Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[hollyhaldan]

That's how I decided on which neurosurgeons I could recommend. I spent months finding surgical patients in Facebook groups and other forums. My life was on the line, and I didn't want to make a mistake.

There were about 10,000 patients, in total, in these groups. I combed through the groups' histories and read post after post of patients who had been to various neurosurgeons.

If you do this, you will see clear patterns. Some neurosurgeons had good surgical outcomes but had poor diagnostic ability. Other neurosurgeons had inconsistent or frankly poor surgical outcomes. A few had consistently good diagnostic ability as well as consistently good surgical outcomes. Those are the only ones I'm comfortable recommending.

I'd feel very wrong recommending other neurosurgeons at this time. Others might disagree, and that's fine. We're all free to make up our own minds.

Good luck with this!

Hi @jeff_w ! Thanks so much for taking the time to provide all of this information! It is truly impressive and has been very helpful.

I was referred to two different neurosurgeons near me for CCI for my friend with severe ME. I was wondering, how exactly did you find the patient stories? What facebook groups did you join besides "Beyond the Measurement?" I want to be as thorough as you were while moving forward in this process.

Also, how were you able to determine how many CCI surgeries the neurosurgeons have performed? (like for all the neurosurgeons you researched before you narrowed it down to your list of 4?)

I also noticed that Dr. Sandu's website doesn't mention Cranial Cervical Instability or Atlantoaxial Instability specifically on his website under "treatments." This obviously doesn't indicate he hasn't performed this surgery, because you wouldn't have listed him if he didn't. It does, however, mention in his bio that he has a special interest in "disorders of the craniocervical junction."

Do you think it's possible other neurosurgeons don't put it down as a treatment because it's such a specific surgery that it could be classified under a different broader type of "treatment"? How were you able to find neurosurgeons in the first place before you narrowed it down to these 4?

Unfortunately, none of the 4 neurosurgeons on your site are close enough for my friend to get to, so we are going to try and determine whether there is anyone else that could be reputable enough to contact and possibly visit. Thanks so much for your help again!

 

[Dakota15]

Just curious, does anyone have experience with Dr. Hauser (video listed above) or the Caring Medical Regenerative Medicine Clinic in IL or FL? As I live in MN, I'm just curious since IL is close to me....

 

[ehc918]

I have to wonder if neurosurgeons that have special interests in adult Chiari type 1 would be a good resource as well. I live near Denver, CO and just found a Dr. Oro outside of Denver that founded the Colorado Chiari Institute. I have yet to contact him as I am awaiting word from my primary care physician re: a referral for an upright MRI. I've also got Dr. Bolognese on my radar after contacting him via email- I got the generic initial response (go to PT for traction) and when I asked to clarify, he "all CAPS'd me his response- like he was yelling at me- haha.

 

[Wayne]

Thought I'd post a link to the following thread from four years ago, which seems like a good example of how other structural issues can also cause major dysfunction in the body. The pasted posts in this thread even make me wonder whether a tight psoas muscle can be a contributing cause of CCI/AAI. @JenB @jeff_w @Cort

Fibromyalgia Misdiagnosis -- ME/CFS Symptoms Traced to Tight Psoas Muscle

 

[ehc918]

@Wayne that is fascinating info! I had severe scoliosis diagnosed at age 13, left to right back to left- T1-L1 fusion for triple S curve with rotation of the spine as well. That was 30 years ago. I have degenerative disk disease and arthritis in my lumbar spine, and abnormal straightening of my neck with stenosis, bone spurs, and arthritis and nerve impingement. I wouldn’t be surprised if structural compromise is the cause of a subset of CFS patients.

 

[moonell]

Hey, thanks!
Im from Czech Republic - looking first for someone here and dr Gilete looks good to send results!

We have some 3T MRI here in hospitals, but no for upright. Upright is here with lover T. its OK?
Supine MRI? I will look at it in Czech language, heard for the first time.

This two MRI are "gold standard"? upright + supine?

Yeah, know "mechanicalbasis" ...this guy is here on forum, right? I write to him in few days ago.
I had a Lyme and EBV for sure when I was young, but treatments no works, looks like roots of my proglems are somewhere - maybe in my bad back!

Hi, I'm from Czechia as well (just writing in English so it's legible for others as well). There is no upright MRI in here, just one that will get you from supine to upright but they won't do the necessary dynamic imaging (flexion, extension, rotation), I triple checked with them. I had mine done in Hannover (for 900 €) and sent the imaging to dr. Gilete (250 € for online consultation), tested positive for CCI/AAI. I still need to do further testing, but he is recommending surgery. Since my symptoms are quite severe, I am seriously considering it.
I am looking for some neurosurgeons in here to evaluate me and give me some sort of report that no one in Czechia is qualified to perform such surgery to show to my health insurance company so they would cover the costs of the examinations and the surgery (since it's going to be ridiculously expensive). Let me know how you're doing with your process.

 

[Markus83]

I had mine done in Hannover (for 900 €)

Is this the normal price? Thought it would be more expensive. I had this MRI in Hannover in 2009, but flexion and extension wasn't done; what was done is rotation and tilt to left/right.

and sent the imaging to dr. Gilete

So Gilete needs flexion, extension and rotation? Does someone know if tilt right/left instead of extension/flexion would be also ok (don't think so)? Can Gilete make a definitive diagnosis just based on upright MRT without seeing you personally?

 

[ehc918]

Is it known what these doctors are finding on MRI that draws the conclusion of CCI? Some without even an in person consult or additional testing? Are they looking solely at vertebral distance in mm or are they seeing brainstem/cerebellar abutment or compression?

 

[Malea]

So Gilete needs flexion, extension and rotation?

Yes (and neutral)

Does someone know if tilt right/left instead of extension/flexion would be also ok (don't think so)?

You can ask, but to be fully diagnosed he generally wants everything.
The rotational stuff is for AAI. The flexion/extension is for the different (partly translational) CCI-measurements (CXA, BAI, Grabbs Oakes)

Can Gilete make a definitive diagnosis just based on upright MRT without seeing you personally?

Yes, if you order that, you will get a report with diagnoses.

 

[Malea]

Is it known what these doctors are finding on MRI that draws the conclusion of CCI?

There are several measurements done for CCI, @Hip made some great posts about this in the past few weeks.

It is also explained here:
https://www.instabile-halswirbelsaeule.de/angles-which-should-be-measured/

 

[Waverunner]

@moonell: Can I ask if you did an upright MRI of the cervical spine or just the craniocervical junction? Which one does Dr. Gilete need?

And how do you send the scans to Dr. Gilete? I got a CD with the images (upright craniocervical junction including flexion, extension, rotation), am I supposed to duplicate the CD or is there a way to send it online?

Is it helpful if you send additional files? E.g. I got an MRI of the head (3 T, no contrast), head (1.5 T, with contrast including angiography) and I will get a scan of the full cervical spine in two weeks (supine, probably 1.5 T).

 

[Joly]

@moonell: Can I ask if you did an upright MRI of the cervical spine or just the craniocervical junction? Which one does Dr. Gilete need?

And how do you send the scans to Dr. Gilete? I got a CD with the images (upright craniocervical junction including flexion, extension, rotation), am I supposed to duplicate the CD or is there a way to send it online?

Is it helpful if you send additional files? E.g. I got an MRI of the head (3 T, no contrast), head (1.5 T, with contrast including angiography) and I will get a scan of the full cervical spine in two weeks (supine, probably 1.5 T).

Hi @Waverunner hopefully I can answer some of these questions for you.

You can contact Dr Gilete's assistant Amy via his website to request a consultation on your MRIs: https://drgilete.com/contact-us/

Once you have arranged for Dr G to view your scans, Amy will send you a link to a Dropbox where you can upload the files from your CD. There is a step by step guide for how to do this provided.

Dr Gilete requires an upright MRI of the cervical spine and craniocervical junction in neutral, flexion, extension, and rotation. Do your images include neutral views of your cervical spine from the side? If so, it is possible you have all the imaging he requires, but I would double check with Amy to make sure of this.

You can also ask her if any of your other scans would be helpful, I know for further assessment Dr Gilete sometimes requests DMX scans and angiograms so it is definitely worth asking if you should include them.

I hope this helps!

 

[Hip]

Is it known what these doctors are finding on MRI that draws the conclusion of CCI? Some without even an in person consult or additional testing? Are they looking solely at vertebral distance in mm or are they seeing brainstem/cerebellar abutment or compression?

These neurosurgeons make several measurements of bone positions on the MRI or CT scans to detect CCI: the clivo-axial angle, which is detailed in this post, is one of them; the other measurements are listed in the second half of this post.

JenB has also written a great MEpedia article on CCI, which details these measurements in a table about half way down the page.

 

[Waverunner]

@Joly: Thank you so much for your reply. This should be pinned somewhere or they should use it on their webpage.

I still need the upright MRI of the cervical spine. Right now, I only have the upright MRI of the craniocervical junction. It includes neutral, flexion, extension and rotation.

 

[Mere72]

I still need the upright MRI of the cervical spine. Right now, I only have the upright MRI of the craniocervical junction. It includes neutral, flexion, extension and rotation.

Wouldn't the upright MRI of craniocervical junction with neutral, flexion, extension and rotation be enough to measure all that is needed for all cervical spine issues? I don't think another MRI of cervical spine is needed, anyone know for sure?

 

[ehc918]

@Hip @Malea THANK YOU! This thread is so long I’ve had trouble with searching to scrounge info. I very much appreciate it.

 

[JasonUT]

And then she wonders about the mechanism: "Or maybe we develop actually hypoxia due to poor local blood flow (because of brainstem/ANS dysfunction), and the body is rightly switching to anaerobic metabolism? But why can crashes last so long? And why did increasing my acetylcholine always shorten them?" (06/14/19).

The brain stem is critical for autonomic function. A compressed brain stem may cause a very overworked and inefficient autonomic response.
https://www.ncbi.nlm.nih.gov/pubmed/28120078

Acetylcholine is the primary neurotransmitter of the autonomic nervous system. A car uses a lot more fuel when the tires are low on pressure. Perhaps the brain stem uses a lot more acetylcholine when it is compressed.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3466476/

Per micronutrient testing, I am borderline deficient in choline and functionally deficient in B1. Both are required for the production of acetylcholine. I have to take large doses of both in the form of Lipothiamine and Lecithin.
https://www.ncbi.nlm.nih.gov/pubmed/6694525

 

[Mere72]

Can someone please clarify... I'm reading about this on several threads and I'm a little confused... When you get an upright MRI of craniocervical junction, does that NOT include the full cervical spine? These would be two different scans?
When Dr B, G & H request the craniocervical junction MRI's (in various positioning), does this NOT show other issues that might possibly need fusing, such as when patients say they also needed C2-C6 fused, for example?

 

[ehc918]

It is confusing. I found an upright MRI facility about an hour away. The technician i spoke with advised that the CCJ (craniocervical junction) is a SEPARATE MRI than a cervical spine MRI. Different coils are used. So I’m hoping to start with the CCJ and then do the cervical spine study at a later date if needed.

I’m so tired

 

[Mere72]

Hmm... I just checked Mechanical Basis, Jeff's website, and under the diagnosis tab he says: "The imaging will be of your cervical spine."
I feel like the more information I get the more confusing this gets.

@ehc918, yes it's exhausting... pace it out...