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

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hmm.

So it would appear I have been diagnosed with CCI..... and then some.
Just got my report from Dr G in Spain.

I had kinda hoped that I had tethered cord, and that that was all. Yes I have arthritis in my neck, but most people my age probably would have the same finidings should they get scanned.

Turns out he didnt mentionTC at all. Nor the "minimal Chiari type I" that was in the report of one of my scans.

Not entirely sure what to do with this information now.
Guess I will sit and ruminate a bit.... google some terminology from the report.... and then discuss with my Gp the recommended testing DrG still wants me to do. Which, like @Daffodil is a motion scan and a venogram.
 

Daffodil

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My understanding is that chiropracters are not doctors and their entire "science" is a bit dodgy but each to their own.

https://sciencebasedmedicine.org/chiropractic-a-brief-overview-part-i/
i know that one should not necessarily let them manipulate your body but i have found that, at times, they do add some information that is different from MD's and this information can, at times, be helpful.

a chiro was the only one who would listen to me re: the CCI/AAI and he had a DMX machine. even though he convinced me to try the atlas orthogonal treatment, it wasnt entirely useless. i felt that after one of the sessions, there was a definite temporary change for the better. this further encouraged me to pursue the CCI/AAI issue.

perhaps there are a few chiros that stand out from the rest... i dont know. but after decades of this disease, i cant really recommend MD's now can i lol

you know...naturopaths and integrative medicine docs were talking about the gut's connection to health for many years before the medical community decided it was worth looking into
 

ScottTriGuy

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naturopaths and integrative medicine docs were talking about the gut's connection to health for many years before the medical community decided it was worth looking into
Good point, I'd not realized that.

Allo medicine has become too narrow and medical culture to oppressive, as trying to get an off-label prescription is quite hard to get (in Canada at least).
 
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@StarChild56 Thank you for your thorough response! This was really helpful. And thanks for paying it forward... I believe other patients are the best resource we have. I appreciate your help, especially being post-op!
 
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Hi @SamB the exact scans I was told to get for Dr G were: "Upright flexion, extension and rotation MRI scan of the craniocervical junction and cervical spine".
I couldn't find any description of cervical scans they offer on that website so maybe double check they do this specifically, and then I would email Amy, Dr Gilete's patient liason, to check if they'll accept scans from this facility.
 
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@jeff_w I saw where you posted this on Twitter:
https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-018-1397-7

For clarity, how does this correlate with CCI/ AAI? These patients had surgery for stenosis at C5-6. Is this an additional area we should be testing? Or is it something that would also be picked up with the upright MRI when testing for CCI/ AAI?

Of particular interest was this quote from the article:

"Of interest, all three patients in our series had potentially pathological clivo-axial angles. The decision was made to operate on the bulging cervical discs as a first step, as it was the least invasive surgical intervention. After 32–70 months of follow-up there has been no need for further surgery. We are unsure whether the combined presence of abnormal clivo-axial angle and cervical canal stenosis poses a greater risk of neurological symptoms, but this possibility should be kept in mind in future investigations, especially in light of the observation than an abnormal clivo-axial angle is capable of causing deformative stress within the spinal cord [20]."

Do you interpret this as suggesting that perhaps addressing either the CCI or the lower discs could improve the neurological symptoms of ME/ CFS? Or that the CCI might be the root of the problem, causing issues in lower discs?

I have read so much information recently my head is spinning. Thank you for any insight you can provide.
 

Daffodil

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@Mere72 wow. i didnt know this important tidbit of info. i wish i had, i would have asked dr. G about it. Since dr. G recommended entire neck fusion for me (tentatively), the lower vertebrae must be just as important - maybe more??
 

valentinelynx

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venogram involves dye and fluoroscopy - which i think is a motion x-ray similar to a DMX?
There are 3 approaches to doing a venogram of the brain (I found this here):

1. CT Venogram: just a CT of the brain after injection of contrast into a vein, to outline the veins of the brain (no special catheters needed: just an IV). The radiology tech has to wait until the right time to take the images in order to capture the passage of the IV contrast through the veins in the head and brain.

2. MR venography: An MRI is used to image the veins of the head. There are 3 types of MR venography. Two of them use physics properties (no contrast) to image the passage of blood in the brain (way to technical for me to explain, let alone understand!) and the third is like a CT venogram: contrast is used (MRI contrast is different from CT/X-ray contrast) to outline the veins.

3. Digital subtraction angiography (DSA): This is the invasive procedure that requires threading a catheter into the veins of the head via a vein in the leg. Using a fluoroscope, which is simply an X-ray machine that can be rotated to the angle desired, an image is collected before any contrast is injected. Then the contrast is injected and a series of pictures are taken. The first image, without the contrast, is subtracted by a computer from all the contrast images, giving an image of the blood vessels that have filled with contrast.
DSA is very common in interventional pain clinics (not involving catheters from the leg to the head—just injections of contrast through the needle before injecting medicine) , as it's the best (safest) way to see where the contrast goes, the most reliable way of knowing your needle isn't in a blood vessel before injecting the treatment medicine. It is probably available in Canada for both interventional pain and neurosurgery. DSA for brain venograms is used before treatment of aneurysms and thromboses. It's been around for decades.

What I have no clue about is what Dr. Gilete is looking for and therefore which of the above options is relevant.
 

Daffodil

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@valentinelynx wow thank you!

unfortunately, it looks like he wants #3. there is NO way anyone will do that for me here. oh man. another headache.

this is what they wrote

-MRI with contrast (gadolinium enhanced) angio/venogram of the head and neck, study of intracranial arteries, veins, and sinuses down to the subaortic trunks. Investigate for possible compression of the jugular veins.
 

Daffodil

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hi all. if dr. B wants you to do cervical traction, does that mean he might see something significant already?

at this point, after sending all my records to people and consulting with dr. G, I wonder if there is any use of continuing testing since I cannot have surgery.

I am trying stem cells at the end of July. I do have time to do traction before then and see how I feel....not sure what to do. Can this kind of cervical traction make one worse? That thought scares me. Also, how do you find a good PT who wont mess up your neck?

thanks!
so
 

JasonUT

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Hello All,

I have been suffering from CFS/ME and POTS for 5 years. I have had NO response to the typical medications prescribed for CFS/ME and POTS. Dietary and lifestyle changes have somewhat helped me marginally manage my illness. Like may others, this has caused me to think spinal mechanical issues may be at the root of my illness.

Specifically:
  1. CSF Leak - Front runner at this point. All my symptoms are orthistatic and relieved within 30 minutes of lying completely flat. Plus I have a lot of trigeminal nerve and ear/hearing problems. It appears these types of symptoms are commonly linked to CSF Leak. I'm already working with Duke, UTSW, and Cedar-Sinai on a proper CSF Leak work-up.
  2. Cervical spinal stenosis - Second place. I have a 2016 cervical MRI which shows multiple problems. See report details below.
  3. CCI - It's on the table, but I have my doubts. I don't think I have any hypermobility symptoms. Perhaps, the opposite. My PT tells me my back is very stiff and guarded. Also, my symptoms don't seem to be exacerbated by turning or rotating my neck.
  4. Tethered cord - On the table, but I haven't done any research.
  5. Chiari malformation - Doubtful. I have two 3T brain MRI's which show very normal Chiari formation.
Can anyone help me with the following questions?
  1. Cervical spinal stenosis: Can someone point me to a good article or write up that summarizes cervical spinal stenosis? i.e. symptoms, imaging, diagnosis, treatment, etc.
  2. Tethered Cord: Can someone point me to a good article or write up that summarizes tethered cord? i.e. symptoms, imaging, diagnosis, treatment, etc.
  3. Chiari malformation: Does two normal brian MRI's with and without contrast rule-out this condition? Can someone point me to a good article or write up that summarizes chiari malformation? i.e. symptoms, imaging, diagnosis, treatment, etc.
  4. Are there other spinal mechanical issues that I should consider?
Results from 2016 T1.5 Cervical Spine MRI with and without contrast:
Morphology: The vertebral bodies are well maintained and show normal signal characteristics.

Alignment: Cervical spinal alignment is normal.

Cord: The spinal cord shows normal contour and signal content throughout its length. There is no abnormal enhancement within the spinal canal.

Craniocervical Junction: Cerebellar tonsils are normally positioned. The visualized portions of the posterior fossa are unremarkable. The regional osseous anatomy is normal.

C2-C3: Unremarkable.

C3-C4: Unremarkable.

C4-C5: Mild osteophytic ridging and uncovertebral spurring. The central canal and bilateral neural foramina are mildly narrowed.

C5-C6: Left paramedian disc osteophyte and bilateral uncovertebral spurring left worse than right. The central canal is mildly narrowed. The left neural foramen is moderately narrowed. The right neural foramen is mildly narrowed.

C6-C7: Right paracentral disc osteophyte. Bilateral uncovertebral arthropathy.The central canal and bilateral neural foramina are mildly narrowed.

C7-T1: There is a broad-based posterior disc osteophyte with bilateral uncovertebral spurring. The central canal is mildly narrowed. The left neural foramen is mildly narrowed. The right neural foramen is patent.

Soft tissues: The paraspinous soft tissues are normal.

IMPRESSION: Multilevel spondylosis as described above. No evidence of focal cord lesion.
 
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Daffodil

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I seem to remember someone who said they were rejected as a patient by dr. B....I cannot remember their name...if they see this, plz indicate? some people in another group want to know if some people are rejected outright without dr. B asking them to do traction first and report back...

thank you!
 

valentinelynx

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there is NO way anyone will do that for me here. oh man. another headache.

this is what they wrote

-MRI with contrast (gadolinium enhanced) angio/venogram of the head and neck, study of intracranial arteries, veins, and sinuses down to the subaortic trunks. Investigate for possible compression of the jugular veins.
Do you mean you can’t find someone to order an MRI veno/angiogram? It seems to me that would be #2—no special catheter needed—just an MRI with gadolinium contrast. But I could be mistaken.

It’s hard enough in the US to get approval for these studies from insurance I was recently denied a basic lumbar MRI that my pain doc wanted to look for arachnoiditis/ CSF leak. The insurance acted as if it was for back pain and I had to do PT for it before an MRI. :rolleyes: So I imagine in Canada it’s similar: that you need to meet certain criteria for the study? Or is it enough if a Canadian doctor orders it?