Tracking CCI / AAI MRI & Treatment outcomes

[mattie]

Starting this thread to keep track of ME-CFS patients who have been tested for craniocervical instability / atlantoaxial instability / chiari / spinal stenosis.
Because the number of patients that test positive is getting significant now, especially considering the low number of patients tested.

Please do not post in this thread if you have not done the specific scans that are required for proper diagnosis.

Scans required:
- Upright MRIs with flexion, extension, and rotational views, or
- Supine CT scans with flexion, extension, and rotational views, or
- 3T supine MRI.

1. If you have been diagnosed with ME-CFS and if you did have the (MRI) scans: please take the Poll.
2. Please share your story, treatment and treatment outcome both short and long term.

For general discussion on this subject please go to this thread:
https://forums.phoenixrising.me/ind...instability-cci-as-a-cause-of-your-cfs.56908/

Please do not post in this thread if you have not done the specific scans that are required for proper diagnosis.

@jeff_w @JenB @bombsh3ll @ErdemX @tornerose @bball222 @NaxavisDragonLady @Diwi9 @StarChild56 @brando @debored13 @Daffodil @toyfoof

 

[brando]

Diagnosed with CCI, AAI and Chiari by Dr G in Spain.

He said I’d be a candidate for surgery (as a last resort) “pending further scans” - angiogram and digital X-ray video. I’m going to send to an American CCI specialist surgeon while I’m waiting for NHS neurologist (UK).

I’m also investigating stem cell research in Colorado and Belgium so I have options before getting fusion.

In the meantime I’ve ordered a collar and found a contact for a hypermobility PT locally to start strengthening my neck.

 

[mattie]

Diagnosed with CCI and AAI by Dr. Gilete Barcelona.
Upright MRI done at Medserana Clinic in Hannover Germany.

Possible candidate for C0-C2 fusion surgery, pending motion x-ray.

Moving forward with DMX scan and personal consultation with Dr. Gilete.
Updates will follow in this thread.

 

[gm286]

Also diagnosed with CCI and AAI by Dr Gilete in Barcelona, after Upright MRI at Medserena clinic (London)

Radiology reviewed by Prof Francis Smith (MRI inventor) and diagnosis re-confirmed by Dr Gilete.

Possible candidate for C0-C3 fusion surgery if condition progresses and deteriorates to the point that surgery is viable (this was clarified in a face-to-face discussion with Dr Gilete). Will not opt for surgery unless condition deteriorates (worsening of dysautonomia, CFS/ME).

 

[toyfoof]

3T supine MRI determined to NOT be CCI/AAI by Dr Bolognese in New York, but scan did turn up stenosis in C5-C7 and compressed spinal cord there.

Plan is physical therapy and steroid injections, and to monitor symptoms closely. All doctors/PTs I have consulted with feel that the stenosis and pressure could be contributing to my ME symptoms and my treatment plan should ease those symptoms. I’m happy to track my results here.

 

[NaxavisDragonLady]

Diagnosed CCI with supine MRI fall of last year. I was part of the group that Dr. Kaufman initially consulted with Dr. Bolognese about last year.

I have have had a significantly positive result to manual traction, but a confusing result to over door traction and collars (not to mention allergic to all the collars, so that has added to the struggle). With that info, Dr. K also had me take surveys on tethered cord and glossopharyngeal nerve compression, and results lend suspicion that I my have these as well.

Referred to Dr. B officially in December, got them new patient paperwork this past Friday, and just heard back this morning that they will be in touch to schedule a video conference as soon as Dr. B reviews my paperwork and records. (I am thinking I heard back so fast because he has already reviewed my images and he was the one who advised Dr. Kaufman on the diagnostic treatment protocol I underwent before official referral to Dr. B. Also as far as I understand, he won’t schedule if he doesn’t see something he thinks he can help with, so am hopeful but also slightly scared that since they said they will be scheduling a videoconference with me, that there is something going on that he can hrlp me with- good news, but the idea of these procedures are scary.)

So, assuming when he calls we will be discussing options for the CCI and if/how we evaluate further for tethered cord and the nerve thing.

Also planning on asking about AAI as we hadn’t received a definite answer on that one as far as I am understanding, so want to be sure understand if that has been ruled out based on my imaging or if it needs to be evaluated for differently.

 

[StarChild56]

CCI and probable AAI as well as CSF leaks - accepted to Dr. Bolognese's clinic, have an appointment with him coming up not too long from now. I assume schedule the surgery after that consult. Had a supine MRI with the specific views Dr. B requires.

Have been prescribed manual traction PT, collar (not to be worn when not upright nor more than 4 hours a day) and traction at 20 lbs. The PT and collar have been great. Traction was great the first few times, then got very dizzy and nauseous and have not used it much since then (when I got off it, it stopped).

 

[Malea]

I didn’t vote yet because I‘m only clinically diagnosed by my doctor and haven’t been stabile enough to do an upright mri (because it involves travelling by car and certainly being upright ) but hope to get any images somehow done in the next months.

 

[brando]

Diagnosed with CCI, AAI and Chiari by Dr G in Spain.

He said I’d be a candidate for surgery (as a last resort) “pending further scans” - angiogram and digital X-ray video. I’m going to send to an American CCI specialist surgeon while I’m waiting for NHS neurologist (UK).

I’m also investigating stem cell research in Colorado and Belgium so I have options before getting fusion.

In the meantime I’ve ordered a collar and found a contact for a hypermobility PT locally to start strengthening my neck.

Update: I’m currently investigating stem cell / PRP therapy with a neurosurgeon who now deals exclusively with regenerative medicine in Belgium. I had a Skype consultation and he recommended 20 PRP injections up the neck to see if it improves instability, as the back of the throat injection is “very dangerous” although he does sometimes perform it, it seems he tries to avoid it. For the best chance at these treatments working you have to get your body into as good a shape as possible (as you are using your own cells to heal), so I am ordering Lyme and co-infections test from Germany (ArminLabs) to rule those out first. If I find something I will have to get those under control before doing treatment. I hope I’m able to.
The treatment cos is €3,000 and done under local anesthetic. He said 50% of people experience 80-90% recovery and the others are mixed, and try further treatments etc.
I’m trying to avoid fusion surgery if I can.

 

[veganmua]

Update: I’m currently investigating stem cell / PRP therapy with a neurosurgeon who now deals exclusively with regenerative medicine in Belgium. I had a Skype consultation and he recommended 20 PRP injections up the neck to see if it improves instability, as the back of the throat injection is “very dangerous” although he does sometimes perform it, it seems he tries to avoid it. For the best chance at these treatments working you have to get your body into as good a shape as possible (as you are using your own cells to heal), so I am ordering Lyme and co-infections test from Germany (ArminLabs) to rule those out first. If I find something I will have to get those under control before doing treatment. I hope I’m able to.
The treatment cos is €3,000 and done under local anesthetic. He said 50% of people experience 80-90% recovery and the others are mixed, and try further treatments etc.
I’m trying to avoid fusion surgery if I can.

Hi, would you be willing to share the name of the neurosurgeon in Belgium? Also, if you (or anybody) has any information about getting this diagnosed in the UK, I'd be grateful. I'm currently waiting for a rheumatology referral to get assessed for EDS, who can then refer me for MRIs. I want to email Dr Gilette to look at the MRIs, but I don't know whether to do it beforehand or after they've been done.

 

[me/cfs 27931]

I was given a 2.5T supine MRI to rule out CCI.

Is 2.5T supine adequate for CCI diagnosis?

 

[StarChild56]

I was given a 2.5T supine MRI to rule out CCI.

Is 2.5T supine adequate for CCI diagnosis?

I had a supine cervical MRI, with the required additional views and it was only a .3 Tesla - and dx with CCI/AAI.

 

[CactusJilly]

Today, I just had my UPRIGHT cervical MRI with flexion, extension and rotation views per Jeff's @jeff_w 's recommendation. It just so happens that there is a place right here in the Phoenix area called Stand Up MRI of Arizona. I was told by my doc at Stanford, when I asked him for a script for this, that:

1. He would NOT write for me this imaging
2. That the only upright MRI machines belong to research institutions and would be impossible for me to get in.

After a down-and-out argument where I wanted to punch him in the face Well, a quick Google search later and I downloaded their form, filled it out, and got an appointment in a week. Insurance did not cover it, but it was only $600. (I know)

So, I got my three copies on DVD no problem. Now, to send them off to the experts back East...what should I include in my cover letter??

When I read first read @jeff_w 's "Mechanical Basis" and then @JenB 's subsequent post, I broke down in tears. I *KNOW* this is going to be me. I was a champion high jumper in high school but I had an improper landing technique, landing on my face and head. My neck pain has been unreal over the last 27 years. ME, POTS, MCAS has gotten progressively worse every year.

 

[Hip]

I was a champion high jumper in high school but I had an improper landing technique, landing on my face and head.

A physical trauma may cause not only CCI/AAI, but also Chiari malformation, cervical spinal stenosis, syringomyelia and tethered cord, which can all cause ME/CFS-like symptoms.

All these upper spinal / head conditions are potential explanations for ME/CFS symptoms.

 

[frozenborderline]

CCI and probable AAI as well as CSF leaks - accepted to Dr. Bolognese's clinic, have an appointment with him coming up not too long from now. I assume schedule the surgery after that consult. Had a supine MRI with the specific views Dr. B requires.

Have been prescribed manual traction PT, collar (not to be worn when not upright nor more than 4 hours a day) and traction at 20 lbs. The PT and collar have been great. Traction was great the first few times, then got very dizzy and nauseous and have not used it much since then (when I got off it, it stopped).

i have continued to do traction w pt. Feels great during and then I actually get pretty brutal rebound effect a few hours later

Pt also recommended a non- over the door traction device that he managed to get covered by insurance. Hopefully it helps. It has some kind of inflatable parts. He says it can do lots of pounds of force. I don’t think the rebound effect is the fault of This pt at all. He’s a great guy ans is very willing to work with my limits. He’s even trying to help us save money by training my sister to do traction on me.

 

[Sidny]

@debored13 would you care to share what traction device your pt got your insurance to cover? I wonder if the positive changes can be more permanent without the rebound effect after more long term traction treatments. (but without good supporting tissues it sounds wishful)

I’ve seen some really cheap inflatable traction devices on amazon-wonder how those would work. Overall traction seems like a good thing to attempt I think- right after my infection (within weeks) I began to experience lipoatrophy/collagen loss as well as lax ligaments all over my face head and neck area and remember for a while my head felt too heavy to hold up. I presume those sensations had to do with associated connective tissue degeneration.

This traction video on YouTube seems pretty informative

 

[StarChild56]

i have continued to do traction w pt. Feels great during and then I actually get pretty brutal rebound effect a few hours later

I do continue to usually have a rebound effect a few hours later, too. But for me it is usually very sore/flaring in my most troubled spots and it is bad but medium bad - not brutal. By the next day, that is gone. And actually, not that I've had my 3rd visit with myofascial work - it is lessened considerably....I'm sorry about the rebounding, it is not pleasant I know.

Pt also recommended a non- over the door traction device that he managed to get covered by insurance. Hopefully it helps. It has some kind of inflatable parts. He says it can do lots of pounds of force.

It is great that your PT was able to get your insurance to cover it! I hope you get it soon and that it helps!

My PT did not recommend a non-over the door since my specialist recommended one - but she did say that what she liked about non-over-door traction while laying down is that muscles in your body will be relaxed. As far as the pressure, you probably know this but do not do too much (hopefully Dr. Bolognese gave you a number). My specialist told me 20 lbs which I loved at first, so much I increased it to 25 lbs once. I then asked my specialist and he was adamant not to go over 20 lbs. FWIW.

I don’t think the rebound effect is the fault of This pt at all. He’s a great guy ans is very willing to work with my limits. He’s even trying to help us save money by training my sister to do traction on me.

I don't think so either, as I also have that rebound effect and IIRC, you mentioned that Dr. Bolognese spoke of that fact.

I am so glad you have a great PT and works so well with you. And trying to help save you money - he really sounds like a good person. I am glad you found him. Hoping you greater gains, strength and relief

 

[StarChild56]

@debored13 would you care to share what traction device your pt got your insurance to cover? I wonder if the positive changes can be more permanent without the rebound effect after more long term traction treatments. (but without good supporting tissues it sounds wishful)

I’ve seen some really cheap inflatable traction devices on amazon-wonder how those would work. Overall traction seems like a good thing to attempt I think- right after my infection (within weeks) I began to experience lipoatrophy/collagen loss as well as lax ligaments all over my face head and neck area and remember for a while my head felt too heavy to hold up. I presume those sensations had to do with associated connective tissue degeneration.

This traction video on YouTube seems pretty informative

I only watched the first minute of this video but felt I should at least put this PSA out there:
My specialist would not allow me to have any manual cervical traction until he spoke to the PT personally to instruct them on what they can and can not do. Now I realize every person is different, but my PT NEVER ever puts her hand under my chin. Never. She only cradles the underside of my skull very carefully and gently, with increasing pressure (very slowly) pulls straight back (not lifting up except for slight changes). I think for someone that has serious neck problems (even without CCI) the additional force with the hand under the chin could be dangerous and certainly for me, it is contraindicated.

My PT felt I'd benefit from some very specialized myofascial work, but she made certain to clear it with my specialist first. I am just underlining the severity as I understand it from my specialist and PT about treatments for the neck with CCI and other severe neck problems (which I also have).

 

[Julie Marshall]

I had a supine cervical MRI, with the required additional views and it was only a .3 Tesla - and dx with CCI/AAI.

I am being investigated for CCI. Can I ask for a full description of the MRI and additional views required? Thanks.

 

[lafarfelue]

I am being investigated for CCI. Can I ask for a full description of the MRI and additional views required? Thanks.

In the first instance it is best to seek this information from the specialists/surgeons you will be consulting with, and to get a general idea of what one specific specialist seems to accept/require, to look at Jeff's website https://www.mechanicalbasis.org/ .