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

[Hip]

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?

Perhaps the answer to Moof's question posted here might explain why you get periods of feeling better and periods of feeling worse: short answer: some autoimmune diseases can cause ligament swelling (pannus) which leads to CCI. Since autoimmunity can be relapsing-remitting, then I am guessing so might CCI.

And secondly, if I were to get MRI scans done in a "better period", would they show CCI/ AAI/ other issues?

I don't really know, but if a CCI were autoimmune in nature, then I guess the ligament swelling and thus the CCI conceivably might be less during better periods.

 

[Marelica]

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

@Hip 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.
..... how would this changing of symptoms apply to CCI? ....

I have the same question in my mind for a week but I did not know how to formulate it good enough in English.
The question is whether remissions are possible in structural changes (CCI and AI) or in mechanical damage or
the disease remains stably bad and with time it gets worse.

That knowledge, if we can understand, will enable us who don't have the upright MRI in own country
to make it easier to decide if we go on the road trip to rule out CCI / AI or stay home (my first upright MRI is two countries away from me and five hours by car).

If the post is off-topic, I plead the moderator to delete it.

 

[valentinelynx]

The question is whether remissions are possible in structural changes (CCI and AI) or in mechanical damage

I think this concept of brainstem compression as cause of ME/CFS is too new to answer such questions. To most of us it's astonishing that there is such a link, and that people with an illness onset that was almost certainly infectious could turn out to have a structural problem that, if fixed surgically, relieves all symptoms! It defies logic, although the theories regarding matrix metalloproteinases and collagen degradation are good hypotheses towards solving the paradox (requires testing!). Many people with ME/CFS are thinking they could not possibly be in the CCI cohort because they have, or don't have, some symptom, or their symptoms fluctuate or they don't have EDS. Yet, from what I'm reading it appears that the only way to rule out CCI or related issues in patients with ME/CFS is proper imaging and diagnostic testing (e.g. traction trials). Look through the stories of the folks who have had the diagnosis and surgery with good result and I think you'll see that they, too suffered from all of the symptoms that others are thinking indicate they probably don't have this kind of problem.

What I'm trying to say is, just because no one yet knows how CCI could remit and relapse, or arise from a viral infection, or cause MCAS or SIBO, doesn't mean that it doesn't happen. In understanding medicine, humility is the best approach, as our knowledge is still rudimentary, despite the arrogance of too many physicans!

@pattismith posted the other day a publication showing a link between spinal cord injury and decreased expression of NK cell genes and increased expression of genes associated with inflammation, published about a year ago. So there is information out there that supports the connection between CCI and chronic illness. The lesson is that we don't know enough about our illness or illnesses to get too attached to any one theory of cause. When we find a theory that reliably predicts the behavior of the illness and effective treatment, then we can say we know what's going on, but not before.

 

[Mere72]

@valentinelynx Thanks for your thoughts. I'm not discounting the theory in my questioning about symptoms remitting. Although I do think we should be able to explore both sides of this new concept. Part of the reason for my asking is b/c my dr might bring up these questions when I ask for an MRI, so I am gathering information.

The root of my question right now is that I seem to be, after 2 years of mostly house bound, moving into a phase of less symptom severity. I've been here before, and I know the bad will be back, regardless of how well I manage it. So I don't know if I should do the MRI scans when my symptoms are less severe (I'm concerned that structural issues might not show, and that will be my one shot at assessing them, b/c it's hard to get a dr to give you an MRI order), or wait until they are worse again. Being worse of course makes the testing harder on me, but I also want an accurate picture. It seems logical to think that if structural issues are there, they wouldn't change, but so far this illness has defied all logic so I am posing the question.

 

[Joly]

@Mere72 I am fairly sure that if you have something structural it shouldn't be directly affected by how severe your symptoms are at the time of testing, but I can say that waiting until you are in a crash or having a flare-up of severe symptoms will make having an MRI much more difficult and uncomfortable.

 

[Marelica]

I think this concept of brainstem compression as cause of ME/CFS is too new to answer such questions. To most of us it's astonishing that there is such a link, and that people with an illness onset that was almost certainly infectious could turn out to have a structural problem that, if fixed surgically, relieves all symptoms! It defies logic, although the theories regarding matrix metalloproteinases and collagen degradation are good hypotheses towards solving the paradox (requires testing!). Many people with ME/CFS are thinking they could not possibly be in the CCI cohort because they have, or don't have, some symptom, or their symptoms fluctuate or they don't have EDS....

Dear @valentinelynx, thank you very much for taking the time and trying to answer my question I really appreciate.

 

[Revel]

Another CCI surgery story in the UK media. Once again, the NHS refused to pay and the patient had to self-fund surgery at Mayo:

https://www.dailymail.co.uk/health/...ng-months-given-just-weeks-live.html#comments

 

[Mary]

POST NOS. 1646, 1648, 1650, 1651, 1652 AND 1653 HAVE BEEN MOVED TO THIS THREAD FROM TRACKING CCI/AAI MRI & TREATMENT OUTCOMES BECAUSE THEY WERE OFF-TOPIC.

 

[Joly]

Mere72 said: Has anyone with "mild" or "mild-moderate" ME/ CFS tested positive for CCI, AAI et al?

@Mere72 Moved from Tracking Outcomes because I think the topic is more general, I am 'mild-moderate' (currently somewhere between the two having fluctuated between all 3 over 16 years) and have AAI, waiting on my full report from Dr Gilete.

 

[Lesm]

Mere72 said: Has anyone with "mild" or "mild-moderate" ME/ CFS tested positive for CCI, AAI et al?

I would consider myself mild and I was accepted to Dr. B's practice based on my MRI and response to traction. (Appointment not until September, so won't have official diagnosis until then.)

 

[Raemacpherson]

That knowledge, if we can understand, will enable us who don't have the upright MRI in own country
to make it easier to decide if we go on the road trip to rule out CCI / AI or stay home (my first upright MRI is two countries away from me and five hours by car).

Dr. Bolognese office sent me a generic list of things they require potential patients to complete, including an MRI. However, the person in the office I talked to on the phone specifically said that Dr. B. does not require an upright MRI, at least initially, to begin the process. This is contradictory to Jeff Wood's report and confusing. I have attached the email herein.

 

[Mere72]

I would consider myself mild and I was accepted to Dr. B's practice based on my MRI and response to traction. (Appointment not until September, so won't have official diagnosis until then.)

Would you mind telling me which of your symptoms improved with traction?

 

[Hip]

Dr. Bolognese office sent me a generic list of things they require potential patients to complete, including an MRI.

At the end of those patient instructions from Dr Bolognese, it says:

We will review the information.
You will be then informed if your case is:

* REVIEWED & APPROVED
* Or REVIEWED & REJECTED

In case of approval, our Team will get in touch with you to give you an appointment date, for an office consultation, or for a videoconference.

In case of rejection, no diagnostic impressions will be given, because diagnoses cannot be given outside of a formalized Patient/Doctor consultation.

Does this mean that Dr B is no longer providing a remote diagnosis based on the MRI patients send in and their symptoms? Because I heard that previously he would often email patients who sent in their MRI with a one-liner saying "you do not have CCI" when those patients did not fall within his diagnostic criteria.

 

[toyfoof]

Does this mean that Dr B is no longer providing a remote diagnosis based on the MRI patients send in and their symptoms? Because I heard that previously he would often email patients who sent in their MRI with a one-liner saying "you do not have CCI" when those patients did not fall within his diagnostic criteria.

This is the email I received from Dr B, back in January:

Your case has been reviewed and, unfortunately it does not fall within the defined parameters of our practice.

Therefore, you are not going to receive an appointment date for our center.

We wish you good luck in finding a specialist who can help you with your pathology.

We will return your cd's to you today.

Note that I had sent a 3T supine cervical spine MRI, no flexion, extension, or rotation.

I know that I have stenosis and some other issues, so my next steps are going to be to get an upright MRI with all the views and send to Gilete and/or Henderson for second opinion. I'm actually kind of glad it worked out this way, since Gilete and Henderson also do stenosis and other spinal/cervical issues and I want to make sure all of my pathologies are addressed.

 

[toyfoof]

On another note, I've also been getting traction from my PT and, while it feels nice, it doesn't give me the immediate feelings of well-being that I've heard those with CCI get. So I was feeling pretty good about not having CCI.

Until this week, when I was in my physio yoga class, and the instructor did traction while we were in corpse pose at the end. She pulled harder than my PT ever did (this yoga instructor is also a PT and incorporates body work and myofascial release into the practice) and all of a sudden I felt this wonderful lightness, like suddenly my brain was no longer smashed into my skull, but there was some room to breathe in there. It felt like light and air and weightlessness.

I booked an appointment for a one-on-one bodywork session and had that yesterday, and told her about that sensation. She took one look at me and told me I am hypermobile, and she believes my neck problems have originated in my lower body and because I'm hypermobile there (my knees are hyper-extended), the rest of my body has been compensating my whole life, culminating in my neck ligaments being in this strange push-pull where they try to hold my head correctly and are forced into weird positions to make up for my body being out of whack. My jaw was a few millimeters to the left, etc.

So she thinks CCI is a possibility, and even if I don't have that, the stenosis is likely caused by all the hypermobility making my spine create new bone to compensate for weak muscles and ligaments. She did traction on me again and I felt it again. I think I might have some cranial hypertension going on.

All of this makes me even more determined to get a second opinion and possibly pursue surgery for the stenosis, which will hopefully open up my spinal canal and get some of that lightness back into my head!

 

[mwmaxwell]

At the end of those patient instructions from Dr Bolognese, it says:


Does this mean that Dr B is no longer providing a remote diagnosis based on the MRI patients send in and their symptoms? Because I heard that previously he would often email patients who sent in their MRI with a one-liner saying "you do not have CCI" when those patients did not fall within his diagnostic criteria.

I received an email saying that I did not meet the parameters of his practice. When I asked “does this mean I do not have any pathology?” the response was “your pathology does not meet our office parameters.” I plan on getting a second opinion.

 

[Hip]

I received an email saying that I did not meet the parameters of his practice. When I asked “does this mean I do not have any pathology?” the response was “your pathology does not meet our office parameters.” I plan on getting a second opinion.

Sounds like what he might mean is something like: "You are not diagnosed positive by my office's criteria, but that does not necessarily mean you are diagnosed negative, as other neurosurgeons may use slightly different criteria".

I just started a thread here on the differences between Dr B and Dr G's diagnoses.

The interesting thing is that of the 6 ME/CFS patients who posted their full report from Dr Gilete on this thread, all 6 had a pathological translation BAI.

This translation BAI measurement can only be measured if you supplied scans with your head in flexion and extension positions (imaging which Dr B usually does not look at). These 6 did not have any other measurement pathologies, apart from 2 of them having a pathological CXA.

So it seems the translation BAI may be an important and common pathology in ME/CFS. The translation BAI measures a horizontal instability CCI which is caused by lax ligaments. Which makes me think that lax ligaments might be an issue in ME/CFS — perhaps causes by chronic viral infections weakening the ligaments.

Until this week, when I was in my physio yoga class, and the instructor did traction while we were in corpse pose at the end. She pulled harder than my PT ever did (this yoga instructor is also a PT and incorporates body work and myofascial release into the practice) and all of a sudden I felt this wonderful lightness, like suddenly my brain was no longer smashed into my skull, but there was some room to breathe in there. It felt like light and air and weightlessness.

Did you explain this to Dr B? As you know, in his patient instructions, he asks people to get manual traction from a PT and then report back to him if their top 3 main symptoms are changed by traction.

 

[Inara]

some autoimmune diseases can cause ligament swelling (pannus) which leads to CCI. Since

@Hip, do you have more info about that? Sounds interesting.

 

[Joly]

@Hip, do you have more info about that? Sounds interesting.

I've read that it's very common in Rheumatoid Arthritis.

 

[Mere72]

@Hip, do you have more info about that? Sounds interesting.

Hip gave more info on this in a response (and embedded link) to my post at the top of this page (on Sunday, 6/30), might give you more info.