Steps for Getting Evaluated for CCI/AAI
1. Join the Facebook group "Beyond the Measurement." This is a wonderful community that can support you as you navigate the steps below.
2. Get a doctor's order for very specific imaging. You can do this imaging locally, and your primary care doctor can order it for you. The imaging needs to be of your skull and cervical spine. Most neurosurgeons who understand CCI/AAI want dynamic imaging, such as:
One of the expert neurosurgeons now prefers 3T supine MRIs. These are much easier to access and more likely to be covered by insurance. 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.
3. 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!
4. 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.
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.
2. Get a doctor's order for very specific imaging. You can do this imaging locally, and your primary care doctor can order it for you. The imaging needs to be of your skull and cervical spine. Most neurosurgeons who understand CCI/AAI want dynamic imaging, such as:
- Upright MRIs with flexion, extension, and rotational views; or,
- Supine CT scans with flexion, extension, and rotational views
One of the expert neurosurgeons now prefers 3T supine MRIs. These are much easier to access and more likely to be covered by insurance. 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.
3. 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!
4. 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.
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.