Tracking CCI / AAI MRI & Treatment outcomes

I have been tested for CCI / AAI / Chiari / Spinal Stenosis with specific scans and tested

  • Positive

    Votes: 49 76.6%
  • Negative

    Votes: 15 23.4%

  • Total voters
    64
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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.

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.
How did it go with Dr. B? Did you end up having the surgery?
 

StarChild56

Senior Member
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is there a good threat open already to discuss cci symptoms? I do have major issues after sitting upright (being bedridden for 2 years) while eating, I feel like somebody would strangle me, talking gets a bit more difficult too, did anyone deal with this specific symptom? Its quite worrysome!

Thank you!

@JenB @jeff_w @mattie @Julia_S @StarChild56
Apologies, have not been on here in a very long time.

I don't know if there is a good thread, and also I did not feel like someone was strangling me.

Hope you find answers and feel better.
 
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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.

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?
Hi Mariah,
I just received report from Dr Gilete suggesting O.C Fusion C0 toT1 and C4-5 and C5-6 anterior dissection and fusion for AAI CCI subaxial instability and C4 C5 ,C5-C6 herniation and cervical canal stenosis .. Plan to get 2nd opinion from Dr Bolognese..and research more. on line.which makes me really ill. I am in Uk.Did you receive 2nd opinion ? McTavish
 

bombsh3ll

Senior Member
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I am also looking out for anyone with a no from Dr G. I was diagnosed cranial settling & offered fusion, either C0-2 but recommended lower due to minor instability at C2-4.

It was a negative from Dr B (although I know he doesn't straight off look for settling if no other instability eg rotational or horizontal).

BUT Dr Bolognese did put me back on track for a diagnosis that I had earlier crossed off following my scan being reported as negative for this in the UK - a CSF leak.

I am now awaiting treatment with blood patching.

I have not written off the possibility of fusion surgery should I still be unwell after CSF leak treatment, however the fact that my illness was immediately induced by a very forceful valsalva with no symptoms whatsoever beforehand, suggests to me that any mild instability I do show may be incidental rather than the cause of my illness.

I will not know this until I have undergone treatment for the spinal fluid leak.

B xxx
 
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I am also looking out for anyone with a no from Dr G
I belong to a FB group and I was SUPER suspicious about the almost 100% reporting rate by Dr. G. He, too, diagnosed me based on translational BAI of 6mm from neutral to mild extension and I "think" I can see that on my imaging.

Anyway, another group member shared her report and he said she did NOT have CCI or AAI, and if fact mentioned he was concerned for a CSF leak which I found interesting.

I feel a little better knowing I PERSONALLY know someone who received a negative report.

Along the same line, the distinction NEEDS to be made (and he states this on his report) that these measurements do NOT mean you "need" surgery. Another member had a positive CCI/AAI report from him, and then they met in person and Dr. G said, nope...not a surgical candidate. That's why it is SO IMPORTANT that a face to face connection be made, and that patients shouldn't use these reports as a "diagnosis" per se. And in his report it states "...meets the clinical and neuroimgaing international criteria for diagnosis" and that "...we think she COULD be a candidate for surgery".

So I don't think he is over-diagnosing at all. I think he is using point to point measurements that might be indicating a problem.

I hope that brings some peace of mind...it did for me ;)
 

bombsh3ll

Senior Member
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I hope that brings some peace of mind...it did for me ;)
Thanks for sharing that, it is good to hear.

Anyway, another group member shared her report and he said she did NOT have CCI or AAI, and if fact mentioned he was concerned for a CSF leak which I found interesting.
Wow that is such a coincidence, the exact same thing happened with me when I sent my scan to Dr Bolognese (after Dr G diagnosed cranial settling). My illness was valsalva induced, & as soon as I came across CSF leaks myself I was convinced I had the answer, as nothing else fit with my mode of onset. I got the gadolinium enhanced MRI here specifically to look for a leak & was told it was negative.

I then sent the same scan which contained my whole brain & spine supine to Dr B for a second opinion on CCI - not mentioning my suspicion of CSF leak or inciting event - & he came back with CSF leak.

When I had been to see Dr G I explained what caused my illness, & he did not think of a leak. To be fair regarding the scans though Dr G only saw my upright 1.5 tesla non-contrast MRIs not the 3t supine contrast one, however one upright reported "mild hindbrain herniation" ie brain sag, which is suggestive of a leak.

B xxx
 
Recently got a AAI and HSD dx from dr. Henderson. I started thinking my neck was the cause of my debilitating ME when I went to see a chiropractor about my neck pain. She cracked my neck, and within a few hours i didn't feel sick anymore. my me/cfs went into remmision for three days. No docs could explain it (nsg told me to try cymbalta) and it seemed I didn't have c-spinal stenosis or chiari, which had come up in my research. fast forward to last spring and I was back on the hunt when I saw Jen and Jeff's stories.

I've been seeing Dr. Henderson. my upright mri showed no pathology, rotation ct was inconclusive. He then ordered a DMX (digital motion x-ray) which showed AAI, due to laxity of the alar ligament. CCJ hyper-mobile, but not pathological.

Going to try PT with J.R. Bucklin. Surgery (C1/2 fusion) will only be considered as last resort.

I wear an inflatable traction collar which improves my symptoms quite a bit. Henderson does not use this as a diagnostic tool however.

I was a professional rock climber before onset. I think 20 years of daily cervical extensions (looking up) could have contributed to my instability.