#Craniocervical Instability (CCI)

[unstablemotions]

Help Save My Cousin's Life 💜

My 25 y/o cousin Line, known as @nebulow online, needs for surgery for Craniocervical Instability (CCI). This is her last resort as she's been deteriorating fast. She's also diagnosed with Congenital Muscular Dystrophy (CMD), which will kill her if her CCI isn't treated.

Here's her Fundraiser

Any amount helps!! If you can't donate, just reblogging/liking this is a help 💜

[autmnsun]

my best friend layla made a gofundme for her boyfriend, who suffers from very severe me/cfs (myalgic encephalomyelitis / chronic fatigue syndrome) and cci (craniocervical instability).

because of these illnesses, he might die. only two doctors in europe do surgery on me/cfs patients, who also suffer from cci, and they are located in spain. he will have to pay a special flight from italy, somewhere to stay and the surgery itself, and none of that is covered by insurance.

he is suffering so much. layla listed a few of his symptoms in his gofundme already, but the only thing he can (or is forced to) do is lie in a dark room with no stimuli AT ALL. no music, no light, no touch, not even being on the phone for too long, accompanied with tons of physical suffering as in pain or seizure-like symptoms. his suffering is not imaginable for people who don‘t have very severe me/cfs.

please read, share and donate. it‘s so very very urgent and a reblog would mean the world and could save his life.

[wildfirefruitjars]

My cousin is in need of help

So this is very different than what I usually post, but my cousin is very ill and needs money for a surgery. While we live in Denmark (yay health care) the operation she needs is unfortunately not availably in our country and she'll have to pay for it herself.

She needs surgery for Craniocervical Instability (CCI). Right now she's unable to do pretty much anything, but lay in a dark and quite room. Her GoFundMe explains better than I can.

I've chosen to share her fundraiser here, in the hopes that anybody who can, and wants to, will help, either by donating or sharing the link.

Now I completely understands that this is asking for a lot! And that not everybody has the means to just give money to a stranger, as somebody without an income myself I stand in just that position. (I'm of course donating to my own cousin, tho)

So if you can, please help my cousin try and get her life back <3

[wheelie-sick]

had the second worst migraine of my life yesterday all because I did two wheelie drops down curbs and my neck decided that was too much. even with a fuck ton of zofran I was still too nauseous to move and on the verge of throwing up. and it lasted for absolute hours. I wanted to go to bed but nooooo I had to stay up until 2am with a migraine because I was in too much pain to sleep. I also wanted to take my migraine medication so much but noooooo that's what gave me the worst migraine of my life. I want to remove my neck, fuck craniocervical instability

[chronicsymptomsyndrome]

feels like I died last night

[disagigglebilities]

Sir, are you aware of where you are working?

[liminalpsych]

I am so tired of brain fog and fatigue

It was getting better and now it’s worse again

I would like to Do Things with my days. any Things. At all. Not have a few client sessions and then stare into space or have to be horizontal between each session in order to get through the day.

I am so tired.

[crowpunkcognitivedecline]

people without neurological, neurocognitive, or intellectual disability DNI with this post - click for details & why

i think i have vascular neurocognitive disability and i kind of want to just lie down and scream lmao.

i really really really want to talk to a doctor about this but my neurologist is super unresponsive* and i don't think my EDS specialist is familiar enough to help beyond telling me to see that neurologist so. wails.

*as in unresponsive to the point that i was in gabapentin withdrawal for a week because she wouldn't answer calls or emails or put in the order

[longhaulerbear]

...cervical instability causes excessive motion of the spinal canal, whose primary job is to protect the spinal cord and nerve roots. When we first examine people as new patients, a message that we try to have them understand is that the word instability should draw a picture for them of the word destruction. Instability is causing the structure and function of the neck to deteriorate...

The complexity of symptoms and conditions that these people suffer from can be summed up as Cervical spine instability causing progressive destruction of the joint structures if not stopped.

When the soft tissue of the cervical spine is damaged, weakened, lax, loose, and degenerating, the bones of the neck wander around. With this wandering in the neck comes a narrowing of the intervertebral neural foramina space, the extent of which can reach the critical point at which the nerve is compressed (radiculopathy) or the spinal cord is compressed (myelopathy).

This narrowing can also decrease or compress the flow of fluid in the blood supply to (arterial) and from (venous) and around (cerebrospinal flow) the spinal cord and nerve roots that they need for proper health and functioning.

Cervical instability can cause the various parts of the spinal cord to be “touched” by bone and give various sensations to distant parts of the body. Indeed, herniated discs, bone spurs, and osteophyte complexes can also ‘touch’ the spinal cord, likewise, causing distant shooting, vibrating, buzzing, and electric shock-like sensations.

Dysesthesias or ‘unusual’ sensory symptoms may happen though no damage or disease can be found. It’s not that the nerve impulses are getting structurally impeded all the time but intermittently when the body is moved in a certain way until there is too much tension on it to carry nerve impulses normally.

In more advanced situations and certainly more frightening to this patient is the “drop attack,” where they would suddenly and for seemingly no reason at all, fall to the ground and then get up as if nothing had happened a few seconds later. (Of course to this patient “as if nothing happened,” is not what is going through their mind.)

...this group of patients can suffer both atherosclerosis and vertebrobasilar insufficiency. In this group of patients, it would not take much by way of neck rotation compression to cut off blood flow to the brain in arteries that are internally clogged.

The main advance in the understanding of blood flow to the structures in the brain, head, face, and neck including the cranial arteries has been in our opinion extracranial and transcranial doppler ultrasound, primarily because this can be done in a physician’s office by the physician or his trained staff.  A problem is, is that these tests are done with the patient in a standard or static position.

Most patients know the exact head position that gives them the symptoms of dizziness, “lack of oxygen to the brain,” and related problems. I can tell you that head position is almost always when they are standing or sitting upright, not when they are lying down, as when these vascular tests are almost always done.

For many years, I ordered these tests and wanted the technician to perform the test in the patient’s “vulnerable to symptoms” position, not in the lying down position. Our patients would relay to us that, unfortunately, their tests were not done the way I ordered them primarily because the technician simply tells the patient, “we don’t do the tests that way.”

Even when disruptions of blood flow were found on the test, the radiologist reading the test would call the test normal. Once when talking to a neurosurgeon colleague he explained “You have to learn to read the scans yourself. The radiologists don’t have experience in reading results from the craniocervical junction.” I was shocked actually when he told me this, but now I know it is true.

The nerves, veins, and arteries of the body are protected from harm because they run close to the bones. Often they are within a few millimeters of bone; thus, any excessive movement of the joints or bones can directly compress and stretch the nerves.

It should be noted that the symptoms are often different when the nervous tissue involved is in the peripheral nervous system versus the autonomic nervous system versus the central nervous system. Central nervous system nerve tension is typically from upper cervical instability and not only affects the cervical spinal cord but can involve the brainstem and brain. When the brainstem and/or brain nerve impulses are altered, the effects can be far-reaching and more dramatic.

Nervous tissue, like the other tissues of the body, depends on nutrient flow into it and toxin flow out. If the flow of nutrient blood flow into the nerve is deficient, the nerve cell function will be impaired and likewise, if the neuron (nerve) cells can not get rid of waste products (toxins) out, it will swell and again nerve impulses will be abnormal. If the fluid flow into or out of individual neurons and collectively (nerves themselves) is compromised so is nerve function.

When one understands the anatomy at the craniocervical junction, it is easy to see how upper cervical instability could cause a blockage of CSF or arterial flow and/or venous drainage causing neurologic-like symptoms. Even if it is just the CSF that is increased, eventually this will lead to an increase in intracranial pressure which can cause reduced blood flow to the nervous tissue in the brain and spinal cord, potentially causing damage.

...anyone with unusual neurological symptoms that go undiagnosed or unexplained by traditional medical means should consider a motion scan of the cervical spine looking for instability. Cervical instability is very reversible cause of many neurological symptoms and syndromes.

When cervical myelopathy patients lay prone – everything calms down – a test where you are laying down is probably not a good test if you are looking for active blood flow problems.

“When it gets bad, I lay down and things calm down for me.”

Often people in their pre-patient interview will tell us that their brain fog and related problems reduce in severity if they lay down. Simply they say things like:

I have neck pain, cognitive problems, insomnia, headache, dizziness, fatigue, and brain fog. When it gets bad, I lay down and things calm down for me. The problem is I am now spending days laying in bed.

Conclusion? Prone positions and non-prone positions create a different [pattern of] blood flow.

...Our testing and treatment center is equipped with x-ray diagnostics with digital motion x-ray because the traditional scans missed so many instabilities.

If the blood flow is intermittently compromised, such as only when the neck is in certain positions, it will be difficult to catch and diagnose. To assess proper blood flow to the body’s most important nerves and nervous tissue (the brain), especially with head and neck motions, we perform transcranial doppler (TCD) and extracranial Doppler (ECD) ultrasound examinations.

It is through dynamic transcranial doppler (TCD) and extracranial Doppler (ECD) ultrasound analysis that this decrease in blood supply can be documented with its root cause being compression of the arteries as they run through the cervical spine.

The problems of Atlantoaxial instability are not problems that sit in isolation. A patient that suffers from Atlantoaxial instability will likely be seen to suffer from many problems as they all relate to upper cervical neck ligament damage and cervical instability. As demonstrated below this includes cervical subluxation, (misalignment of the cervical vertabrae). One of the causes of Vertebrobasilar insufficiency is this cervical misalignment and its “pinching,” or “herniation,” not of a disc, but of the arteries themselves as we suggested above. This creates the situation of ischemia.

When the cervical spine ligaments are weakened, they cannot hold the cervical spine in proper alignment or in its proper anatomical curve. Your head begins to move in a destructive, degenerative manner on top of your neck. This is when cervical artery compression can occur.

In our 2014 research led by Danielle R. Steilen-Matias, MMS, PA-C, published in The Open Orthopaedics Journal, we demonstrated that when the neck ligaments are injured, they become elongated and loose, which causes excessive movement of the cervical vertebrae. In the upper cervical spine (C0-C2), this can cause a number of other symptoms including, but not limited to, nerve irritation, vertebrobasilar insufficiency with associated vertigo and dizziness, tinnitus, facial pain, arm pain, and migraine headaches.

Treating and stabilizing the cervical ligaments can alleviate these problems by preventing excessive abnormal vertebrae movement, the development or advancing of cervical osteoarthritis, and the myriad of problematic symptoms they cause including nerve and arterial compression.

Through extensive research and patient data analysis, it became clear that in order for patients to obtain long-term cures (approximately 90% relief of symptoms) the re-establishment of some lordosis, (the natural cervical spinal curve) in their cervical spine is necessary. Once spinal stabilization is achieved and the normalization of cervical forces by restoring some lordosis, lasting relief of symptoms was highly probable.

[fiberglasscotttoncandy]

Woah, can’t believe I haven’t posted on here in 10 months. Life has gotten weird. My body continues to deteriorate but I’m actually feeling better in some ways. Though I was recently diagnosed with RA.

I moved out of a moldy apartment and was able to come off of half my antihistamines and mast cell stabilizers. I’m finally on IVIG which it took me years to get, and it’s helped with some of my GI symptoms. Found out I have craniocervical instability and possibly also tethered cord and Eagles syndrome, all of which may require surgery along with surgery for Chiari. I’m having a diagnostic surgery next month to find out how bad the CCI is among other things like my intercranial pressure. I’m making progress. But like, I’m also losing the best insurance I’ll probably ever have in my life next April. So I feel like I’m racing against the clock to fit in as much as I can now.

My partner and I have a garden at the church in our old town again. It’s going pretty well and I think we’re finally mastering growing zucchinis. That’s about all I got going for me atm lol. My body may be deteriorating, but at least I can grow a good zucchini 😂

Time is moving so fast and I’m almost 30. I figure I’ll probably have my health and maybe my life in order by 40. Maybe we’ll have a house and a small farm by then. Time really feels like it’s been passing me by lately. I barely see anyone I know because of the pandemic still.

[bougiebutchbitch]

cannot believe I have to come on Tumblr and see people who do not have hEDS telling people with hEDS how their disease is barely a problem really, and they should just shut up about their experiences within the disabled community.

For the record: I absolutely also think some folks with hEDS need to learn that not everything is about them and not comment on the posts of people with entirely different disabilities - but I'm seeing a lot of mockery and minimising of what people with hEDS go through, because of the small group of hEDSers who need to work on their cpunk etiquette. Which feels like it's entirely against what cpunk should be about.

Anyway, my personal experience with hEDS includes:

CCI (craniocervical instability) + associated spinal cord damage + YEARS of damage from regular whiplash degenerative joint disease in multiple joints and my spine in my twenties, which is only gonna get exponentially worse as I age! Yay! cerebrospinal fluid leaks permanant nerve damage and muscle contractures due to scar tissue build up from repeated dislocations + impeded blood flow as a kid that restricts my ability to move arms/legs extreme fatigue frequent bladder and (thankfully less frequent) bowel incontinence :) yayyyy gastrointestinal immotility + dysphagia that means I quite often need a liquid diet regular fainting that's led me to bonk my head more times than I can count frequent subluxations AND full dislocations that cause my joints to swell and be unusable and obviously, constant joint pain

but tell me again about how we 'don't really know what pain is' lmaooooo. Mine's officially 'worse than usual' for an hEDS case, but still. Like. Some of you guys need to sit the fuck down. Not everyone's experiences of hEDS are the same. Some people are barely affected. Some are SEVERELY affected. You can't make a blanket statement about how it affects every single person with the disease. If you don't have it, shut your mouth? :)

[wheelie-sick]

October is Craniocervical Instability Awareness Month!

Craniocervical Instability (CCI) is a condition affecting the cervical spine. CCI happens when the vertebrae in the cervical spine are unstable, this can be caused by pre-existing conditions like Ehlers Danlos Syndrome and inflammatory arthritis as well as trauma to the C-spine.

Craniocervical instability typically consists of a mixture of musculoskeletal and neurological symptoms. Some CCI symptoms include neck pain, feeling of having a "bobble head," trouble swallowing, seizure-like activity, drop attacks, symptoms of dysautonomia, instability, poor coordination, tingling and numbness, vision changes, dystonia, and much, much more.

Craniocervical Instability can be diagnosed several ways. The most common method of diagnosis is a flexion-extension x-ray of the cervical spine followed by a rotational CT if the X-ray shows nothing.

Treatment for craniocervical instability includes physical therapy, neck bracing, and in severe cases, cervical fusion. Of these treatments, only physical therapy is without its problems. Neck bracing can lead to muscle atrophy and a worsening of symptoms so it should not be attempted without a doctor's supervision.

[autmnsun]

PLEASE DON'T LOOK AWAY, PLEASE HELP SAVE A LIFE

my best friend layla made a fundraiser for her boyfriend giuseppe, who suffers from very severe me/cfs (myalgic encephalomyelitis / chronic fatigue syndrome) and cci (craniocervical instability).

me/cfs is a severe neuroimmunological illness that often leaves the people who suffer from it housebound or bedridden. there is no cure for it yet and only a few doctors know how to treat it, most of them don't even know of its existence. that's why we depend on you sharing and donating this.

because of these illnesses, he might die. only two doctors in europe do surgery on me/cfs patients, who also suffer from cci, and they are located in spain. he will have to pay a special flight from italy, somewhere to stay and the surgery itself, and none of that is covered by insurance.

he is suffering so much. layla listed a few of his symptoms in his gofundme already, but the only thing he can (or is forced to) do is lie in a dark room with no stimuli AT ALL. no music, no light, no touch, not even being on the phone for too long, accompanied with tons of physical suffering as in pain or seizure-like symptoms. his suffering is not imaginable for people who don‘t have very severe me/cfs.

please read, share and donate. it‘s so very very urgent and a reblog would mean the world and could save his life. please help us, he needs to live.

if you have any other ideas of how to boost this fundraiser, please let me know!

[disagigglebilities]

Not me holding my head up with my hand because my neck can't support it without extreme pain and dizziness

[alanshee-keeper-of-realms]

Me having dark humor about my Chronic illnesses as I am diagnosed with CCI (craniocervical instability) and thus being required to wear a neck brace practically 24/7:

Dude when I said I was Cyrus Borgs doppelganger that WAS A J0KE I meant it in the cosmetic category not in the ha your disabled category!

[longhaulerbear]

(via Dr. Amy Proal interviews Dr. Ilene Ruhoy about diagnosis/treatment of structural issues such as CCI - YouTube)

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 in mitochondrial medicine and neuromuscular medicine. She also completed a two-year fellowship in Integrative Medicine at the University of Arizona under integrative physician Dr. Andrew Weil. Now, at the Chiari/EDS Center, Ilene uses a combination of both allopathic and integrative approaches to treat patients with chronic conditions such as EDS and ME/CFS, where she focuses on the diagnosis and treatment of structural issues such as craniocervical instability in such patients.

Structural issues can be caused by inflammation, often autoreactive, autoantibodies, etc.

Most viruses have ways to break-down connective tissue.

Doppler ultrasound is helpful for tracking cerebral blood flow.