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Channel: Connective Tissue Disorders: Collagen, EDS, CCI
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CCI and cervical collars, etc.

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...

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CCI SURVEY – for all ME/CFS patients tested for CCI and related conditions...

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...

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Doxycycline as a CCI treatment: low-dose doxycycline inhibits the MMP enzymes...

Summary: low-dose doxycycline 20 mg twice daily inhibits the MMP enzymes which are secreted by immune cells during viral infection, and which can damage connective tissue such as ligaments. So in...

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Environmental causes of cci and related problems

I wanted to make a thread for speculation about environmental causesof craniocervical instability, since many people without no genetic connective tissue disorders or trauma are turning out to have...

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Craniocervical Instability (CCI) Diagnosis: Supine MRI vs Upright MRI

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),...

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Has anyone got a Digital Motion X-ray (DMX) to look for Neck Instability?

Has anyone got a DMX to look for CCI, AAI, or any other instability of the neck? We're you diagnosed with it or had to get other scans like an upright MRI to find it? I'm scheduled to get one soon....

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Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of...

I personally know of 2 people that for years had a CFS diagnosis and were finally found to have a chiari malformation and their issues resolved after minor surgery. The symptoms of chiari are almost...

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Alternative Non-Surgical Possibilities for Addressing CCI/AAI or Other...

I've long felt my major health issues that led to ME/CFS started with a serious head injury/whiplash as a teenager. So to say that I have a strong interest in the current discussion(s) about CCi/AAi is...

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#MEspine hashtag

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,...

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LASER THERAPY FOR CCI/AAI

What are your thoughts on that? Is there a realistic chance that that might could help? There are different kinds of lasers, and it seems to be quite complex, would you look into it? @Hip

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Tethered cord syndrome

Hi guys, I just wanted to bring your attention to some of what I’ve been sharing on tethered cord and tethered cord syndrome on Twitter. (I’ll probably consolidate this into a Medium post sometime...

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Possibility for Craniocervical Instability

I was talking to the lovely Mary about my dysphagia. She thought it might be CCI. The good news is I am going to get an MRI tomorrow so I can tell the radiologist about this. I do have some of the...

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Had my MRI

This could be CCI. I’m getting the report back tomorrow.

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Where to get Quality PRP Cervical Treatment?

I'm looking to get PRP done on my cervical area as I suspect that I may have some cervical instability, but there doesn't seem to be many providers that have experience with this area. From a quick...

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Feel aqful.

Back again. I haven't been on for a couple of months. I got diagnosed with rheumatoid arthritis in june. I'm now currently on steroids but tapering down and hydroxychloroquine. I felt full of energy on...

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POLL: Do You Have a Sacral Dimple on Your Lower Back? (Can be Medically...

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...

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Using a CT flexion scan to diagnose CCI

I know that under certain circumstances, a CT flexion scan has been used to successfully diagnose CCI. What is the exact description of the scan that needs to be performed? And very importantly, is...

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Manual therapy for CCI

I haven't read about manual therapy for CCI in the forums here yet. Has someone tried it? There are different concepts which possibly might help, for example Maitland, Crafta, special form of Atlas...

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Understanding jugular venous outflow disturbance

I just wanted to share an article that was recently posted to our Facebook group on ME/CFS and structural diagnoses. A woman in it who meets ME/CFS criteria was recently diagnosed with bilateral...

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Signs you should get tested for CCI/AAI/chiari/stenosis/etc?

I'd appreciate a clear and simple explanation of what the signs might be that a person should get tested for CCI/AAI/ chiari / cervical spinal stenosis / any other similar things. My ME is severe and...

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