which scans are required.

These are the actual imaging instructions that Dr G provides:






I know that Dr G definitely deals with cervical spinal stenosis or disc bulging and offers surgery for these; I imagine Dr B and Dr H would also.

You can set up a FB account in a couple of minutes; that's where you will get better answers to your questions. I don't think I have CCI issues myself, so I have not been through any of these MRI tests, and so I don't know as much as patients who have been through these tests and through surgery, and have direct personal experience. So that's the advantage of joining the FB group.
I'm just wondering what the significance is of the skull MRI in diagnosing any of these conditions CCI/AAI/CM etc. I believe it's Dr. B that wants an MRI of the skull and I'm just wondering what information they get out of that imaging. They said I can just send the upright image but I want to make sure I'm giving this my best shot and have everything and anything necessary in order to throughly rule and or diagnose. My fear is that I get false negative of CCI/AAI/CM etc and actually do in fact have it and ends up being overlooked from not having the proper images...ugh....lol
That's good to know that Dr. B deals with stenosis and bulging discs in case this is something of significance.

I should have rather said that I don't have a FB anymore. I had one years ago but cancelled it and have quite enjoyed not having an account lol! I am curious about all the information on FB about this topic, who knows I may give in?!?

Thanks again for being so helpful!
 
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@Hip : as you State Dr. B only acceptes patients with positive traction results. I guess this means that traction results are more important than MRI measurements in Terms of diagnosis and possible surgery Outcome.

@Pinkratzie7: maybe it is a simple + cheap + effective option to try an over the door traction Device. Idk if There are Any risks but i Read multiple times Dr. B recommends traction as well.
It honestly makes me uncomfortable doing something such as traction not knowing exactly what's going on. I've heard some people say that traction has made them worse...then what? I'm too severe to take that risk at this point in the game. As I get further into this discovery process I may change my feelings on that. I know more people have mentioned positive then negative but it's something I'm not comfortable with until additional imaging.
 

Hip

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I'm just wondering what the significance is of the skull MRI in diagnosing any of these conditions CCI/AAI/CM etc. I believe it's Dr. B that wants an MRI of the skull and I'm just wondering what information they get out of that imaging.
Dr B asks for a supine (lying down) MRI of the cervical spine (not an MRI of the head) with the head in the neutral position, and Dr G asks for an upright MRI with the head many different positions.

They both use these MRIs to make certain measurements of the bone and ligament positions, and it is these measurements that they use to figure out if you have CCI, AAI or Chiari. If you look at the table in this post, you see the measurements that are taken.

To give you an example, one of the measurements is the clivo-axial angle, which is explained in this post.
 
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Dr B asks for a supine (lying down) MRI of the cervical spine (not an MRI of the head) with the head in the neutral position, and Dr G asks for an upright MRI with the head many different positions.

They both use these MRIs to make certain measurements of the bone and ligament positions, and it is these measurements that they use to figure out if you have CCI, AAI or Chiari. If you look at the table in this post, you see the measurements that are taken.

To give you an example, one of the measurements is the clivo-axial angle, which is explained in this post.
Thank you so much for being so helpful and taking the time to answer my questions! I'm still reading through the threads that you linked! I am beyond impressed with your knowledge and interest in this subject. Especially, considering you say that you don't believe you have CCI. For you to take the time to share your knowledge, while still on the journey to discovering the cause of your symptoms is really such a blessing!