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.
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?