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ME/CFS and Fibromyalgia Craniocervical Instability Surgery Effectiveness Poll

X-ray - instability

An X-ray of an neck being flexed back and forth to check for instability. (X-rays are not sufficient to test for this condition, however.)

This survey is an attempt to learn about the effectiveness of craniocervical / atlantoxial instability surgery in people diagnosed with chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM).

Find out more about these and other spinal issues in ME/CFS and FM in Health RIsing’s ME/CFS and FM Spinal Issues Series

If you’ve been diagnosed with ME/CFS or FM and had CCI/AAI six months or more ago please take the survey.

ME/CFS and Fibromyalgia Craniocervical Instability Surgery Effectiveness Poll

A survey to assess the effectiveness of CCI/AAI surgery in chronic fatigue syndrome (ME/CFS) and fibromyalgia. If you have had this surgery please do not report on its effectiveness until at least six months have passed. (* denotes required responses.)

Initial Diagnosis / Diagnoses*
- Fibromyalgia
- Chronic fatigue syndrome (ME/CFS)
- Postural orthostatic tachycardia syndrome
- Joint hypermobility
- Ehlers Danlos Syndrome
- Mast cell activation syndrome
- Migraine
- Anxiety
- Depression
Other diagnoses
Results of MRI*
- Normal
- Narrowed spinal canal (stenosis)
- Craniocervical Instability and/or atlantoaxial instability
- Spondylosis (osteoarthritis)
- Chiari malformation
- Cerebral spinal fluid leak
- Intracranial hypertension
- Tethered Cord Syndrome
- Other spinal issue
Neurosurgeon who did the surgery
Time Since Surgery*
- 6 - 9 months
- 9 months - 1 year
- > 1 year
Functionality prior to CCI/AAI surgery - From Dr. David Bell's CFS Ability Scale*
- 0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.
- 1: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration
- 2: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day.
- 3: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day,
- 4: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day,
- 5: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods.
- 6: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.
- 7: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.
- 8: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.
- 9: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.
- 10: No symptoms with exercise. Normal overall activity.
Functionality after CCI/AAI surgery (From Dr. David Bell's CFS Ability Scale)*
- 0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.
- 10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked cognitive symptoms
- 20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate for more than 1 hour a day.
- 30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able to perform deskwork 2-3 hours a day, but requires rest periods.
- 40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.
- 50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty or deskwork 4 - 5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.
- 60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able to work full time in light activity (sitting) if hours are flexible.
- 70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90% of expected except for activities requiring exertion. Able to work/do housework full time with difficulty. Needs to rest in day.
- 80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.
- 90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to work full time without difficulty.
- 100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time with no difficulty.
Effect of surgery on fatigue*
Highly effective Somewhat effective No difference Made fatigue somewhat worse Made fatigue much worse.
Effect of surgery on pain*
Highly effective Moderately effective No effect Made pain moderately worse Made pain much worse
Effect of surgery on dizziness, rapid heart beats, fatigue or other symptoms of orthostatic intolerance upon standing*
Very effective Moderately effective No effect Made symptoms moderately worse Made symptoms much better
Effect of surgery on overall health*
Very effective Moderately effective No effects Made health moderately worse Made health much worse
Comments
Please take the ME/CFS and Fibromyalgia Craniocervical Prevalence Poll here -

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