cci

I was recently diagnosed with Craniocervical Instability by Dr. Bolognese. All of my MRI measurements are normal, so the diagnosis is based entirely on the measurements from ICT. During ICT, the only measurement that was abnormal was the dynamic BDI, which indicates vertical instability. In the...

Hi everyone, I have mitochondrial dysnfunction as well mcas, cci, ijv compression, Lyme and severe dysautonomia. Urolithin A was recommended to me for mitochondrial issues, and I saw a paper saying it also boosts collagen production and a posts here or there saying it seemed to help floxed...

This is really a concern. The darjeeling is so good I'm getting addicted but Tea in general has more fluoride than coffee which has none, but may be worth the risk for me Get tired of coffee sometimes Probably depends on tea growing region too Fluoride In Tea: Risk, Ranking & Guide (Search...

Link Between CCI and the Markov CBIS bacterial dysbiosis theory of ME/CFS? Dr Igor Markov in the Ukraine say he has found the cause and the cure of ME/CFS: he believes ME/CFS is due to a chronic bacterial dysbiosis in the kidneys, and sometimes also in the nasopharynx (the nasopharynx is an...

Ilene S. Ruhoy, MD, PhD is a board certified neurologist and Medical Director for the Chiari/EDS Center at Mount Sinai South Nassau. Dr. Ruhoy has trained in both pediatric and adult neurology at Seattle Children’s Hospital and the University of Washington where she received additional training...

I've posted my unifying theory of etiology before. But part II is not quite done yet, however it has a lot of the parts there, just not all there, and not assembled properly or in order, so I've decided to kick off working on assembling it by posting about it here. None of the parts by...

I'm sicker than ever. It's hard to explain all the things I need help with with how sick I am and how hard typing is becoming ironically. But some of it includes stuff a social worker would deal with ideally, or just stuff that is under purview of caregiving or doing tasks related to helping...

https://walkerstorz.com/me-cfs-etiology/ This isnt the final form of the theory. I have three substantial parts to add, and it will become even more big and unwieldy. :) But I think that its substantial enough that I may as well put it out there for now. @Hip I referenced your dual factor...

This article details a study at the Stockholm Spine Centre in Sweden involving a single lactic acid injection, which is able to stimulate bulging (prolapsed, herniated) discs in the spine to repair themselves within a few months. The lactic acid (which presumably is injected into the disc...

Starting now and off the top of my head. I will have a caregiver go back to the actual documents to find details as they come up. For now , however, I will post that something is out of range without specific number as I'm going from memory. Abnormal Clivo axial angle, on two separate...

Hi all! I am going to get an upright mri to look for CCI... I was diagnosed with ME/CFS 5 years ago. Also have been diagnosed with EDS and hyperadrenergic POTS. I’m curious if CCI symptoms develop over time. I recently (6months) have developed more neurological symptoms like nonepileptic...

This poll asks whether you have a sacral dimple on your lower back, within (or just above) the crease between the buttocks. If you have a sacral dimple, this may be medically significant, as it can be an indicator of possible spinal abnormalities. And a sacral dimple may also be linked to...

Piggybacking off https://www.mechanicalbasis.org/ + https://forums.phoenixrising.me/threads/have-you-ruled-out-chiari-or-craniocervical-instability-cci-as-a-cause-of-your-cfs.56908/#post-945253 , a story of a man that suffered CFS alongside POTS...I'm inspired to sort out my body, especially...

Just FYI, I’ve started a new hashtag on Twitter, #MEspine: https://twitter.com/hashtag/MESpine I know a lot of folks on PR aren’t on Facebook, where a lot of the EDS, tethered cord, Chiari, CCI/AAI, etc. groups are. Hopefully this will make it easier to follow research and patient stories. Most...

https://atomicchesterton.blogspot.com/2020/06/helpless.html?m=1

I just had my upright MRI completed and I was wondering if anyone could offer some insights :) I have numbness and weakness all over, but it is worse on the R side (along with fatigue, insomnia, GI issues, and PEM). I have not been evaluated for Ehler-danlos, but I do have noted hypermobility...

I am having a hard time with cervical collars. I first got an Aspen but it just didn't fit me, so I got a different back panel, still didn't fit. My PTs all thought it was just too big for me. So I got a Miami J collar in size xs. This one fits much better and is much more comfortable. But it...

As many of you may know, Dr. Bolognese requires that you report dramatic and immediate positive results from a trial of cervical traction before being accepted as a patient for CCI. Many have already reported dramatic and instantaneous positive results from cervical traction. It seems that if...

Article on how neurosurgeons at the Teknon Medical Center in Barcelona are finding that surgical treatment of craniocervical instability (CCI) manages to reduce some symptoms of patients with ME/CFS (this is the center where Dr Gilete works): CATALUNYA - Researchers demonstrate that operating...

Okay, so I've got the full set of flexion, extension and neutral MRIs. It would be really cool if @jeff_w, @JenB and @Hip could give their opinion. :) From my amateurish analysis, a lot of the measurements seem borderline or pathological: CXA in neutral is around 139 degrees, which is...

Are there any members here who tested negative for craniocervical instability (CCI) and related conditions such as Chiari, cervical spinal stenosis and atlantoaxial instability (AAI)? If you tested negative for CCI and related conditions, please could you answer my CCI SURVEY. Thus far, it's...

Craniocervical Instability, Chiari and Spinal Stenosis Survey For ME/CFS patients diagnosed positive or negative for CCI and related conditions This survey is for ME/CFS patients who sent their MRI or CT scan to Dr Gilete, Dr Bolognese, Dr Henderson, Prof Smith or another neurosurgeon and...

Dr Vicenç Gilete and Dr Fraser Henderson both prefer patients to send in upright MRI or CT scans, which include the head in a full range of positions: neutral (head level), flexion (head looking down), extension (looking up) and rotational (looking left and right). By contrast, Dr Paolo...

These Posts Have Been Moved from: https://forums.phoenixrising.me/threads/jen-brea-on-whether-some-of-us-might-be-mis-diagnosed-eds-patients.75684/page-2 Connecting the Dots with EDS in Managing Pain w/Dr. Pradeep Chopra Not sure how this great webinar got past us, but I am posting it here...

Hi! Has anyone ever compiled a resource of imaging facilities that have a 3T machine and could perform the upright MRI to determine if a patient has CCI? Or does anyone know of any/how I could go about finding one? Dr. Chheda is considering writing the MRI order for me, but let me know that I'd...