Steps for Getting Evaluated for CCI/AAI
The following is the most efficient evaluation path that has worked for our community.
1. Contact the neurosurgeon you want to consult with, and ask what imaging they need. Then, get a local doctor's order for that very specific imaging. Your primary care doctor can order it for you, and you may be able to find a local imaging facility. Most neurosurgeons will require:
2. Immediately after you do your scans, ask the imaging center to give you at least two CD copies. You should try to get those CDs right away, before you leave the imaging center, as this will save you a lot of time and aggravation down the road!
3. Send those CDs to a specialist, a CCI/AAI literate neurosurgeon. You can consider doing this step on your own by sending them the discs even before receiving your written radiology report. Contact your preferred specialist neurosurgeon to confirm exactly what information (discs, reports, etc.) they'd like you to send to them. Generally speaking, a "regular" neurosurgeon will not be a specialist in this area, and they are often dismissive. A neurologist isn't a specialist, either.
Important: A week or so after you do the imaging, your ordering physician will get a written radiology report explaining the findings. After reading hundreds of people's stories in the CCI/AAI community, it is clear that this radiology report alone cannot usually be relied upon to find various complex problems, including CCI/AAI. A radiology report is an initial screening tool, but for genuine expertise, you will need to seek an opinion from a neurosurgeon who specializes in these issues.
Here is an article from 2017 discussing the reliability of radiology reports, demonstrating that errors are surprisingly common, with the study finding a miss rate of 43.6%. Here is another article, examining radiologists' performance in the context of attentional blindness: 83% of radiologists failed to spot a picture of a gorilla that had been inserted into an MRI image. So you can see, radiology reports are not always infallible. Prior to embarking on your imaging investigation, try to make sure your ordering physician understands the potential limitations of radiology reports, especially for identifying a condition like CCI/AAI. This will make it less likely that you'll be dismissed by your doctor if your radiology report comes back as "normal." Emphasize to your doctor the need for an expert neurosurgeon's opinion, which will carry more weight than relying on the radiology report alone. Even if your doctor is ME/CFS-literate, this is likely an entirely new area of investigation for him or her.
(Note: In the USA, a web search will show you many upright MRI centers scattered across the country. In the UK, there are two Medserena locations that will do the required upright imaging. In Germany, there is an upright MRI center in Hannover. This is not an exhaustive list, so please do your own research and consult your local community for help finding additional locations.)
- An MRI of your cervical spine -- sometimes with flexion, extension, and neutral views.
- Sometimes, they'll also want supine cervical CT scans with rotational views.
2. Immediately after you do your scans, ask the imaging center to give you at least two CD copies. You should try to get those CDs right away, before you leave the imaging center, as this will save you a lot of time and aggravation down the road!
3. Send those CDs to a specialist, a CCI/AAI literate neurosurgeon. You can consider doing this step on your own by sending them the discs even before receiving your written radiology report. Contact your preferred specialist neurosurgeon to confirm exactly what information (discs, reports, etc.) they'd like you to send to them. Generally speaking, a "regular" neurosurgeon will not be a specialist in this area, and they are often dismissive. A neurologist isn't a specialist, either.
Important: A week or so after you do the imaging, your ordering physician will get a written radiology report explaining the findings. After reading hundreds of people's stories in the CCI/AAI community, it is clear that this radiology report alone cannot usually be relied upon to find various complex problems, including CCI/AAI. A radiology report is an initial screening tool, but for genuine expertise, you will need to seek an opinion from a neurosurgeon who specializes in these issues.
Here is an article from 2017 discussing the reliability of radiology reports, demonstrating that errors are surprisingly common, with the study finding a miss rate of 43.6%. Here is another article, examining radiologists' performance in the context of attentional blindness: 83% of radiologists failed to spot a picture of a gorilla that had been inserted into an MRI image. So you can see, radiology reports are not always infallible. Prior to embarking on your imaging investigation, try to make sure your ordering physician understands the potential limitations of radiology reports, especially for identifying a condition like CCI/AAI. This will make it less likely that you'll be dismissed by your doctor if your radiology report comes back as "normal." Emphasize to your doctor the need for an expert neurosurgeon's opinion, which will carry more weight than relying on the radiology report alone. Even if your doctor is ME/CFS-literate, this is likely an entirely new area of investigation for him or her.
(Note: In the USA, a web search will show you many upright MRI centers scattered across the country. In the UK, there are two Medserena locations that will do the required upright imaging. In Germany, there is an upright MRI center in Hannover. This is not an exhaustive list, so please do your own research and consult your local community for help finding additional locations.)