By Jeff Wood
Update January 20th, 2020: Emerging Non-Surgical Interventions, Regenerative Medicine
Of late, some people in the ME and EDS communities, who have been diagnosed with craniocervical instability (CCI), have reported symptom improvement after having stem cells (autologous mesenchymal) injected into their lax ligaments. In some cases, symptom improvement has included POTS and PEM. Some have experienced enough improvement to avoid a fusion surgery, some have reported modest improvement, and a some have reported no improvement. This stem cell procedure is currently considered experimental, and there is now an ongoing double-blinded randomized controlled trial. In my opinion, the emerging field of regenerative medicine is quite promising! Keep in mind that common comorbidities of CCI/AAI are Chiari, stenosis, and tethered cord -- all of which would need to be addressed by a specialist neurosurgeon. Some in our community are taking a hybrid approach to treatment, simultaneously seeing both a specialist neurosurgeon and a regenerative medicine physician. More to come on this topic!
If you are wanting to see a neurosurgeon, the following evaluation path has worked for many in our community.
Contacting a Neurosurgeon: Each neurosurgeon has their own specific, detailed protocol for people looking to become their patients. The first and most important step is to contact the neurosurgeon you want to consult with and ask the following questions:
Some neurosurgeons will require an MRI of your cervical spine only -- while others may want an MRI of your entire spine. Some will want your MRI to have flexion, extension, and neutral views. Some will want your MRI to be performed in an upright position. Some will want a CT scan, while others might want a digital motion x-ray (DMX).
Bottom line: These specialist neurosurgeons continually update their requirements as knowledge advances. So, it bears repeating that before proceeding with any of this, contact the specialist neurosurgeon to confirm exactly what information you need to send them (written history, discs, reports, etc.).
Generally speaking, a "regular" neurosurgeon will not be a specialist in this area. They are often dismissive, so be prepared for that! A neurologist isn't a specialist, either.
Imaging: If you will be doing imaging, ask the imaging center to give you at least two CD copies of your results. You should try to get those CDs right away, before you leave the imaging center. This will not possible in every jurisdiction, but if you can do this, it can save you a lot of time and aggravation down the road!
Important: A week or so after you do the imaging, as a general rule, your ordering physician will get a written radiology report. This report will explain some the findings on your imaging. After reading hundreds of people's stories in the community, it is clear that this radiology report alone cannot usually be relied upon to find various complex problems, including CCI/AAI, Chiari, and tethered cord. A radiology report is an initial screening tool, but for true expertise, you will need to seek an opinion from a neurosurgeon who specializes in these issues.
Reliability of Radiology Reports: 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: 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 conditions like CCI/AAI, Chiari, and tethered cord. 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 should carry more weight than relying on the radiology report alone. Even if your doctor is ME/CFS-literate, this is likely an relatively new area of investigation for him or her.
- What is their exact process for becoming a patient?
- Be physically prepared to write down the details, if you are able to do so.
- If they want you to do imaging studies, ask them:
- Can that imaging be done locally to you, OR, should that imaging be done at their location?
- Can your primary care doctor, or your ME/CFS doctor, write the order for this imaging?
- If so, what exact wording should your own doctor use when writing the order?
Some neurosurgeons will require an MRI of your cervical spine only -- while others may want an MRI of your entire spine. Some will want your MRI to have flexion, extension, and neutral views. Some will want your MRI to be performed in an upright position. Some will want a CT scan, while others might want a digital motion x-ray (DMX).
Bottom line: These specialist neurosurgeons continually update their requirements as knowledge advances. So, it bears repeating that before proceeding with any of this, contact the specialist neurosurgeon to confirm exactly what information you need to send them (written history, discs, reports, etc.).
Generally speaking, a "regular" neurosurgeon will not be a specialist in this area. They are often dismissive, so be prepared for that! A neurologist isn't a specialist, either.
Imaging: If you will be doing imaging, ask the imaging center to give you at least two CD copies of your results. You should try to get those CDs right away, before you leave the imaging center. This will not possible in every jurisdiction, but if you can do this, it can save you a lot of time and aggravation down the road!
Important: A week or so after you do the imaging, as a general rule, your ordering physician will get a written radiology report. This report will explain some the findings on your imaging. After reading hundreds of people's stories in the community, it is clear that this radiology report alone cannot usually be relied upon to find various complex problems, including CCI/AAI, Chiari, and tethered cord. A radiology report is an initial screening tool, but for true expertise, you will need to seek an opinion from a neurosurgeon who specializes in these issues.
Reliability of Radiology Reports: 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: 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 conditions like CCI/AAI, Chiari, and tethered cord. 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 should carry more weight than relying on the radiology report alone. Even if your doctor is ME/CFS-literate, this is likely an relatively new area of investigation for him or her.