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

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After another round of severe swelling at the base of my skull and all the way down into the top of my shoulderblades I am wondering about CCI/AAI/Chiari again.

The survery results are interesting, is that what an average 85% respondents have CCI? With around 40 to 50 unique respondents? Even so thanks for putting this together Hip.
 

Neunistiva

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Just a reminder - if you are IgG positive that does not mean you have chronic active Epstein-Barr infection. Even if titers are high. It just means you came in contact with the virus in the past and your body created immunity against it. 90% of adult humans are EBV IgG positive.

Chronic active EBV infection is extremely rare, occurs mostly in Asian children and is very deadly.

It is very unlikely that 17 out of 23 people who responded have that.
 
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I agree with that. I have latent ebv apparently but as it's another armin labs test it will just be my previous immune response showing up on the blood test. All my acute tests were always negative even at my time of becoming sick.
 

Hip

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How many CMS symptoms do the negatives have?
There are very few negatives, so the statistical basis is not great (and also they may not be true negatives across the range of conditions, as these negatives may not have been tested for things like cerebrospinal fluid leak or intracranial hypertension).

But for the four negatives that we have so far, their average CMS score is 9.3 out of 32 symptoms. Whereas the average CMS score for those positive for CCI is 16.6 out 32.
 

JenB

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Question regarding: “Long-term results of surgery: how severe is your ME/CFS now?”

How will you interpret these results if you don’t ask people which surgeries they had?
 

Hip

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Question regarding: “Long-term results of surgery: how severe is your ME/CFS now?”

How will you interpret these results if you don’t ask people which surgeries they had?
I can add a question about which surgeries the respondent has had.

I assumed that the surgeries would mainly be fusion surgeries for CCI/AAI, and/or Chiari decompression surgery (with the possibility of corrective tethered cord surgeries required later). So that is why I did not add a question about which surgery.

Can you suggest a list of surgeries that should be included in the question? It would be a tick box question, so that respondents can select more that one surgery. So the list might start:
  • Fusion surgery for CCI and/or AAI
  • Fusion surgery for subaxial instability
  • Chiari decompression surgery
  • Tethered cord surgery
 

JenB

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I can add a question about which surgeries the respondent has had.

I assumed that the surgeries would mainly be fusion surgeries for CCI/AAI, and/or Chiari decompression surgery (with the possibility of corrective tethered cord surgeries required later). So that is why I did not add a question about which surgery.

Can you suggest a list of surgeries that should be included in the question? It would be a tick box question, so that respondents can select more that one surgery. So the list might start:
  • Fusion surgery for CCI and/or AAI
  • Fusion surgery for subaxial instability
  • Chiari decompression surgery
  • Tethered cord surgery


surgery for cervical stenosis is going to be the second or third most common surgery

I think you should do a multi-select, with the options of:

Craniocervical fusion
Anterior Cervical Discectomy & Fusion (ACDF)*
Other fusion
Tethered cord release (invasive)
Tethered cord release (minimally invasive)
Chiari decompression
Blood patch
Transverse sinus stent
Jugular vein stent
Other (fill in the blank)


And then:
If you had a fusion, at what levels?
And use two drop downs that each go from C0 to T1 at least.



*this is the one I most commonly see people getting for cervical stenosis but you should really research or ask as there is more than one type

@jeff_w may have more ideas
 

winterschlaf

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Seeking survey respondents diagnosed negative for structural issues by Prof F Smith who were later positively diagnosed by a neurosurgeon, to talk through those experiences, for my own clarity and peace of mind.

Going to make this into a separate post with more details, so as to keep this thread clean.

Any responses -- and all input most welcome -- kindly head here:

https://forums.phoenixrising.me/thr...positively-diagnosed-by-a-neurosurgeon.78628/

@Hip if the presence of this post is irksome/derailing, just let me know and I shall remove it.
W
 

Hip

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@Hip if the presence of this post is irksome/derailing, just let me know and I shall remove it.
W
It's perfectly fine by me, @winterschlaf. The survey results show quite a bit of difference in the positive diagnosis rate between Prof Smith and Dr Gilete, with their CCI positive diagnosis rates being 95% and 52% respectively.
 
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winterschlaf

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It's perfectly fine by me, @winterschlaf. The survey results show quite a bit of difference in the positive diagnosis rate between Prof Smith and Dr Gilete, with their CCI positive diagnosis rates being 95% and 52% respectively.
This data was perhaps even more comforting than a detailed personal anecdote. (I understood the numbers of the lower diagnostic rate to be Prof Smith's, based on context).

That's really quite a high rate of diagnostic "miss", or disagreement, at best; with Dr G being the one of the two clinicians involved who would initiate further steps, post-diagnosis.

I wonder what Prof Smith makes of the discrepancy, if he's aware. I gleaned what could be a little insight in my dealings with Medserena, but that type of speculation seems extra to the purposes of this thread.

I will just say, I hope for better communication and discussion between the few knowledgeable in this field, to save patients with severe neurological symptoms (& everyone else) the burden of false negatives.

But that will surely come in time.
 
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Craniocervical Instability, Chiari and Spinal Stenosis Survey

For ME/CFS patients diagnosed positive or negative for CCI and related conditions

This survey is for ME/CFS patients who sent their MRI or CT scan to Dr Gilete, Dr Bolognese, Dr Henderson, Prof Smith or another neurosurgeon and received a positive or negative diagnosis for craniocervical instability (CCI), Chiari, cervical spinal stenosis or related conditions.


Click HERE to go to the survey (it employs Google Forms, and is anonymous)


Please fill out this survey whether you were tested positive or negative for CCI and related conditions (it is very important that people who tested negative for CCI and related conditions also answer this survey if they kindly would, so that we can see the difference in characteristics between ME/CFS patients who are positive for CCI, and ME/CFS patients who are negative).

The purpose of this survey is to examine the link between CCI and ME/CFS, by looking at the patterns of symptoms, infections, co-morbid diseases, craniocervical measurements, etc in ME/CFS patients diagnosed positive as well as negative for CCI.

The survey is intended to answer many questions, such as:
  • The difference in symptom profile between CCI ME/CFS patients vs non-CCI ME/CFS patients, and whether CCI patients have for example more dysautonomic symptoms like POTS
  • Whether CCI ME/CFS patients typically have the cervical medullary syndrome (CMS) symptoms caused by CCI, such as severe headache, neck pain, "bobble head", etc
  • The type of CCI ME/CFS patients typically have (there are different forms of CCI)
  • Whether CCI ME/CFS patients previously suffered a major physical trauma to their head or neck at some point in their life
  • Whether CCI ME/CFS patients often have conditions such as hypermobile Ehlers-Danlos syndrome or rheumatoid arthritis, which are known to predispose to CCI
  • Whether CCI ME/CFS patients had sudden or gradual onset of ME/CFS, and whether they had a viral or non-viral trigger to their ME/CFS
  • Whether CCI ME/CFS patients typically have chronic active viral or bacterial infections
  • The outcome of surgery, prolotherapy or stem cell therapy for CCI, for those who had these treatments


If you have any difficulties in filling out this survey and would like assistance or to ask a question, please post your question in this thread.

If there is wording in the survey that you find unclear, please point it out in this thread, so that the wording can be improved.

If you know of any ME/CFS patient who was tested for CCI, but does not come to these forums much, I'd be most grateful if you could draw their attention to this survey.

You need a Google account to answer this survey. Google ensures your identity remains anonymous. If you do not have a Google account, you can easily set one up here: accounts.google.com/signup

Using a Google account has the advantage that because your answers are linked to your account, you can come back to the survey at any time in the future to update or add to your answer responses — useful if you have new info to add, such as the results of surgery, prolotherapy or stem cell therapy if you opt for these. (If you return to the survey to update your answers, you will see a message saying "You've already responded", but underneath that message, if you click on "Edit your response" you will be able to amend your answers).

Prof Ron Davis and Dr William Weir are interested in the CCI connection to ME/CFS, so they may like to see the survey results.

Thanks to @JenB, @jeff_w, @bombsh3ll, @Silencio, @valentinelynx, @RiverJewel and others for their help and advice in creating this survey questionnaire.

@mattie also set up a very simple Phoenix Rising forum poll here, which those tested for CCI may want to answer as well.


Note: do not give anyone else the URL link to your personal survey answers. Everyone has to log into the survey via their Google account, and then this directs you to a special URL for the survey which is uniquely yours. If you share that unique URL with others (which you should not do), then other people can change your answers.




View Survey Results

The summarized results in graph form HERE.

Note: in these graph form results, in some questions, the percentages in the pie charts are not really correct, because unfortunately not everyone who took the survey responded to every question. So the pie chart percentages are based on the number of people who answered each question, not the total number of people answering the survey. In some cases however this is appropriate (for example, in the questions about the CCI diagnosis rate of each neurosurgeon, we want only those who sent their scans to a particular neurosurgeon to respond to the question). But in general, to calculate the percentages accurately, based on the total number of people answering the survey, it is better to use the data in the spreadsheet, which is found here:

Summary page in spreadsheet format HERE.
Responses (raw data) in spreadsheet format here.

You can flip between these two spreadsheet pages by clicking the Responses and Summary tabs at the bottom of the spreadsheet page.
View attachment 34406



Some Results From the Survey

Some findings from the survey, as the results stand on 23 November 2019. These results are derived from the spreadsheet data.

• 91% of patients tested positive for at least one diagnosis, out of CCI, AAI, Chiari, cervical spinal stenosis, subaxial instability, tethered cord, syringomyelia, cerebrospinal fluid leak, intracranial hypertension and intracranial hypotension.

• 79% of patients tested were positive for craniocervical instability (CCI).

• In those positive for CCI, around 70% also had atlantoaxial instability (AAI). It was rare to have AAI on its own without CCI.

• In those positive for CCI, 48% had their ME/CFS start after an infectious episode (such as a flu-like or gastrointestinal illness, or mononucleosis). Out of these infectious onsets, 57% had a rapid onset (ME/CFS appeared within days of the infection), and 29% had a gradual onset (they slowly descended into ME/CFS over a period of a few months after the infection).

Physical trauma was the trigger of ME/CFS in only 9% of those positive for CCI. However, around 59% of these CCI positives reported they experienced a major trauma to the head or neck, or a serious motor vehicle accident, previously in their lives.

• About 27% of those positive for CCI were diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). And another 27% report that they suspect they have hEDS, but are not formally diagnosed.

• The average number of cervical medullary syndrome (CMS) symptoms for those positive for CCI is around 17 out 32. This suggests most ME/CFS patients with CCI will manifest many CMS symptoms as well as their ME/CFS symptoms. About 84% of those positive for CCI have 12 or more CMS symptoms.

• Of those positive for CCI, a pathological translational BAI is found in around 46%, a pathological CXA is found in around 38%, a pathological retroflexed odontoid is found in around 21%, a pathological Grabb-Oakes is found in 16%, a pathological odontoid over Chamberlain's line in 16%, and a pathological BAI is found in around 9%.

Chiari was found in 12% of patients answering the survey.

• For those positive for CCI, there were a lot of severe or very severe ME/CFS patients: 30% were severe, and 20% very severe.

• In those positive for CCI, 36% experience transient paralysis in certain head/neck positions or worsening symptoms in certain head/neck positions. For those with such head/neck position sensitivity, there was a correlation with having a retroflexed odontoid (RO), or an odontoid 3 mm or more over Chamberlain's line (OOC). In those with head/neck position sensitivity, 56% had RO and 31% had OOC; whereas in those without such sensitivity, 7% had RO and 7% had OOC. So it may be the odontoid impinging on the brainstem that causes the transient paralysis and worsening of symptoms in certain head orientations.




This survey is not able to determine the percentage of ME/CFS patients who have CCI or related conditions, for two reasons:

Firstly, people getting tested for CCI are self-selecting, and most likely decide to get tested because they have cervical medullary syndrome symptoms such as neck pain, severe headaches, etc, or they have previously had a neck injury, or they notice that their symptoms get worse in certain head and neck orientations. These are all suggestive of CCI. So those getting tested will likely have a higher prevalence of CCI than the general ME/CFS population.

Secondly, those who test negative for CCI and related conditions tend to lose all interest in the subject, and thus do not answer to the survey. Thus there is bias of towards only CCI-positive patients answering the survey.
I recently sent images to Dr. B. and got a reply that my 'case' doesn't meet the parameters of their office. I am planning to forward the imaging to Dr. H. for another set of eyes. If Dr. H. comes to the same conclusion, does this constitute a negative diagnosis?
 
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I recently sent images to Dr. B. and got a reply that my 'case' doesn't meet the parameters of their office. I am planning to forward the imaging to Dr. H. for another set of eyes. If Dr. H. comes to the same conclusion, does this constitute a negative diagnosis?
Did he recommend traction? For me he said we would accept my case if I could report positive results via traction.
 
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I have received neither a positive or negative diagnosis from Dr. Gilete. Instead both CCI and AAI have been mentioned as possible, and Amy recommends a face to face consultation and a cine MRI at their clinic to do the final diagnosis. I don't plan to do that for now, so I think I might not fill out the survey. @Hip

I think I will get and send him an MRV now as it will at least provide supplemental information. I think might investigate the possibility of traction with a PT next.

My report is on this thread if anyone is interested: https://forums.phoenixrising.me/thr...ck-evaluation-by-dr-gilete.76791/post-2249917
 
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I was accepted by Dr Bolognese for a video consult. He says my morphometrics are close to negative but not quite. I didn't get my measurements yet. I didn't have a positive enough reaction to traction but I had a major rebound reaction, which Dr B says is a mystery.
So not enough s/s or diagnostics to be positive for CCI but enough to not be able to rule it out.
Same for tethered cord.
I have epilepsy and more traction or evasive diagnostics increase my seizure risk so he said get better seizure control and try traction again carefully putting cervical collar on as traction is released. And if I have a very positive reaction to get to him.
How many of us are in this gray zone? I wish the CCI survey had a spot for this. Dr B said yes he has other patients "like you" who are in these "shades of gray" diagnostically.
I haven't had an upright MRI yet.
 
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@Hip the survey asks about severe whiplash/accidents. I wasn’t sure how to answer these as to what defines major or severe? I jumped off a very high waterfall & landed awkwardly or perhaps landed fine but wonky hyper mobility caused what a Dr later diagnosed as whiplash. But I was not hospitalized did not even seek medical attn bc I was living in a 3rd world country, 22 yrs old, on a shoe string budget & did I mention I was 22 so I figured I was young, could bounce back, how naive!😆 Later on was struck by car while riding motorcycle. The impact was enough to have 30 stitches in my leg but again no spine work up or medical attn to the spine, just bad pain that I sucked up. I would not consider these “major” but I strongly believe having hEDS can turn something moderate into major impact for outcomes... your thoughts?
 

Hip

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I wasn’t sure how to answer these as to what defines major or severe? I jumped off a very high waterfall & landed awkwardly or perhaps landed fine but wonky hyper mobility caused what a Dr later diagnosed as whiplash.
If the whiplash was considered severe, then answer yes to a major physical trauma involving the head or neck.

Mild cases of whiplash can last just from just a few days to a few weeks, but more severe cases can last much longer.


I agree that the motorcycle accident does not seem severe, so I'd suggest answering no for that question about a severe motor vehicle accident.
 
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@Hip I don’t know if this is a helpful comment this late in the game, but I’ve been meaning to mention—both Dr. H and B diagnosed me with CCI based on my measurements in flexion. Standard for Dr. H, and I guess Dr. B. will use it if you foist an upright MRI on him. I know Gilette and Patel also use flex-ext measurements. Since the questions about measurements specify the neutral position, it ends up looking like translational BAI is by far the most common positive measurement, but that may not be accurate. Gilette is the only one who uses that as a primary criterion.