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

[Joly]

Hi @chger An MRI of the skull or brain alone is not enough, the most important is the MRI of the cervical spine with flexion and extension. This should show enough of the spine and craniocervical junction to make a diagnosis of CCI, cranial settling, instability, Chiari etc.
Does this MRI include rotational views? If not you may need to get a rotational CT scan done to rule out AAI.

 

[HansG]

Hi all,

Currently i am trying to rule out CCI Diagnosis as well.
Here in Germany There are different sites that offer Upright MRI (0.6 T). After a Phone Call today There are These options:
1. MRI of the Skull (600 €). This is done in neutral Position only
2. MRI of the cervical Spine (700 €). This includes neutral + flexion + Extension

Unfortunately it is Not possible combining both in One MRI.
As far i understand the upright MRI of the cervical Spine with flexion and Extension is the most important.
But is There a need for Skull MRI additionally?
Anything else to consider?

My plan is sending these MRIs to Dr. Gilete for evaluation

Thanks !!

Hi @chger,

I think the imaging of the scull is more important for diagnosing AAI and maybe others.

The meassurments re. CCI, Brainstem Compression, Chiari ect. (https://forums.phoenixrising.me/thr...-diagnosis-supine-mris-vs-upright-mris.76817/ ) are done using the Cervical Spine Imaging, in neutral, flexion and extension.

I was in Frankfurt for imaging and paid in sum the same amount as you described:

1. MRI of scull was done in neutral and rotation
2. MRI of cervical spine was done in neutral, flexion, extension and tilting to left and right (I thin tilting is not needed by Dr. Gilete)

I was wondering, whether Dr. Gilete needs the rotation view in imaging 2 (spine) instead of 1 (skull). Waiting for his report.

Make sure, that your position is in full flexion and extension. I missed that. I had to wear some kind of magnetic coil and was not able to do so. Now I regret not mentioned it at the right time.

And ask your facility, whether they are familiar with Dr. Gilete. I guess you will not be the first one.

 

[Murph]

Dr Michael van Elzakker and Nancy Klimas talk about Jen Brea, CCI and ME/CFS at the 2 minute mark of this video.

The video may not open here but if you click on "Watch this video on YouTube" it will run.

 

[JenB]

Interesting.

I strongly disagree with the hammer/nail part, at least when it comes to my surgeon’s practice. It’s a shame because I HAVE had a hammer/nail experience with many doctors (they run a bunch of tests and make the same recommendations, regardless). My presurgical testing/diagnosis was quite the opposite experience, as I’ve written.

Invest in ME was also only a week or two after I had “come out” about my improvements. I get not wanting to cause a stampede of false hope (I worry about this, too) but I also sincerely hope some researchers and clinicians in our community will learn about and look more deeply into this.

 

[Rlman]

@JenB do you know if the brain imaging you had following the development of the breathing issues showed any signs of basilar invagination or cranial settling such as the odontoid projecting past above the chamberlain line by over 6mm (other source 3mm) or McGregor line over over 5mm or if their was projection past the McRae line? (as mentioned in this article https://radiopaedia.org/articles/basilar-invagination)

 

[JenB]

@JenB do you know if the brain imaging you had following the development of the breathing issues showed any signs of basilar invagination or cranial settling such as the odontoid projecting past above the chamberlain line by over 6mm (other source 3mm) or McGregor line over over 5mm or if their was projection past the McRae line? (as mentioned in this article https://radiopaedia.org/articles/basilar-invagination)

Sorry, I don't know.

 

[brando]

Just thought I’d share this—Dr. House diagnosing Chiari via traction. If you have an Amazon Prime subscription, go to season 6, episode 20 (i think) ~ 36 minutes. It funny to watch because in some ways, it’s pretty accurate and in others...

View attachment 33820

They even cast Dr B!

 

[JenB]

They even cast Dr B!

Wait, what??

Or you’re saying Dr. B is like Dr. House?

 

[brando]

Wait, what??

Or you’re saying Dr. B is like Dr. House?

Sorry, the wee guy on the left looks like Dr B! 😂

 

[hezza]

@jeff_w @JenB @Hip @StarChild56

Not sure where to post this but after Dr B told me to try neck traction & I got such relief from it my husband has been continuing it at home as the PT showed him. It helps so much but it’s temporary, the following day symptoms gradually build & I need another session.

I’m awaiting my videoconference w Dr B on Sept 23. Last week I submitted my PT journal to his office. Today they contacted me to say stop traction, I tried to question them but she just kept repeating to stop.... Is it possible this is only good for diagnostic purposes & could cause further instability if cont’d? Does anyone know? It’s really hard to know something brings relief but that it’s off limits...

I’m fortunate to have a consult coming up at least, but I know there are others out there “winging it” & if this could make us worse we need to know it.

 

[JenB]

@jeff_w @JenB @Hip @StarChild56

Not sure where to post this but after Dr B told me to try neck traction & I got such relief from it my husband has been continuing it at home as the PT showed him. It helps so much but it’s temporary, the following day symptoms gradually build & I need another session.

I’m awaiting my videoconference w Dr B on Sept 23. Last week I submitted my PT journal to his office. Today they contacted me to say stop traction, I tried to question them but she just kept repeating to stop.... Is it possible this is only good for diagnostic purposes & could cause further instability if cont’d? Does anyone know? It’s really hard to know something brings relief but that it’s off limits...

I’m fortunate to have a consult coming up at least, but I know there are others out there “winging it” & if this could make us worse we need to know it.

Yes, it can. I would also agree with, “Stop!” if you have what you need, diagnostically.

 

[Remi]

@hezza Chiropractors are known to kill or paralyse people with the wrong movements, so it will be dangerous. I would have great difficulty stopping something that brings relief like that, our disease is really cruel. I hope you can stop, at least you know it works, which is huge. 🌻

 

[StarChild56]

I’m awaiting my videoconference w Dr B on Sept 23. Last week I submitted my PT journal to his office. Today they contacted me to say stop traction, I tried to question them but she just kept repeating to stop.... Is it possible this is only good for diagnostic purposes & could cause further instability if cont’d? Does anyone know? It’s really hard to know something brings relief but that it’s off limits...

I apologize did not realize this was also addressed to me but I concur with Jen, please stop if Dr. B's office instructed you to stop.

 

[bansealgair]

Forgive me for posting here again but I am really struggling and need some advice.

I have recently had MRI findings of atlantoaxial instability. I have just been told Dr Gilete has a huge backlog of patients and I will not receive my report from him for two months.

I am struggling to manage my symptoms and am trying to stay as active as possible. I have been trying to maintain a yoga practice but when doing so I am experiencing disrupted sleep pattern with bizarre symptoms and difficulties breathing. I have had two TIA type attacks in the last week and I am unsure of what to do. I want to stay in as good shape as possible but I am worried certain activities may be making it worse.

Does anyone know what is good to avoid with this condition?

My GP rejects my diagnosis and I have no support from the NHS.

 

[JenB]

@bansealgair this might help: https://www.facebook.com/groups/2235327493461719/?ref=share

 

[Scotty81]

Hi All,

I'm new to this thread, but just started reading it recently. I'm the parent of a 20-something who has been diagnosed with ME/CFS, POTS, and MCAD. Although she doesn't have EDS, she is on the hypermobile spectrum. Practically all prior treatments to date have not helped her. Due to the articles that @JenB and @jeff_w originally published, I became aware that CCI might be contributing to her condition.

Her PCP agreed to write the order for the appropriate upright MRI's. But, when he found that those tests needed prior authorization, he said he'd have to 1) examine my daughter for this condition, and 2) have a consult with her to even have a chance of getting prior authorization from insurance. Without these, he seriously doubted that a peer to peer consult for the prior authorization would get approved. My concern is that even if we met conditions 1) and 2), we still may have a problem with insurance prior authorization.

For one, I understand that CCI is not diagnosed upon physical examination. So, I'm not sure what a physical exam would prove. And two, even if he believes that CCI could be an issue, I doubt the peer doctor at the other end of the prior authorization would be so inclined to approve the imaging.

So, my question is whether others have faced insurance issues with imaging, and what they did to overcome them. Is there some study or paper that I should bring to my daughter's doctor's office for reinforcements? I'm sure Drs. Bolognese and Henderson have written papers on the subject, but I'd rather ask what others' experience has been vs. just starting an insurance battle from scratch.

Many thanks in advance for advice.

 

[Jessrose21]

My dr submitted a prior auth request for a 3D CT scan with rotation, and used the ICD 10 code for chronic fatigue. Of course, it was rejected by my insurance. (I could have told him they would if I'd known that was the code he used.) Anyway, he's willing to resubmit, and wants to know which code to use. I think codes for migraines and neck pain, both of which I suffer, would be good. I have no idea what actual codes would be best. Anyone have an opinion on this?

Thanks,
Jessica

@jeff_w
@JenB

 

[valentinelynx]

@Jessrose21 — The specific ICD-10 code for atlanto-axial instability (I think this is suspected diagnosis most appropriate for 3D CT with rotation) is M53.2X1. Some other supporting codes (things you would be expected to have with CCI/AAI) are neck pain/cervicalgia (M54.2) and headache (R51). If you have a diagnosis for a specific kind of headache, like migraine or tension, there's a gazillion options in ICD-10. If you want to look up any ICD10 code, you can use this "ICD List" search engine. Good luck!

 

[Jessrose21]

@Jessrose21 — The specific ICD-10 code for atlanto-axial instability (I think this is suspected diagnosis most appropriate for 3D CT with rotation) is M53.2X1. Some other supporting codes (things you would be expected to have with CCI/AAI) are neck pain/cervicalgia (M54.2) and headache (R51). If you have a diagnosis for a specific kind of headache, like migraine or tension, there's a gazillion options in ICD-10. If you want to look up any ICD10 code, you can use this "ICD List" search engine. Good luck!

Thanks! I talked the dr's nurse and hopefully we've got it sorted out now. We'll see.

 

[valentinelynx]

So the door neck traction device arrived today and I sat in it for 1hr 20mins @ 10kg. I haven't really noticed anything much symptoms wise as of yet, this is disappointing as I would imagine it would have had an almost instant effect if this was contributing to my symptoms.

What I did notice was that it was very uncomfortable on my jaw.

That's kind of an extreme start! My doctor recommended working up to a maximum of 20 lbs for 20 minutes over about a month. As for the jaw thing, I had the same problem, particularly with the cheap harness that came with the over the door traction kit. There's a much better made head harness available on Amazon: this Bird & Cronin one. You can use it with the same traction kit. With the better head harness, I find that I can get the pressure directed more to the back of my head and less to my chin.