Tracking CCI / AAI MRI & Treatment outcomes

[frozenborderline]

I got my medical report from dr g and the medical report from dr b on the same day. I know some are skeptical of dr g maybe diagnosing everyone w cci, but the measurements at least in neutral position w/ dr G lined up w those of dr b. However dr B chose not to include my flexion measurements which were more severe.

The one surprising thing is that I was diagnosed w/ aai based on a rotational ct scan in which I only rotated 66 degrees. I thought I’d totally blown it, no chance of that showing. I do want to send that rotational ct to Bolognese to get his opinion.

 

[bombsh3ll]

Hi all, I just got diagnosed by Gilete — CCI and AAI. Possible candidate for C0 to T1 cervical fusion...
I don’t know how I feel exactly. I think I need to hear a second opinion from Bolognese. But.. progress.

That's interesting. Like you, I don't know whether to class it a plus or a minus. Was that an in person visit or just sending your imaging in?

But, is it 100% yes with Dr. G? Anyone here gotten a no from Dr. G?

That's exactly what I want to know. I did hear secondhand (from another patient of his) that he turned two people down that she knew of, but not because he thought they didn't need surgery - one was mentally ill (but still diagnosed with a surgical problem on imaging, just that she wasn't in the right frame of mind for surgery at that time), and the other person's imaging was too poor quality to read.

So still nobody that I have heard of either directly or indirectly, has been told they DON'T need surgery by Dr G. It's concerning.

B xxx

 

[bombsh3ll]

I know some are skeptical of dr g maybe diagnosing everyone w cci, but the measurements at least in neutral position w/ dr G lined up w those of dr b. However dr B chose not to include my flexion measurements which were more severe.

Thanks, that is somewhat reassuring to me. I think ultimately I will go ahead with the surgery if my next step of excluding venous outflow obstruction/raised intracranial pressure is negative, as I don't want to live with the chance that something I could have tried might have worked, but I didn't try.

B xxx

 

[frozenborderline]

I am still trying to figure out why dr b didn’t address or include flexion measurements in his report. My flexion cxa is far more severe than neutral even though neutral is borderline for surgical (so fairly clear cci)

 

[Malea]

I am still trying to figure out why dr b didn’t address or include flexion measurements in his report. My flexion cxa is far more severe than neutral even though neutral is borderline for surgical (so fairly clear cci)

In one of his presentations Dr B mentioned that the big problem with flexion/extension (or even upright? Not sure) is that it is not standardized. How far one goes in these positions depends totally on the radiologist/ the patient.
So..that could be a reason.

 

[MEPatient345]

Was that an in person visit or just sending your imaging in?

It was sending imaging in

So still nobody that I have heard of either directly or indirectly, has been told they DON'T need surgery by Dr G. It's concerning

An EDS person who had surgery w Gilete just told me he knows several people who were turned down by him. This guy had a lot of the same symptoms I have (one of his videos describes feeling drunk which I feel, always) but he had a less severe CCI diagnosis than I. He was fused C0 to C2 by Gilete and is completely 100% fine now. This after twenty years of wrong diagnoses like MS and stroke.

Among our little group here, we are all getting differing diagnosis and surgical options from Gilete.. so.. am hopeful he is correct. I will feel better if I can get a concurring second opinion.

 

[MEPatient345]

Here is the YouTube channel of the EDS guy I mentioned.. Martin.
https://m.youtube.com/playlist?list=PLtsQlTY5SsZ539MrpfCeIWKegkUJMEOPl

 

[junkcrap50]

Just to spread the news:

https://twitter.com/i/web/status/1138518810997084160

 

[AnkeC]

I cast my vote above — now it’s at 60% yes and 40% no. But, is it 100% yes with Dr. G? Anyone here gotten a no from Dr. G?

I checked with his assistant Amy, asking a similar question, and it seems that Dr G will only review cases he suspects have issues. If he doesnts ee anything in your upload or description, he will not ask you to go ahead with the online consult.

 

[MEPatient345]

Ive gotten quite a lot of glowing reviews of Gilete from his EDS patients on Facebook. Many saying yes he turns people away if not right for surgery, but that it seems like he approves a lot bc so many people are so ill by the time they see him. Many saying what an amazing job he did for them, helping them recover function, even saving lives. He certainly has a lot of fans.. making me feel a lot more comfortable to consider going with him.

 

[Joly]

I had my uMRI yesterday. Everything went smoothly although I am crashing today because of the exertion of it all.

The MRI itself was okay, uncomfortable and hard work but not the worst thing I’ve ever been through.
The least fun part for me was the flexion position because with the equipment around my neck it compressed my throat and nose. I felt like I couldn’t breathe properly which panicked me and I kept swallowing compulsively even though I was trying to keep still, which panicked me more because I thought it would ruin the images and I’d have to do it over again. I could/should have stopped and arranged myself more comfortably but I wanted to get it all over with. Anyway, apparently it came out okay and other than that and the aches and pains and general strain of holding positions and sitting upright and still, it wasn’t too bad.

I knew the clinic can’t tell you anything about your results so I wouldn't learn anything right away, although the very kind and helpful technician who took my scans at one point while positioning my head asked me something like: “Your left side is more uncomfortable than your right, is that correct?” which did indicate to me that they might have seen something there. Or maybe I just flinched more from that side, who knows. It’s also the side I hit when I had a bad fall in 2007, so could be related to that.

Since I made the appointment I’ve been cycling back and forth from “It’s not going to be CCI/AAI” to “But they have to find something there, why else am I in so much pain?” so I did something maybe inadvisable and looked at some of the images from the CD they give you after. Probably a silly idea because I’m far from a neurologist and all it did was frustrate me because I don’t know enough to interpret anything.

I’m just going to have to wait to find out what Dr Gilete sees when he looks over my scans, will update here when I get the results.

 

[User891]

Hello everyone. I have just joined the forum to add to the discussion/poll. I recently had an upright MRI in the UK and Dr Gilete confirmed Basilar Invagination, CCI, AAI, and subaxial instability probably up to C6 to be confirmed by cinerradiology. My history includes diagnosis of Post-viral fatigue syndrome (2010 NHS) triggered by food poisoning. 'Chronic fatigue with a disautonomic phenotype’ following a tilt table test in 2015 (NHS). Subsequent diagnosis of ‘Joint Hypermobility Syndrome (EDS Type III)’ later in 2015 (private consultation with consultant rheumatologist). In 2016 the Joint Hypermobility/EDS diagnosis was dismissed by a different NHS consultant rheumatologist, with her diagnosis once again 'CFS/ME’.

 

[AnkeC]

Hello everyone. I have just joined the forum to add to the discussion/poll. I recently had an upright MRI in the UK and Dr Gilete confirmed Basilar Invagination, CCI, AAI, and subaxial instability probably up to C6 to be confirmed by cinerradiology. My history includes diagnosis of Post-viral fatigue syndrome (2010 NHS) triggered by food poisoning. 'Chronic fatigue with a disautonomic phenotype’ following a tilt table test in 2015 (NHS). Subsequent diagnosis of ‘Joint Hypermobility Syndrome (EDS Type III)’ later in 2015 (private consultation with consultant rheumatologist). In 2016 the Joint Hypermobility/EDS diagnosis was dismissed by a different NHS consultant rheumatologist, with her diagnosis once again 'CFS/ME’.

Hi User891,

I just got diagnosed by Dr G as well, yesterday in fact. Am feeling overwhelmed because I expected to be rejected. Now I am not sure what to do next.

Welcome to this bunch of zebras we find ourselves in. Hope your diagnosis will lead you to good stuff.

 

[moonell]

Hello everyone, joining in to report dr. Gilete also wrote back to me: meets clinical and neuroimaging international criteria for diagnosis of craniocervical instability (CCI)* and atlantoaxial subluxation(AAI). Recommended Occipitocervical posterior fusion stabilization with intraoperative reduction (traction) after doing some additional imaging.

@AnkeC I also expected to be rejected, also have no idea what to do next. I'm from Czech Republic and I can't really see anyone here about this.

 

[bombsh3ll]

Hi @User891, @AnkeC & @moonell,

Looks like there will be a bunch of us going to Spain!

I cannot shake my slight skepticism though that everyone is getting a surgical diagnosis by Dr G. I have not (at least first hand) come across anyone being told their scans are normal.

I would be really comforted if anyone could post if they have sent scans there and been told they do not need surgery.

@Joly please can you post your report from Dr G when you get it even if negative, and @Silencio please post if you get a second opinion whether it concurs or not, so we can get as big a picture on this as possible?

B xxx

 

[Joly]

@bombsh3ll I will definitely post here when I get my report and if it is positive I will most likely be looking into getting a second opinion also.

 

[MEPatient345]

Hi @bombsh3ll and others,
I just was reading through a FB group post, and came across some comments by @jeff_w. He was explaining to someone who had been rejected by Dr. Bolognese why they might have been rejected, and why they should seek other opinions. I think this might explain why Dr B rejects more patients than Dr Gilete. He is restricting his patient population to chiari and CCI, not including more common surgeries on lower spine. I hope Jeff doesn’t mind if I cut and paste his comments, since they are relevant to this thread and don’t include anything personal:
——
“Dr. Bolognese will decline to see patients who have "only" lower instability, as you do. Reason being, you should be able to find another neurosurgeon willing to treat you, because lower instability is more common and routine than CCI. You're not without other options, as someone with CCI would be, and Dr. B knows this and factors it in to which patients he decides to see.

So your next steps would be to find a neurosurgeon to treat your lower c-spine instability, which is helpfully noted on your radiology report.. What you'll find though in patient populations is that "mild" instability can cause significant symptoms (though not always). And that "mild" designation can make it hard to find treatment. But your bobblehead sensation and overall clinical picture suggests that your unstable c-spine is causing significant impairment in your quality of life “

 

[Hip]

For ME/CFS patients who have sent their MRI scans to neurosurgeons such as Dr Henderson, Dr Bolognese or Dr Gilete, and received back a diagnosis and report, could you please detail what is in that report?

In particular, does the report include figures for these measurements:

Clivo-axial angle (CXA)
Grabb-Oakes measurement (B-pC2)
Basion-dens interval (BDI) — Harris method
Basion-axis interval (BAI) — Harris method

The four above measurements made on the MRI image, and are used to diagnose CCI. For example, a clivo-axial angle (CXA) less than 135º is considered pathological, and indicates CCI.


Also, in this report, do these neurosurgeons also comment on whether or not you have:

Chiari malformation
cervical spinal stenosis
tethered cord
syringomyelia


Is it possible to upload your reports (anonymized) onto this thread, so that the above details can be seen?


I am working on a short questionnaire aimed at ME/CFS patients who have sent their MRI scans to these neurosurgeons. The idea is to collate all these measurements, which might be useful for scientists who want to investigate the CCI – ME/CFS connection.

 

[bombsh3ll]

Here is my report from Dr Gilete:

Craniocervical Junction & Cervical Spine
She describes a cervicomedullary syndrome, with a 40% Brainstem Disability Index, KS 60 and pain questionnaires as severe disability pain.
She had reported on previous questionnaires that her main symptomatology was:
·Postural tachycardia syndrome - severe orthostatic intolerance, lightheadedness, syncope
·Poor cerebral blood flow
·Hypermobile ehlers danlos syndrome.

On the other hand she reported:
· Urinary urgency
· Urinate more than 6 times per day
· Awaken from sleep to urinate during the night


The Upright MRI shows:

Neutral CXA 135°
Flexion CXA 129°
Extension CXA 136°
Grabb 7,45 neutral and 9 in flexion and 7,44 in extension.
Translational BAI:2,06 mm (Neu:7,45, Flex: 9, Ext: 7,44).
No significant cerebellar tonsils ectopia.
The tip of the odontoid peg lies at the level of Chamberlain's line and BDI could not be realistically measured so it can be a cranial settling sign.
We cannot evaluate possible AAI due to the fact that the the MRI does not contain any rotational head-neck images.

Signs of subaxial instability at:
C2-C3 & C3-C4.

Cinerradiology will be recommended to finally assess subaxial instability.
Thus I think that she possibly has:
Potential C1-C2 vertical translocation & cranial settling.

So, I recommend to complete study by means of cervical spine cinerradiology or DMX to evaluate subaxial instabilities and full spine radiology. This could be done in Barcelona, prior to consultation or surgery, if they decide to come.

Dr Bolognese email:
You do not appear to have instability.
You should be investigated for CSF leaks.

B xxx

 

[bombsh3ll]

The four above measurements made on the MRI image, and are used to diagnose CCI. For example, a clivo-axial angle (CXA) less that 135º is considered pathological, and indicates CCI.

I didn't actually think there was anything wrong with my CXA but note it is 129 in flexion. Does the above refer to the neutral position only?

B xxx