Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

[MartinK]

@godlovesatrier Hey, lot worse with cold virus or aphthae on almonds! Or runny nose...every other inflammation in head makes problems for me...and big PEM. It certainly points to something...but really hard to discuss with doctors (for example KDM - who see Lyme behing everything!)

Someone tried scintigrafia with galium or PET scan? These are probably the best methods to detect secret inflammation as far as I know. I'm considering paying it, but I'm saving now for MRi...

 

[godlovesatrier]

I don't think lyme can be the answer to all of our combined illnesses either. I'm kind of hoping my scan does show something, at least then i can get a proper diagnosis.

You mean the PET scans that were done in 2018 that proved inflamation in the blame existed in a sample of ME patients?

 

[MartinK]

@godlovesatrier Yeah, for sure... I think Lyme may be a trigger in a few percent of patients...EBV next some percent...IBS...intollerances...molds...many other things, I hope more doctors will have wider perspectives, otherwise nothing will move...

Sorry, I do not know about PET scans in 2018...that was a study? It occurred to me alone, because I am still trying to prove somehow that I have somewhere inflammation that is not well treated, even though I use a lot anti-inflammatories. Increasing the inflammation with a virus always cripples me. That is why I was so interested in your previous thoughts...

 

[godlovesatrier]

Here you go https://me-pedia.org/wiki/Brain_imaging

@MartinK

Yes I use natural anti inflamatories as I am asthmatic and can't take NSAID's - so natural is my only route. They do make a huge difference.

All the best to us both.

 

[jeff_w]

@jeff_w
Do I get this right?
Rotational Instability would show up in rotational CT.
Horizontal Instability would show up in upright mri with flex/ext.
Vertical Instability would only show up with Invasive Cervical Testing.

Yes.

How did you know that you had vertical instability if you didn’t have ICT?

I chose to have ICT. Dr. Bolognese told me that, based on my MRI, he was willing to operate without doing it, but he still offered to do it. I accepted his offer out of curiosity.

And do you know how the other neurosurgeons than Dr Bolognese diagnose vertical instability if they don’t do ICT?

Most of them require an in office visit, and they will ask detailed questions to try to determine if a patient has it. I've seen some of them miss vertical instability cases.

 

[Malea]

Thanks for clarifying @jeff_w !!

 

[JenB]

@jeff_w added table to CCI page: https://www.me-pedia.org/wiki/Craniocervical_instability#Imaging

Needs citations, of course

 

[godlovesatrier]

Can anyone tell me if the following tests would be enough to cover all outcomes for a CCI diagnosis? It's going to cost me £1300 in the UK so I need to be absolutely sure. It looks right to me, I just want to check:

An Upright open sitting MRI of the Craniocervical Junction including views Rotating the head to the Left and to the Right, which allows us to assess for any ligament damage/laxity of the ligamentous complex and any subluxation/dislocation of the Atlas.

An Upright open sitting MRI scan of the Cervical Spine including views in Flexion and Extension, which will show any Chiari malformation/tonsillar ectopia and also the stability/instability of the cervical Spine

Thanks,

 

[hezza]

@jeff_w added table to CCI page: https://www.me-pedia.org/wiki/Craniocervical_instability#Imaging

Needs citations, of course

@jeff_w @JenB @Hip Thanks guys so much for putting all this together! So does anyone know what exactly does Dr B see or look for on a supine MRI w/out flex/ext?

 

[Hip]

Can anyone tell me if the following tests would be enough to cover all outcomes for a CCI diagnosis?

It looks fine for Dr G's requirements, but normally you would contact his office first, and they would tell you what scan to get. If you want to send a scan to Dr B, he requires a supine MRI rather than upright. The latter you might be able to get on the NHS, if you ask your doctor nicely. That is what I am planning to do in the firt instance, get a supine MRI.

So does anyone know what exactly does Dr B see or look for on a supine MRI w/out flex/ext?

You can measure CXA, Grabb-Oakes, BAI and BDI on a supine MRI with the head in neutral. What you cannot measure is the translational BAI, which requires flexion and extension images.

 

[Malea]

If you want to send a scan to Dr B, he requires a supine MRI rather than upright.

As far as I know Dr B is requiring a lumbar mri now additionally. (But better mail him.)

 

[godlovesatrier]

So extra cost to send it to Dr G then? I'll have a look into it thanks Hip.

I have noticed recently that turning my head sideways to look more or less 75% backward behind me, causes quite severe dizziness which takes a little while to settle - I guess that's not normal? The UK Upright MRI hospital came back to say the following to me earlier:

Dependent on the findings in the scanned images Professor Smith will choose to make a number of measurements from the ones shown in the attached document describing Upright MRI of the Craniocervical Junction.

These might include:

Clivo-vertebral angle
Chamberlain’s line
Grabb-Oakes interval
Harris measurement – basion axial interval
Harris measurement – basion dental interval
Etc.,

I have also attached a sample report prepared by Professor Smith following a patient’s Cervical spine/CCJ scan.

Thanks,

 

[Hip]

@godlovesatrier, who is the Professor Smith who will make those measurements on your upright MRI scans? Seems like he is making the required measurements, in which case you may not need to send the scans to Dr G, who charges I think it's around 350 euro to make the measurements and give you a report.

I have noticed recently that turning my head sideways to look more or less 75% backward behind me, causes quite severe dizziness which takes a little while to settle - I guess that's not normal?

Dizziness is one of the cervical medullary syndrome symptoms that are caused by CCI, as is vertigo; that's all I know.

Dizziness = feeling faint or woozy.
Vertigo = feeling of spinning or whirling when you are not actually moving.

 

[JenB]

@godlovesatrier, who is the Professor Smith who will make those measurements on your upright MRI scans? Seems like he is making the required measurements, in which case you may not need to send the scans to Dr G, who charges I think it's around 350 euro to make the measurements and give you a report.





Dizziness is one of the cervical medullary syndrome symptoms that are caused by CCI, as is vertigo; that's all I know.

Dizziness = feeling faint or woozy.
Vertigo = feeling of spinning or whirling when you are not actually moving.

There’s have been some major discrepancies between what Prof. Smith and Dr. Gilete report. Prof. Smith’s interpretation is not a substitute for Dr. Gilete’s opinion.

 

[MEPatient345]

Consider this: How many people do we know -- with an ME diagnosis -- who have had a fusion surgery?

I know of 7: Karen, Jen, Starchild, Mattie, Julia, myself, and one unnamed. Out of these seven, five have had a complete resolution of ME symptoms.

Jeff, recently, the mother of the unnamed girl said that she is only 50 to 60% better,, so not fully recovered. She attributes the symptoms to both EDS and ME. Eds is an irreversible condition of course. I know the girls name and thought of inviting her on here but don’t want to pressure her.

 

[bread.]

Jeff, recently, the mother of the unnamed girl said that she is only 50 to 60% better,, so not fully recovered. She attributes the symptoms to both EDS and ME. Eds is an irreversible condition of course. I know the girls name and thought of inviting her on here but don’t want to pressure her.

@jeff_w @JenB

that is exactly what I am saying, there is a bias at hand so far, saying that mattie has „other“ structural issues without even mattie knowing for sure what is going on is at least a bit premature.

Still, saying all that, I am considering surgery, I am severe to very severe.

 

[MEPatient345]

I don’t know that there is a bias, @bread. The report on this girl was never terribly clear bc not directly from her. There is another ME patient in our FB group who says the surgery saved her life, but only reports a few actual improvements so far at a few months. So people can feel like it was a vital surgery, even before full remission or success. I think we just all have to see how things go for people over time. I too am thinking about surgery, but trying to be clear eyed about the possibility of remission.

 

[bread.]

I don’t know that there is a bias, @bread. The report on this girl was never terribly clear bc not directly from her. There is another ME patient in our FB group who says the surgery saved her life, but only reports a few actual improvements so far at a few months. So people can feel like it was a vital surgery, even before full remission or success. I think we just all have to see how things go for people over time. I too am thinking about surgery, but trying to be clear eyed about the possibility of remission.

thank you for clarifying, how severe are you?

 

[MEPatient345]

@bread. I am moderate / severe.. housebound, spend all day in bed. But can leave house for appointments and occasionally go for lunch. Am always in a zombie state so if I do anything it’s just ignoring symptoms as best I can. I have couple months long periods where I don’t leave house.

 

[bread.]

@bread. I am moderate / severe.. housebound, spend all day in bed. But can leave house for appointments and occasionally go for lunch. Am always in a zombie state so if I do anything it’s just ignoring symptoms as best I can. I have couple months long periods where I don’t leave house.

that is me 2 years ago, please stay within your limits buddy!

you have eds and/or cci diagnostic?