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

[Daffodil]

@Daffodil thanks for sharing those videos, I will def watch later! I wonder if it works for cranial settling - as in if the skull has sunk too low, I imagine it needs to be physically pulled back up into place, whereas people who have the other types of instability, their necks are in the right place some of the time, if you see what I mean?

B xxx

yes i see what you mean but i think cranial settling still falls under the CCI/AAI umbrella, doesnt it?

what would make the cranium settle? if it is damaged ligaments or disc herniations or whatever, maybe stem cells could still help? i dont know.

i am going to do some googling...

 

[bball222]

My question is whether a rotational MRI would be acceptable vs a rotational CT?

Hi! It should show the same instability, but I think it would be harder to read than a rotational ct scan. A ct scan has the ability to show a picture that contains both the c1 and the c2 on top of each other. Then, the person reviewing the scan can measure the angle between the two vertebrae while rotated. There are agreed upon measurements of what is normal by the top neurosurgeons. I would get whatever scan the person reviewing prefers, but, to me, there seems to be advantages to getting a ct scan along with flexion extension mri.

 

[Joly]

Hi! It should show the same instability, but I think it would be harder to read than a rotational ct scan. A ct scan has the ability to show a picture that contains both the c1 and the c2 on top of each other. Then, the person reviewing the scan can measure the angle between the two vertebrae while rotated. There are agreed upon measurements of what is normal by the top neurosurgeons. I would get whatever scan the person reviewing prefers, but, to me, there seems to be advantages to getting a ct scan along with flexion extension mri.

Hi @bball222 this is interesting to me, are the images and measurements you mention from the CT similar to these?

These are the rotational images taken during my upright MRI to look for AAI, first line looking forward/neutral, second rotated to the right, third rotated to the left. I am curious how different they appear from the CT scan and if it shows more of the instability in clearer detail...

 

[ehc918]

Now I’m considering the angles of imaging/image slices🤔. Scans can be from top to bottom vs side to side vs front to back...

 

[bball222]

Hi @bball222 this is interesting to me, are the images and measurements you mention from the CT similar to these?

View attachment 33390

These are the rotational images taken during my upright MRI to look for AAI, first line looking forward/neutral, second rotated to the right, third rotated to the left. I am curious how different they appear from the CT scan and if it shows more of the instability in clearer detail...

Don’t quote me on this because I’m not an expert, but it looks like the same thing you would get from a ct scan. I believe that is the same angle they measure on the ct scan, but am not 100% sure. Would be worth asking whoever your getting it reviewed by. I think the big thing is to make sure you get checked out for rotational instability at c1 c2. Because if you have only that, you’re upright mri will come back clear.

 

[leela]

Mods: Please move this post if it's not the right thread

Hi all, I've been away from the forums for a while, but I have recently learned of this Dx and have been pursuing it via Dr B's office. However, I have found that PTs in my town are refusing/confused by the requirement for 5 sessions of manual cranial traction, due to it being contraindicated for ligamental laxity. I exhausted myself getting to a second practice yesterday where she flat out refused to do it, despite performing her "screen" for LL and not finding any. So I crashed myself getting there and back for NO REASON. (So pissed off about that.)

Is anyone else encountering this attitude? If not, did your doctor write the referral without mentioning CCI/AAI?

 

[ehc918]

Good morning. Is there a resource for all recommended testing as per the individual doctors? There seems to be some addendums and additions in recent weeks and I am hoping to get some updated feedback.

Since there are no surgeons near me I will probably consult the only two who are open to remote consults, Dr. B and Dr. G. It seemed like they would both accept similar imaging but now require differing tests. But I’m also curious as to what Dr Henderson and Dr Patel recommend as well cuz I’ve not completely ruled out a road trip.

Thank you in advance.

 

[Waverunner]

I have a small question and would like to know if it may be connected to CCI (I had an upright MRI and there are clear indications for CCI) or if anyone here knows an explanation.

Whenever I drink coffee lately, my condition gets worse, I get some mild dyspnea, lightheadedness (like from reduced blood circulation to the brain) and nervousness.

The nervousness is probably related to the coffee/caffeine but where do the dyspnea nd lightheadedness come from. I have been drinking coffee over the last several years every second day and it never had any negative effects on me but now it does. Can this be related to CCI in any way? Can coffee constrict vessels, muscles or tendons in the neck?

 

[valentinelynx]

Mods: Please move this post if it's not the right thread

Hi all, I've been away from the forums for a while, but I have recently learned of this Dx and have been pursuing it via Dr B's office. However, I have found that PTs in my town are refusing/confused by the requirement for 5 sessions of manual cranial traction, due to it being contraindicated for ligamental laxity. I exhausted myself getting to a second practice yesterday where she flat out refused to do it, despite performing her "screen" for LL and not finding any. So I crashed myself getting there and back for NO REASON. (So pissed off about that.)

Is anyone else encountering this attitude? If not, did your doctor write the referral without mentioning CCI/AAI?

That sucks. My doctor said that some PTs will have this attitude and I did hear that from one. All I can suggest is having your doctor speak with the PT before your session to discuss the rationale behind the procedure and the PT's concerns. If the PT has specific directions from a physician he or she should be more comfortable.

 

[bombsh3ll]

However, I have found that PTs in my town are refusing/confused by the requirement for 5 sessions of manual cranial traction, due to it being contraindicated for ligamental laxity. I exhausted myself getting to a second practice yesterday where she flat out refused to do it, despite performing her "screen" for LL and not finding any. So I crashed myself getting there and back for NO REASON. (So pissed off about that.)
Is anyone else encountering this attitude? If not, did your doctor write the referral without mentioning CCI/AAI?

Manual cervical traction is actually contraindicated for all intents and purposes where there is ligamentous laxity. And even if you don't seem lax elsewhere, CCI does not typically occur in the absence of trauma unless there is some degree of laxity or other deformity such as rheumatoid. I would actually be very concerned about having anyone other than a specialist neurosurgeon pull up on my head. I were a PT, I would also not do it, as they risk litigation if the patient is harmed.

It is a difficult situation when it is required in order to get any further testing. I agree having the therapist speak directly to the surgeon is a good idea. I wouldn't recommend concealing why you want it, as this could lead to problems.

B xxx

 

[leela]

It is a difficult situation when it is required in order to get any further testing. I agree having the therapist speak directly to the surgeon is a good idea. I wouldn't recommend concealing why you want it, as this could lead to problems.

Thanks. I wasn't considering concealing it so much as putting "cranial settling" or something instead of CCI/AAI.
I love having my head gently pulled. It brings me relief, which is one reason I am pursuing this Dx in the first place.
I had trauma to my neck and head decades ago and have had neck issues and chronic headaches since before ME Dx. I'm secretly hoping I have been misdiagnosed with ME, dysautonomia etc, bc that might explain why everything I have thrown at this has not worked.

 

[bombsh3ll]

I wasn't considering concealing it so much as putting "cranial settling" or something instead of CCI/AAI.

I believe cranial settling is considered a form of CCI, it is also known as vertical instability. I have been diagnosed with this by Dr Gilete from MRIs and DMX. I haven't had manual traction, but have been offered a trial of halo brace in the hospital which I am still undecided on.

I'm secretly hoping I have been misdiagnosed with ME, dysautonomia etc, bc that might explain why everything I have thrown at this has not worked.

I am not so secretly hoping the same! I have yet to investigate venous outflow obctruction & intracranial pressure before moving towards surgery.

I love having my head gently pulled. It brings me relief

Then I think you could honestly tell the surgeon that yes, traction helps you, and skip having your neck yanked on by someone who doesn't understand CCI.

B xxx

 

[Hip]

I love having my head gently pulled. It brings me relief, which is one reason I am pursuing this Dx in the first place.

(I'm responding to your post in this thread, rather than in the thread you posted it in, in order not to take that thread off track).

You might find what Dr Bolognese says about feeling really good from head pulling of interest. See this 2018 video at 59:00.

Patients who feel worse when the head is pushed downwards, but feel great when the head is pull upwards, likely have the vertical instability form of CCI (cranial settling), according to Dr Bolognese.

 

[MartinK]

Hey all,
I think...because get good MRI can be a long wait and exploration by good doctor maybe even longer, maybe is good idea find some neck braces - ebay, advertising with orthopedic aids...or something else, buy and test what happen?
DIY home testing if the condition improves - sitting with, walking with.
Measure how much you go walk without neck brace and PEM, same thing with neck brace...

I'll try to do it this way! Now I waiting for MRI and consultation...and this is for 2 months :-/

 

[valentinelynx]

Hey all,
I think...because get good MRI can be a long wait and exploration by good doctor maybe even longer, maybe is good idea find some neck braces - ebay, advertising with orthopedic aids...or something else, buy and test what happen?
DIY home testing if the condition improves - sitting with, walking with.
Measure how much you go walk without neck brace and PEM, same thing with neck brace...

I'll try to do it this way! Now I waiting for MRI and consultation...and this is for 2 months :-/

Perhaps I'm wrong, but from what I've read about this, if you have CCI, I doubt that you would get relief from wearing a neck brace. If you have CCI, what you need is cranial traction: pulling the head up so that your brainstem is no longer compressed. Neck braces don't pull your head up; they prevent you from flexing or extending your neck. That may bring some relief if you have tight neck muscles, degenerative disk disease or neuroforaminal stenosis, but not from CCI. Traction should be done with care: ideally, by a trained physical therapist or physician. If you choose to do it at home, please be very careful.

 

[MartinK]

Hey @valentinelynx , thanks for some opinion! ;-)
I come primarily from MEchanical basis - from Jeffs story, when he had improovement, when he tried solid neck brace.
I know it's not a solution, but I not know better DIY test, who can show if something is wrong with the neck.
I have a scheuermann - this is, why its good to test the musculoskeletal system in some ways I think.

muscle pain, back pain, inflammation, PEMs and lot of exhaustion after some activity - It may make sense when treatments for infections, viruses and immune system have not worked.

 

[valentinelynx]

from Jeffs story, when he had improovement, when he tried solid neck brace.

Well, sure, if you do have improvement while using the neck brace that could tell you something. But, I don't know that absence of benefit from a neck brace alone is sufficient to rule out CCI. The brace my physician recommended that I get was this one: Aspen Vista Multi-post Collar. It's one size fits all. Helps to have an experienced PT or physician fit it once you get it. I found a number of them at good prices on EBay. I was told to only wear it for brief periods. Probably too much wear will weaken your neck muscles.

 

[Inara]

Has someone here made experiences with Dexamethasone and felt relief? If so, what became better? Would CCI (or other structural changes of the cervical spine) cause inflammation and swelling of the affected (compressed?) structures? (Short-time) Dexamethasone (or Prednisolone) seems to be also used to improve inflammation and swelling; e.g. by neurosurgeons, or in MS, or in HACE. I wonder if a "light type of CCI" might answer to Dexamethasone. The cause wouldn't be removed, but the consequences would be delt with. I think the inflammation and swelling, IF present, would return now and then, and if the problems are caused by instability (due to weak connective tissue e.g.), I would expect to see it returning and maybe getting worse. (Until, maybe, Dexamethasone wouldn't help anymore?)

Also, have those with a CCI diagnosis observed a progressive worsening of their state? That's what I would expect.

 

[Inara]

Is this the normal price? Thought it would be more expensive.

My information is ca. 700€ for every part of the spine, where the cervical junction counts as head and the cervical spine is extra, i.e. ca. 1400€ for an MRI that Dr. Gilete would need for evaluation. (It's the same company with several locations in Europe.)

 

[Mere72]

Not suggesting that you do have CCI of course; just trying to come up with some theories that might explain these sudden remissions in CCI terms.

(Moving this from "How has the CCI news affected you" thread, seems more applicable here.)

@Hip you seem very knowledgeable so I'd like to direct another question to you, or anyone else who can chime in. I have a similar question that keeps coming up in my mind. I have long-term ME that leaves me bed bound at times, housebound at times (mostly), and other times I feel better and can do more. The times when I feel better, I can't find any clear cause and effect as to why. I have wondered how CCI might fit into this scenario... the waxing and waning of symptoms, the changes in type and severity of symptoms. I describe myself as a leaky bucket- as soon as one set of symptoms improves, another worsens. And on rare occasions, the stars align and I have periods when I'm better (though still not functional, very careful about activity). I have just come off of 2 years of mostly housebound, and in the last month or so I'm more functional, with less PEM (I don't hold my breath, though...). I don't go into remission, as @Moof does, just have periods with better function and less symptom severity.

I am very interested in pursuing CCI/ AAI b/c I have always suspected structural issues, but my question is, how would this changing of symptoms apply to CCI? I have wondered if perhaps at certain times your body is better compensating for the instability than others? And secondly, if I were to get MRI scans done in a "better period", would they show CCI/ AAI/ other issues? It is during these times that I would be more capable of having the tests done, but I also wonder if it would be the best time to test. I have wondered if Jeff's and Jen's MRI's would have reflected CCI/ AAI if they had not gotten to the severe state they were in by the time they had them done.

Thank you for any input!