Steps for Getting Evaluated for CCI/AAI
1. Contact the neurosurgeon you want to consult with, and ask what imaging they want. Then, get a local doctor's order for that very specific imaging. Your primary care doctor can order it for you, and you can often do the imaging locally. The imaging will be of your cervical spine. An MRI is the gold standard, and X-rays are insufficient. Most neurosurgeons who understand CCI/AAI want dynamic imaging, such as:
You will find that different neurosurgeons will have slightly different preferences for imaging. They update their preferred imaging as knowledge advances, so you'll need to call their offices to verify which imaging they prefer.
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 CCI/AAI literate neurosurgeons. You can do this step on your own, even if your ordering physician wants to wait for the written report or tries to discourage you from seeking an expert neurosurgeon. 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 cannot be relied upon to find this problem. This report may even say you're normal, depending on the knowledge level of the radiologist. Try to make sure your ordering physician understands this ahead of time. This will make it less likely that you'll be dismissed. 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.)
- Upright MRIs with flexion, extension, and neutral views.
- Sometimes, they'll also want supine CT scans with rotational views.
You will find that different neurosurgeons will have slightly different preferences for imaging. They update their preferred imaging as knowledge advances, so you'll need to call their offices to verify which imaging they prefer.
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 CCI/AAI literate neurosurgeons. You can do this step on your own, even if your ordering physician wants to wait for the written report or tries to discourage you from seeking an expert neurosurgeon. 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 cannot be relied upon to find this problem. This report may even say you're normal, depending on the knowledge level of the radiologist. Try to make sure your ordering physician understands this ahead of time. This will make it less likely that you'll be dismissed. 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.)