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

[valentinelynx]

Hi Hip@
No and I will not be tested. I live in Quebec and we do not have that kind of test.

All you need is a standard supine cervical MRI of at least 1.5 Tesla (the usual). I'm sure that exists in Quebec: it is a basic medical test. This is the study that Dr. Bolognese apparently prefers. 3 Tesla is better (higher resolution) but not strictly necessary. If you were able to get a cervical MRI you could send a copy (on disc) to Dr. Bolognese (although he is probably pretty overwhelmed right now).

 

[Florianne]

Hello valentinelynx@, it's very nice of you to think of me. I take note of what you have written. I had 3 MRI but I admit with what you tell me that I do not really understand. So, I write you the results of 3 MRI if it can help you for clarification and tell me if I should have another MRI. I looked in my file and there are 3 MRIs.

First cervical MRI (08-2009). Technique: 5 images centered on the vertical rachis. Results: Cervical spondylosis with decreased C5-C6 intersomatic space and osteophytosis slightly more marked at this level. There is also a loss of lordosis or even an inversion of lordosis at this level. Absence of suspicious bone lesions. No fracture.

2nd spinal MRI (01.2010) information on request: headache, paresthesia of the upper limbs. eliminate herniated disc. And the results are: "Hyperintensity wave T2 and Flair, simple, cortical juxta, posterior right parietal, diameter 6x7 mm without associated anomaly on the diffusion sequences therefore not very specific and which can testify to a small ischemic continuation. There is, therefore, no acute ischemic lesion, no lesions of the corpus callosum, posterior fossa, or upper part of the cervical cord, partly studied, and the ventricular compartments remain of normal morphology and size. of mass effect.

3rd MRI in 10-2014: cervical spine (4 inc. Or +) results: rectitude of the cervical spine which is even slightly kyphotic in its lower part Generalized damage c5-c6-c7 with marginal anterior secondary osteophytosis No other significant anomaly. Thank you for your reading and your suggestion, it is very pleasant.

 

[Florianne]

valentinelynx@ I'm going to remove my text if it's inconvenient. I wrote it thinking that someone might tell me if I should ask for another MRI with what I already have.

 

[valentinelynx]

valentinelynx@ I'm going to remove my text if it's inconvenient. I wrote it thinking that someone might tell me if I should ask for another MRI with what I already have.

Your cervical MRIs are probably perfectly adequate for looking for signs of CCI. From what you provide from the reports you have mild degenerative changes to your cervical spine. The radiologist who read them would not have looked for evidence of CCI, that requires a specialist.

Some folks on @JenB's facebook page ME/CFS+ (CCI, Chiari, Spinal Stenosis, CSF leaks, Vascular Stenosis) are engaging in "armchair" (amateur) readings of these MRIs and might give you an idea if you have something worth pursuing—if you have access to the images and can post them. Ideally, however, you should send a copy of the actual MRI (you should be able to get the data downloaded to a CD by the facility that did your MRI) to one of the neurosurgeons on @jeff_w 's Mechanical Basis blog.

However, given how long ago your MRIs were done, it's likely that the facility no longer has that data available, but it's worth asking, just in case. If they no longer have the data to download for you, you would need to get a new MRI of your cervical spine and request a copy of it on disc at the time it is done, or request that they send a copy to the neurosurgeon of your choice.

I hope this is helpful. Best of luck!

P.S. I didn't see your posts at first because in order to tag someone you need to put the @ before the name (e.g. @Gigi100 ) No worries, it took me a long time to figure out how any of this forum stuff works...

 

[Florianne]

Hi @valentinelynx
Another question: you speak of a simple cervical MRI. So, since I have not been able to follow all the conversations here, with your comment, the vertical MRI with extension (the one sitting or standing) ... is no longer necessary?

I went to register on the site of Jen. Thank you. I'm waiting for the response. Thank you for help.

 

[valentinelynx]

Hi @valentinelynx
Another question: you speak of a simple cervical MRI. So, since I have not been able to follow all the conversations here, with your comment, the vertical MRI with extension (the one sitting or standing) ... is no longer necessary?

I went to register on the site of Jen. Thank you. I'm waiting for the response. Thank you for help.

You're welcome. You'll get your response on @JenB 's page soon, I'm sure. It sometimes takes a little time.

The requirements for imaging seem to vary by neurosurgeon. Dr. Bolognese in Long Island is one who prefers a standard supine cervical MRI, ideally 3T but 1.5T is adequate. I can't comment on other neurosurgeons' preferences. See @jeff_w 's Mechanical Basis blog for advice on how to get worked up for CCI. If you find you want to have an upright MRI and none such is available in your area, you could consider traveling to the US to have one. I don't know what the prices are like in the Northeastern US, but in the West I found quotes for about $600 when paying out-of-pocket (no insurance).

 

[Florianne]

Hello @valentinelynx . Thanks again for your answer. I'm going to read where you give me the link for Jeff. There is in Canada, British Columbia, a clinic for vertical MRI in the city of Kamloops. Here is the link: https://www.welcomebackclinic.com/contact-us-today.htm This is very far for me. And I have not checked the cost yet. I search for closer to home if I ever need it (Quebec, Ontario, etc.). If I could here in Montreal have a more precise cervical MRI with specific requests for the radiologist it would be very good. I would have at least advanced in my evaluation. If I understand correctly, it is with Jen, on his facebook site, that I will have details on the choice of MRI (cervical or vertical)?

 

[StarChild56]

@Hip
I just clicked on the link to the survey and read that it is through your Google account.

My Google account is my real first and last name...so while I read that it is anonymous, I would like to know who will have access to these? Because again, my real name. I really try to protect my / my family's privacy (even on FB I do not use my real name, for instance).

I want to help but would like to know more about my privacy concerns.

I also realize nothing on the internet is "safe". But that is why I try to have one level of protection.

I signed up for my Google account a long time ago and why I did not even think about my real name being out there, I can not tell you.

 

[Hip]

My Google account is my real first and last name...so while I read that it is anonymous, I would like to know who will have access to these? Because again, my real name. I really try to protect my / my family's privacy (even on FB I do not use my real name, for instance).

I appreciate your privacy concerns. When I set up this survey, I wanted to ensure that it was absolutely anonymous, so that I could tell people with confidence that it was anonymous, which I think makes people feel more comfortable about answering it.

So I spent some time investigating the degree of anonymity provided by Google Forms, to make sure that personal details were not revealed. It turns out that Google do a good job in keeping survey respondents anonymous — even from me, the survey organizer. Even the survey organizer cannot know your details.

When you set up a Google Forms survey, Google provides summarized results of the survey in graphical form (which you can see here). You can also see the individual answers from each respondent (which you can see in spreadsheet form here, where each horizontal row is a set of answers from one person). All that you see in these two web pages is all that I can see, as the survey organizer. So I do not have any more information than the info shown in those two page.

On those two pages, you can see that Google does not reveal the respondent's name, email, or even their Internet IP address. No identifying info is revealed. The only thing that is marked down is the date and time which respondents submitted their answers, and of course the answers themselves. So even me as the survey organizer cannot know who is answering the survey.

In the survey I do, however, provide a place where people can enter their Phoenix Rising member name, should they wish to do so. If you do enter your member name, then this will appear in the spreadsheet row which contains your answer responses.

This can be useful if you want to compare your answers to the answers given by other people, as you will be able to identify your spreadsheet row by your member name. But providing your member name is entirely optional, and many people answering the survey have chosen not to provide it. Also, even if you do provide it, and you later change your mind, you can go back and delete it, because as I explained, the survey is updatable, and you can change, add to or delete your answers at any time in the future.

I hope that helps put your mind at rest regarding privacy.

 

[StarChild56]

I appreciate your privacy concerns. When I set up this survey, I wanted to ensure that it was absolutely anonymous, so that I could tell people with confidence that it was anonymous, which I think makes people feel more comfortable about answering it.

So I spent some time investigating the degree of anonymity provided by Google Forms, to make sure that personal details were not revealed. It turns out that Google do a good job in keeping survey respondents anonymous — even from me, the survey organizer. Even the survey organizer cannot know your details.

When you set up a Google Forms survey, Google provides summarized results of the survey in graphical form (which you can see here). You can also see the individual answers from each respondent (which you can see in spreadsheet form here, where each horizontal row is a set of answers from one person). All that you see in these two web pages is all that I can see, as the survey organizer. So I do not have any more information than the info shown in those two page.

On those two pages, you can see that Google does not reveal the respondent's name, email, or even their Internet IP address. No identifying info is revealed. The only thing that is marked down is the date and time which respondents submitted their answers, and of course the answers themselves. So even me as the survey organizer cannot know who is answering the survey.

In the survey I do, however, provide a place where people can enter their Phoenix Rising member name, should they wish to do so. If you do enter your member name, then this will appear in the spreadsheet row which contains your answer responses.

This can be useful if you want to compare your answers to the answers given by other people, as you will be able to identify your spreadsheet row by your member name. But providing your member name is entirely optional, and many people answering the survey have chosen not to provide it. Also, even if you do provide it, and you later change your mind, you can go back and delete it, because as I explained, the survey is updatable, and you can change, add to or delete your answers at any time in the future.

I hope that helps put your mind at rest regarding privacy.

Yrs it totally addresses my concerns- thank you so much!

I am in the waiting room at PT so can't answer now but will when I get home.

 

[StarChild56]

I finished the survey...But for this one below, I assume you mean IgM positive? And for for me it was IgM positive, I had EBV Viremia for some time but it finally not positive a while before my surgery. So I left some questions blank as was not sure how to answer.

Also, I had IGM pos VZV, and have for a long time before surgery (do not know if it has gone down yet).

Here are the chronic active infections below:

 

[StarChild56]

Shoot - cause I had very high IgG to some of those listed but not IgM

 

[Hip]

I finished the survey...But for this one below, I assume you mean IgM positive?

Thanks very much for answering the survey, StarChild56.

This chronic active infections question not an easy one to answer accurately, because even among ME/CFS doctors, there is a lack of consistency about the criteria they use to detect and diagnose a chronic active infection. But if an ME/CFS doctor has told you that you have a chronic active infection(s), then please indicate which one(s) in the survey.

If you did not see an ME/CFS doctor, and instead got viral blood tests done by a primary care doctor or an infectious disease specialist, these guys are usually not familiar with ME/CFS viral testing, so you usually cannot rely on their diagnosis. ME/CFS doctors have a different way of diagnosing chronic active infection, often based on the patient having substantially elevated IgG. Whereas infectious disease specialist usually ignore high IgG if IgM is low.

The criteria for diagnosing chronic active infection summarized in this mini roadmap document should give you an indication of how ME/CFS doctors detect such infections.

But don't worry too much about this question. I think the best way of seeing if an ME/CFS patient's illness is linked to infection is just to observe whether their ME/CFS started with an infectious episode. If it did, then the illness may well be driven by a chronic active infection.

 

[StarChild56]

Thanks very much for answering the survey, StarChild56.

This chronic active infections question not an easy one to answer accurately, because even among ME/CFS doctors, there is a lack of consistency about the criteria they use to detect and diagnose a chronic active infection. But if an ME/CFS doctor has told you that you have a chronic active infection(s), then please indicate which one(s) in the survey.

If you did not see an ME/CFS doctor, and instead got viral blood tests done by a primary care doctor or an infectious disease specialist, these guys are usually not familiar with ME/CFS viral testing, so you usually cannot rely on their diagnosis. ME/CFS doctors have a different way of diagnosing chronic active infection, often based on the patient having substantially elevated IgG. Whereas infectious disease specialist usually ignore high IgG if IgM is low.

The criteria for diagnosing chronic active infection summarized in this mini roadmap document should give you an indication of how ME/CFS doctors detect such infections.

But don't worry too much about this question. I think the best way of seeing if an ME/CFS patient's illness is linked to infection is just to observe whether their ME/CFS started with an infectious episode. If it did, then the illness may well be driven by a chronic active infection.

Thanks.

I have a specialist, ran all the tests.

I apologize, but I do not have the mental acuity to delve into a roadmap...I have had extremely high IgG for quite a number of viruses and some IgMs. I just answered based off of IgM - which I believe were only 2 or 3.

*my brain fog has improved a lot, but still have it and it goes up and down. I tend to use what I have on essential daily life things or the never ending on going insurance/billing issues.

 

[StarChild56]

@Hip
I apologize but I am struggling with a question.

Here is my BDI according to Dr. B, and it includes with traction:

On the survey the question seems to show a higher number as more pathological, but on my BDI report my number gets HIGHER with traction, and higher yet with heavier traction. Dr. B told me that my BDI during Invasive Traction was "very positive". For some reason, I assumed that since the number rose with Invasive Traction, that was "good". That when I am fused, it mimics the invasive traction (or rather, vice versa) meaning I want a higher BDI. A higher BDI being a good thing, the fusion achieving it.

So I am very confused. I do not know how to answer the question on the survey. @jeff_w maybe you could help me, too. I realize I must just have a mental block with these measurements, I swear they bedevil me every time. Here is the screen shot with the survey question:
**edited to add: I ended up choosing "pathological" because it noted over 2 is pathological). Hopefully I chose correctly**

 

[StarChild56]

So sorry, @Hip

I just received my images last night, from Dr. B. I also am - well - completely horrid at any of this measurement/terms information. I have a weird inability to learn it.

So the survey asks:

Is your Grabb-Oakes normal, pathological or borderline?
Here we are referring to your Grabb-Oakes value measured with your head in the neutral position (not in flexion or extension). If your Grabb-Oakes is less than 6 mm then it is normal. If your Grabb-Oakes is 9 mm or more it is pathological, and indicates brainstem compression. If your Grabb-Oakes is in the range 6 mm to < 9 mm then it is borderline.

In this image, is the "Length: 6.75 mm" the Grabb-Oakes? If so, then mine is barely "Borderline"...or am I way off base. My apologies.

 

[Hip]

I ended up choosing "pathological" because it noted over 2 is pathological).

You made the right choice!

What Dr B calls the dynamic BDI is just the difference in BDI value in the off traction state, compared to when you are on traction. So off traction you have a BDI of 4.1 mm, and when on traction of 40 lbs, you have a BDI of 6.8 mm. So the difference between these two figures is 2.7 mm, and so 2.7 mm is you dynamic BDI. So you answered correctly, as your dynamic BDI is over 2 mm.

In this image, is the "Length: 6.75 mm" the Grabb-Oakes? If so, then mine is barely "Borderline"...or am I way off base.

You got it right again!

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.

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.

 

[pattismith]

@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.

 

[pattismith]

@Hip
I apologize but I am struggling with a question.

Here is my BDI according to Dr. B, and it includes with traction:
View attachment 34793

On the survey the question seems to show a higher number as more pathological, but on my BDI report my number gets HIGHER with traction, and higher yet with heavier traction. Dr. B told me that my BDI during Invasive Traction was "very positive". For some reason, I assumed that since the number rose with Invasive Traction, that was "good". That when I am fused, it mimics the invasive traction (or rather, vice versa) meaning I want a higher BDI. A higher BDI being a good thing, the fusion achieving it.

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?

 

[Inara]

• Tension headaches = mild to moderate pain on both sides of the head, sometimes involving pain or pressure behind the eyes, which last from 30 minutes to a few days.
• Migraine headaches = moderate to severe throbbing pain that lasts for a few hours to several days, normally on one side of the head only, and possibly also behind one eye only.
• Cluster headaches = severe burning or piercing pain behind the eyes or temples on one or both sides, lasting up to 3 hours; cluster headaches can appear once daily, or recur several times on the same day.
• Occipital headache = severe jabbing pain in the back of the head and neck, which may sometimes spread behind the eyes and forehead, lasting for hours to several days.
• Coat-hanger headache = pain in the head along with a tight sore trapezius shoulder muscle on both sides, or on one side only.
• Sinus headaches = deep and constant pain in your cheekbone, forehead or bridge of your nose which often lasts days.
• Other type of headache

@Hip, where do you put concussion-headache or concussion-like headaches? (Concussion-like means for me headache on both sides, throbbing and pulsing, like the head wants to explode or implode; it might lead to nausea, too. A bit like my migraines...just a bit different.) 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. These are definitely migraine attacks/migraines (partly with aura). My headaches of different types are always on both sides, that's why they're always subsumed under "tension headaches" which is simply incorrect. My experience with tension headaches is that they get better or go away with exercise or activity, and I would classify them as relatively mild (meaning there is something but it doesn't really disturb you and can be easily ignored; barely need pain meds). My headaches today get worse with activity (or being upright) and they're quite a nuisance, to say it nicely.

I once was diagnosed with "tension headache" although I had a concussion - maybe because my headaches are on both sides, always, including my headaches from concussion. Obviously "headache on both sides" is standardly subsumed under "tension headache" which is wrong in my view. Tension headache means, to my knowledge, the neck/shoulder girdle muscles are tense and "pull" on the head? So relaxing the muscles would lead to improvement.

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".

Edit: Oh, I think the survey is great!

Edit 2: I see the category "other type of headache", but I am not happy to put my headaches there either.