I had my various scans last week at Medserena, London. Prof Francis Smith interpreted the scans and identified type 3 subluxation of the atlantoaxial joint (AAI) and also hindbrain herniation (10mm through the foramen magnum). Waiting for Dr Gilete's opinion and also that of a neurologist here in the UK.
Hip
Senior Member
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@Mere72 - Yes good idea.
CCI SURVEY
HERE is a link to the survey — I'd be most grateful if ME/CFS patients who tested positive or negative for CCI could answer this survey. It shouldn't take longer than 7 minutes to complete.
CCI SURVEY
HERE is a link to the survey — I'd be most grateful if ME/CFS patients who tested positive or negative for CCI could answer this survey. It shouldn't take longer than 7 minutes to complete.
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LJS
Luke
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I received my diagnosis yesterday from Dr. Gilete. I am still working on gathering more data and finding someone local to do traction with. My illness started a few days after I got whiplash snow-tubing so it makes sense if my symptoms are tied to an issue in my neck.
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How did it go with Dr. B? Did you end up having the surgery?
StarChild56
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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.
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
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
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
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
I hope that brings some peace of mind...it did for me
Thanks for sharing that, it is good to hear.
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
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I was diagnosed with CCI/AAI by Dr. Gilete and also by Dr. Sunil Patel (including tethered cord). I am a surgical candidate. Date pending.
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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.
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.
Try traction and consult with Dr. Bolognese. You may have vertical instability (which does not show up on imaging). He is paying more attention to that now.
what is vertical instability?
Hip
Senior Member
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I've been reading these threads--in astonishment--don't come on here that much. I'm so sorry for all this suffering and so amazed there might be a structural cause for some. I wonder if traction such as a neck brace actually helps short term but longterm allows muscles to atrophy and then worsens the situation. It seems to me that one should uses neck braces on an on-off basis and maybe there are exercises that can be done to strengthen neck muscles as well? Maybe not.
I also began to wonder longterm about stretching and moving to keep circulation flowing and to strengthen muscles and ligaments and so forth. I wonder how many CFS patients who are housebound or bedridden and not moving enough--whether that worsens this kind of thing, especially if they're lying down a lot.
On one facebook group for EDS I was on, some people entirely avoided CCI surgery by taking collagen. It wasn't universal so I have to assume it depends on your mutations/situation/causes. I have HeDS self diagnosed but totally obvious by multiple symptoms/parameters and collagen plus vitamin c in the form of camu camu has been helpful to me. My elevator is out and I have to go up and down five flights of stairs--I could not have easily done this before, especially sometimes several times a day, because I subluxated my knee in 2007 spontaneously, and it was always after that problematic on stairs. With the collagen, so far I haven't noticed any pain or twinging on all these stairs (god willin' it stays that way).
Does anybody wonder if a typical birth, if one had the preconditions here, could have set one up early for some issue? You really get your head and neck squeezed down the birth canal. I was born caesarean and always was upset about that because it meant I didn't get healthy vaginal flora, but now in retrospect maybe that was a good thing.
I also began to wonder longterm about stretching and moving to keep circulation flowing and to strengthen muscles and ligaments and so forth. I wonder how many CFS patients who are housebound or bedridden and not moving enough--whether that worsens this kind of thing, especially if they're lying down a lot.
On one facebook group for EDS I was on, some people entirely avoided CCI surgery by taking collagen. It wasn't universal so I have to assume it depends on your mutations/situation/causes. I have HeDS self diagnosed but totally obvious by multiple symptoms/parameters and collagen plus vitamin c in the form of camu camu has been helpful to me. My elevator is out and I have to go up and down five flights of stairs--I could not have easily done this before, especially sometimes several times a day, because I subluxated my knee in 2007 spontaneously, and it was always after that problematic on stairs. With the collagen, so far I haven't noticed any pain or twinging on all these stairs (god willin' it stays that way).
Does anybody wonder if a typical birth, if one had the preconditions here, could have set one up early for some issue? You really get your head and neck squeezed down the birth canal. I was born caesarean and always was upset about that because it meant I didn't get healthy vaginal flora, but now in retrospect maybe that was a good thing.