#cranio cervical instability

[spoonielivingfree]

On going undiagnosed

The NHS has a really nasty habit of dismissing and gaslighting EDS patients. Not seeing beyond the norm and thinking further. The NHS has a habit of not properly diagnosing EDS and the various issues that arise as a result. Today I went to a specialist physio about my EDS head to toe body. She decided due to the extent of my neck and neurological symptoms + head pain that should be the priority…

[crowslunasidhe]

I'm on day two of a migraine. My migraines have been becoming more frequent. It feels like highschool all over again.

In highschool i used to get 3-4 migraines a week, sometimes more, I was incapacitated by them. Eventually with the help of a neurologist I got onto a preventative medicine that worked and reduced my migraines to maybe once or twice a month.

But now that medicine isn't working like it used to and I'm getting more and more migraines. I do have EDS and i think cranio-cervical instability may be playing a role in my migraines, but it's not the only factor.

Also the medicine I take to treat the migraines acutely, Rizatriptan/Maxalt, messes with my POTS, makes my heart go tachycardic. So I have to find a new acute migraine med too.

If y'all are the praying type, please pray for me. I could really use it.

[dissociacrip]

genuinely wish people would stop asking me "have you considered (h)EDS?" because:

1. i was denied genetic testing for monogenic forms of EDS due to lacking certain clinic signs regardless of symptom profile

2. my main issue as of late regarding musculoskeletal things is that my muscles are bad, my muscles have been giving me the most grief, not my joints

3. having an hEDS diagnosis would not be nearly as useful to me as a potential diagnosis of some of the comorbidities of hEDS, for example an average doctor is more likely to know/care about specific things like spondylosis or cranio-cervical instability vs. hEDS because it's not a well-defined condition (as in there is no "gold-standard you definitely have this no questions asked" diagnostic criteria) & doctors who are equipped to diagnose it aren't exceedingly common

i meet the baseline diagnostic criteria for generalized HSD and i'm fine with that, i don't see why getting diagnosed with hEDS would somehow make any useful difference, it's starting to feel a lot like being told "have you tried [x]?" at this point, it's not helpful to me

[per1shed]

it’s april now i wanted to update anyone who hasn’t been following my instagram: besides mecfs that has progressed to a state unimaginable, i was now diagnosed with cranio cervical instability. at the moment i am in barcelona because there’s only two neurosurgeons in europe who treat cci in mecfs patients. cci can cause mecfs, pots and mcas so everything that i am diagnosed with. tomorrow i’ll have a very long and hard surgery and will be put into coma for a day or two after. this surgery will hopefully save my life, it’s my last chance. i hope i can soon come back to posting on here and leave instagram again as i’m just not comfortable there. but most of all i hope i can get out of this bed, the dark room with no noise no stimuli no nothing. eating liquid food, not being able to even go to the toilet by myself. just hell every single day.

you can donate here

[alanshee-keeper-of-realms]

Oswald Rabbit Cosplay HCs

Yes I'm a Cosplay Tik Toker yes I do videos like this, however I decided to bring the madness over because well Tik Toks gone so squirelly with the algorithm that I am no longer having any of my drafted videos or ones I post seen (legit deleted a bunch because they sat at 0 Views for a couple weeks formerly was about 400) , and when you edit for hours on some to provide entertainment to over 2500 followers its unbelievably frustrating,

It sucks as this a livelihood my families entertained for Generations, we were the Vaudeville actors we did Mariachi had a whole band, another was famous around the local Midwest as couple troup, my grandfather rejected a job offer from Walt Disney himself, I'm just the latest in the Family lineage to be an entertainer

So have a laugh at my wild headcannons I hope you're entertained. Oh yes and that's the neck brace you guys normally don't get to see don't worry it's just cranio cervical instability it's not actually injured it's just weak due to EDS caused injuries and natural degradation, so I just wear the brace to support my head properly.

[whump-4-ever]

I have written this post partially to vent but also to try and show others out there that have chronic illness, no matter what illnesses they may be, that they’re not alone.

-

This post is from me personally. It’s not in the perspective of any of my characters, and it’s not fiction or a prompt.

Often times I have to explain to people why I’ve never had a job or finished high school or learned how to drive. Sometimes when I tell them how I don’t work or go to school and that I spend most of my time sleeping, they will respond with ‘oh, you’re so lucky you get to sleep all the time! I wish I could sleep all day every day and not do anything’, or something along those lines and it’s infuriating to hear that. People think that I’m choosing to sleep, that I want to do nothing all day every single day. Let me make this very clear: I don’t get to sleep all the time. I have to sleep all the time. If I don’t, I can’t function. I can hardly function at all as it is. Chronic illness of ANY KIND is not a choice, and there’s nothing ‘lucky’ about it. I want nothing more than to just have my life back. I’ve been mostly bed-ridden since I was just 16 years old. I haven’t graduated high school, I haven’t gotten a driver’s license, I haven’t had my first kiss (haven’t even liked a guy who has liked me back), I don’t even know how to cook or use a fucking bank account or write a check. I’m so fatigued and physically weak that I can barely walk up and down the stairs in my house. Just the simple task of being awake drains my internal battery to the point where I’m so drowsy that I struggle to talk and think. Often times I stumble over my words because I’m so exhausted that they just get twisted up. Im also frequently forgetting shit, even if it happened two minutes beforehand. My point is that nobody who truly suffers from CFS/ME (chronic fatigue syndrome/myalgic encephalomyelitis) MCAS (mast cell activation syndrome), POTS (postural orthostatic tachycardia syndrome), and CCI (cranio-cervical instability/cranial cervical instability) would ever choose to live like this. And it’s sure as hell not as easy as just ‘pushing through it’ or ‘maybe if you just try hard enough’, or ‘if you had enough willpower to do it, you could do it’. That isn’t how it works. That’s like telling someone who’s paralyzed that they can walk if they ‘just try hard enough’. An ex internet friend of mine told me a few weeks ago that ‘being tired is no excuse’. It’s not an ‘excuse’, and it’s much more than ‘being tired’. This fatigue is fucking debilitating and when people like him say shit like that, it really belittles the condition and undermines what sufferers have to go through every damn day. The same guy also said to me directly that: ‘there are so many people who are so much worse than you and do a lot more than you do’, and that’s when he told me if I he’d enough willpower, I could do things like getting a job or getting a driver’s license. That ‘willpower’ that he speaks of? If I didn’t have it, I would never even get out of my bed, so don’t fucking imply that I’m just not willing to get better and that’s why I’m still sick

[clinically-chronically]

Surgery no. 11

1st Major Surgery

1st Neurosurgery

Occiput-C2 spinal fusion.

We are officially 1 week post op. And there already has been so many improvements. For once I can say that my new normal is better than my previous 'Normal'.

My gait has improved so much to the point where I no longer need to use my cane inside of my own house. My right sided weakness is nearly completely gone. My nystagmus is also almost completely gone too. My daily headaches and migraines were instantly gone. My hands are slowly growing more and more functional.

I however, have not noticed a difference in my dysautonomia or Gastroparesis/intestinal dysmotility. However, this is pretty early on yet too. So we shall see where this will take us.

My neurosurgeon said it will take about 1 year to notice the full effects of the fusion and at around 3 years for my spine to completely fuse. And yet, we already have so many improvements. I'm happy with how things are going for once.

[strangecintia]

What I Need, I Eat Wouldn't it be great if we could solve our problems just like that? The same way ancestral tribes thought that by eating certain parts of their enemies' bodies they would get specific perks? This artwork wants to convey a desperate attempt to fix something that's lacking and supposedly can't be fixed. It's a direct reference to the author's situation. It took Cintia 1 full year to finish this work that would have only taken her a couple of days to complete before she got disabled and mostly bedridden 2 years ago. She's been suffering from ME/CFS for 20 years and has recently been diagnosed with CCI (Cranio Cervical Instability), which gives her the chance to get her life back through specific spinal surgery, the only option in existence at the moment that can hi-jack ME/CFS. https://knownorigin.io/gallery/15690000-what-i-need-i-eat

[superspoonie24]

Welcome!

BOOPS WANTED AND WELCOMED. I HAVE NEVER WANTED ANYTHING MORE.

🐾🐈🧡

Congrats! You found me! Now that you have, here’s a little bit about me. 

I’m Lynx, 22, he/they, bipanacetrans boi

I write and occasionally even post stuff! My ao3 is SuckerForLove24. You can check my writings there and also going through (tumblr got rid of my tags will establish new ones eventually) in my blog. I also have writing commissions open. 

I am dealing with chronic pain, and I will be tracking my experience with that through #did you know: pain sucks. (This tag also got deleted by tumblr)

What I have been diagnosed with:

Generalized Anxiety Disorder

Persistent Depressive Disorder

POTS (postural orthostatic tachycardia syndrome)

OH (orthostatic hypotension)

Endometriosis

hEDS (hypermobile ehlers danlos syndrome)

CCI/AAI (cervical cranio instability and atlanto axial instability)

Tumblr got rid of my saved tags. (Fuck you tumblr)

I use this blog to share stuff I like and/or relate to. If you have any questions or want to shoot me an ask, (check #ask aly). I will do my best to respond as soon as possible. I want to make more friends, so don’t hesitate to drop in and send me an ask about chronic pain or fandom. I am multi-fandom and multi-shipper. This is my safe-space, and I hope it can be one for you too. 

Another update! Tumblr got rid of group chats so if you want to talk/vent/ask questions about chronic illnesses/pain DM me

Remember: “You are braver than you believe, stronger than you seem, and smarter than you think.” And, you are so very very loved.  🧡

[exoskeletonned]

9 Jan 2020

My last personal post detailed my symptoms and how they were getting worse; that was on January 2nd. Well, on the 6th they got bad enough that I had to go to the emergency room.

My muscle spasms were particularly bad in my neck, face, and chest, and they got to the point where they were cutting off my airway and choking me. Also, my entire right side went numb. The whole not-breathing thing was particularly concerning, which is what ultimately sent me to the ER. I was worried that the symptoms were due to cranio-cervical instability, and the doctor ordered a CT angiogram of my neck and head so he could see both my vertebrae and brainstem/brain/blood vessels/other soft tissues. Turns out I was fine structurally, but something was still definitely funky neurologically.

I ended up getting a diagnosis because the doctor went over my entire history and saw that I’d had ongoing symptoms like this for 3 years. I was kind of incredulous because it had gone undiagnosed for so long, but here I am! Anyway, my diagnosis is Functional Neurological Disorder. Here’s the Wiki link but the tl;dr is that my nervous system is structurally intact, but functionally a wreck. In other words, it’s full of misfirings and miscommunications even though there’s no one particular source of injury (sort of like fibromyalgia, which I also actually have).

The only treatment is physical therapy, occupational therapy, and talk therapy - so basically, a lot of different therapies. There’s also pain meds, if your particular FND symptoms cause pain, which mine do on occasion, but I don’t think I’m going to need pain meds for mine. I’ve also been scheduled for a full neuropsych evaluation, both for good measure, and to hopefully determine what particular therapies I might benefit from.

In the meantime, it’s good to know that my neck isn’t too unstable and that my neurological symptoms aren’t due to something that’s actively dangerous.

(My current symptoms are hemiparesis, AKA paralysis on one side of my body; overall weakness/numbness; blurry vision; light sensitivity; hearing loss; balance loss; foot drop; frequent headaches and migraines; dysphagia/trouble swallowing; and muscle spasms, both dystonia and myoclonus.)

[freakhalestorm]

This month is awareness month.

Many conditions have may as their awareness month.

Ehlers danlos syndrome is one of them. A hidden yet painful condition where the average wait for diagnosis is about 18yrs.

We call ourselves zebras. Docs are taught when u hear hooves it's horses not zebras, meaning the symptoms are usually because of a common health issue. Many with eds are misdiagnosed or labelled as attention/drug seekers before diagnosis.

We aren't just a bit bendy either.

We deal with chronic pain, dislocations, poor/slow healing, fragile skin that tears easy, risk of organ rupture, chiari malformation, cranio cervical instability, arthritis, fibromyalgia, mental health issues... The list goes on.

My docs don't know much about it and their information is now out of date as of 2016.

Fibromyalgia and eds are the reasons i am going AWOL for more than a day, this time of year in the UK the weather is a bit undecided. So it can be sunny in the morning yet raining in the afternoon, chronic pain like mine reacts badly to weather changes. I have also deteriorated, my right shoulder is now in constant pain; I'm likely dislocating it in my sleep and not noticing. Yes that happens alot though it's usually a finger or ankle.

It's genetic, there's no cure. I can only treat symptoms and injuries.

Thanks to the blogs and the FB page i admin I'm more stable mentally.

I'm grateful for your patience and understanding when i need time offline to sort out, flares not nice to me. It's like the pain of a broken bone minus the broken bone. Lol.

May this year be kind to you.

Kat

[goofygargoyle]

I can't even breathe when I think about how if the medical system wasn't total crap they would've discovered my occipital misalignment when I had a brain MRI as a teenager

They were checking for a brain tumor. Because I'd had chronic headaches for more than 5 years. And someone was like maybe we should check that this kid doesn't have a tumor juuuust in case?

And the resolution on that MRI was shit. And they were just checking for something that would be very obvious. Nobody was actually trying to figure out why I had headaches.

Two and a half years ago I accidentally discovered that my occipital bone is misaligned when I was doing traction trials for cranio cervical instability. And yes, I discovered it. The neurosurgeon I was doing the trials under didn't even listen to the words when I told him.

Another neurosurgeon Tuesday. Video consult. He does EEA, that's endoscopic endonasal approach, neurosurgery. So maybe he has the ability to remove the less than 2mm by 3mm bit of bone from the anterior rim of my foramen magnum? No idea if he'll listen to the actual situation though.

[digidrakncreature]

In case anyone here follows just my altbeing tumblrs and not my main and didn't understand what I was talking about wrt my skull and chronic illness:

tldr: I have cervical medullary syndrome but not cci.

it seems that something in or near my skull is misaligned and needs surgical correction. Symptoms started as toddler and got progressively worse continuing to present, 30 years old.

There's a ton of evidence but it's too small to show on any imaging so I can't find a neurosurgeon who will help

I have the same symptoms as cranio cervical instability, cervical medullary syndrome, but my cervical spine (bones in the neck) is stable. Traction testing revealed that something is off about the occipital bone of my skull.

The most likely theory is that when my skull fused at 2 years old or whenever, the lambdoid suture

[shown here: a 3D render of a human skull with the occipital bone removed to show where it connects]

fused incorrectly, maybe a few microns off, causing microscopic brainstem compression

[shown here: underside of 3D rendered human skull with a small black circle at the front of the foramen magnum]

here, at the front of the foramen magnum (brainstem hole) (Google says it's called "the basion"?)

This would explain:

- my symptoms

- the glacial progression of my symptoms from toddler to now age 30

- why nothing shows up on any imaging

- why my symptoms are relieved when my skull is pushed up from here:

but any other traction, like an invasive cervical traction, does nothing

[shown here: a photo of someone with the invasive cervical traction skull thing in their head because I don't have any photos of myself when I had it, I've obscured their face and drawn on my expression at the time. Second photo is the pulley from an invasive cervical traction, again from the internet since I didn't get photos]

So unfortunately nothing shows up in Xrays, MRIs, or even the SPECT bone CT fusion scan I had to get.

I've been... dismissed by more than 11 neurosurgeons.

under cut: explicit recounts of medical abuse

THE cci/chiari malformation neurosurgeon in my area did my invasive cervical traction. He didn't listen to a fucking word I said. I explained that the test would be negative, that only pushing up on the back of my skull relieves my symptoms, but he just kept repeating "You have occipital neuralgia" loudly until I stopped trying to talk. Occipital neuralgia is when the occipital nerve cluster is inflamed -- it causes headaches which get Much Worse if pressure is put on the back of the skull. Literally the opposite of what I was trying to tell him. I knew he was wrong at the time.

Several doctors refused to take my case out of self preservation: it would be risky to their careers if they tried to save my life.

Several surgeons refuse to take me because my MRIs don't show anything.

One neurosurgeon I dragged myself into the city to see in person. My body gave out while waiting in the examination room. He tried to tell me "Good news you don't need surgery" and then didn't understand why I started crying. He then spent the next half an hour or so berating me for not being able to stand (from the floor where I was sitting because the chair had been too painful) and walk out. He insisted that if I walked in I should be able to walk out. I tried to explain that my body was in way way too much pain and I was physically unable -- that I'd pushed myself too hard to get here in the first place, but he kept telling me I was a bad, selfish person for occupying a room they needed to see patients in. Eventually the staff brought a wheelchair and helped me get up to get in it. They only wheeled me to the exit, forcing me to very slowly and painfully hobble a block to the ER they're affiliated with and totally could have taken me to.

I got screened in a video call and the doctor doing the screening Actually Understood and I was like Holy Shit??? But. The surgeon dropped me when the spect scan came back clean, and I can't contact the screening doctor.

Some experimental place in another part of the US wants me to go there for some stem cell strengthening of some neck ligaments to try to fix the problem. They don't take insurance.

I've already had a chiropractor try to manually realign my occipital; my symptoms continued to progress and I was unable to continue appointments.

My symptoms are severe, my quality of life is bad, I'm struggling.

As far as I can guess, based on limited knowledge, there's these options for fixing it:

1) surgically tighten lambdoid suture, like with screws or something

2) go in through back of throat and widen foramen magnum at the basion (probably ligaments and stuff in the way, probably impossible or inadvisable.)

3) occipitocervical fusion -- put in the stuff and push skull up with the top of the spine as the base to push from. Extremely inadvisable, would cause a ton of issues.

[learningdisabilitynurse]

Pacing: Me, myself, and my EDS.

I usually use this blog to talk about specifically nursing topics, but today I’m talking about myself, and in a way, what I need to do to keep doing what I love, and that is something I am not very good at: Pacing. 

I have Ehlers Danlos Syndrome.  (But no, I do not yet know what type as I am awaiting full diagnostic screening.)

My lovely sister has Ehlers Danlos Syndrome, classic type, and has been diagnosed for some time now. She’s suffered no end with her dislocations, her dizziness, her reflux and funky heart rate and poor healing etc etc etc, but up until around a year ago I suffered very little pain (obviously, seeing her in pain will always suck, but I always considered myself the luckier one). When I did, I rested and managed. I’ve had physiotherapy for various parts of me over the years but it’s always been a short term treatment, I tried to maintain strength for a long time, I’ve always sat in funky positions and been hypermobile without pain associated and I had only dislocated my shoulders (and from last year, my knuckles)..... until this past year.  

This past year has been a huge learning curve for me, and I have some learning points now, but I must admit I haven’t quite put them into action. 

So, a few things I struggle with now that I previously managed:

- Hip subluxations (mostly my left side, although my right side does it too, and so frequently I could not count how many times a day). - Dislocation of my fingers and thumbs, at random - Dislocating/subluxing my shoulders, in my sleep.  - Pain and weakness at the base of my neck, onto my spine. (Suspected cranio-cervical instability, by me, discussed with Doc, but totally unconfirmed)  - Dizziness associated with the neck pain (HUGE problem if driving for prolonged periods or sat doing training/looking at powerpoints/cinema)  - Dizziness upon standing up (*sung in my family as ‘hello, darkness, my old friend’ because it’s very common to us) - often causing me to then lower myself back to the ground/chair until I can see enough to try again  - Constant headaches - Visual difficulty, difficult to explain but like an out of focus camera, massively worse when my pain is high that day or I’m extremely tired  - Reflux (very regular, swallowing down mini-vomits has become a new normal for me) - Very poor healing of cuts etc - Oh the bruises, constant unexplainable bruising - NO POO aka constipation, and let’s be honest - nobody likes to be full of shit.  - Difficulties digesting, feeling totally overwhelmingly full at sometimes small bits of food (then bring on the regurgitation).  - Ankles and knees rolling inwards, and bending outwards in totally unnatural ways, and it hurts.  - EVERYTHING clunks and has to click back into a comfortable place on a position change.  - I sleep a lot, but I never feel rested. 

However my main overall points:

- I hurt. I really hurt. I rarely have a day or a few hours without pain, if I do I usually want to make the most of it - which then undoubtably leaves me in pain.  For people who don’t have constant chronic pain, it’s difficult to explain but it is utterly, totally exhausting. Under everything, all day, I’m fighting pain, and balancing it with what I need to do, and also fighting to avoid subluxations and dizziness and my balance issues. And with how pain killers will or won’t enable me to continue with my day.  - I am EXHAUSTED. All the time. I need 10 hours of sleep a night just to keep going, and I rarely manage more than 6. I work shifts etc but I really don’t think that’s what causes it, it’s all the time fighting unstable joints and continuing on top of pain - those whirring away underneath, fighting my body, it’s exhausting. And I really struggle to stay conscious. When I work 07:30-15:00, I NEED a 2+ hour nap or more when I get home just to have the energy to eat a meal. 

Management at the moment:

- Omeprazole - Codeine - Naproxen (or ibruprofen if it’s not too bad) - Paracetamol - Peptobismal// Rennie’s - Lots of fluids and salt in my diet to increase my blood pressure and try to reduce dizziness (not working) - SLEEP - Meals planned in, larger ones when I’m with people I’m comfortable to vomit around// not at work.  - Osteopathy - Physiotherapy (I’m in waiting actually, not yet started) - CBT privately  - Knee supports - Ankle supports  and my favourite - Hot water bottles - Heat bags (my favourite is a Sloth called Rufus) - Hot baths 

(Not a cure but really does help). 

And thankfully I have a hugely supportive family and boyfriend and friends, who accept my need for rest, who understand my pain as much as they can (sadly, Abby and Rosie have it too, so get it way more than I wish they understood), and who help a lot. 

However, I need to do something to help myself: I need to pace myself, and specifically, I’m talking about at work. 

I work in a children’s hospice, and I LOVE my job. Truly, I do. I love putting everything I have into a shift, and I find myself doing it all the time. I’m energetic, I’m a team player and I am constantly learning (all of which uses my energy). I often get given the very energetic mobile children to look after, because I can enjoy it and because I usually keep up (even though the after effects are bad). I work nights, and different day shifts. I work full time. Sometimes it isn’t physically hard (better days for me), but it is always mentally exhausting and emotionally taxing at times. 

My problem is, I’m putting ALL of my energies into work - and I have none left for me, for my family, for my boyfriend, for my friends -- and it isn’t healthy. 

Then, I feel guilty for not having energy left over for these other parts of my life. I travel to my boyfriend (and him to me) a lot, to my Uni friends sometimes, to Scotland and here and there. Often living out of a bag, because I feel guilty if I don’t manage to do these things. 

I have this terrible fear of missing out, and of letting people down. The two as a combination are terribly destructive to pacing myself: In my head, if I pace myself and don’t do the absolute maximum for everyone around me, I’m letting them down, if I do pace myself I might be missing out on experiences, and might be causing other people to miss out too - and if I don’t pace myself, my pain and fatigue will ensure I miss out anyway. 

All round, it’s shit. 

And I am very good at asking for help when it comes to learning at work, if I don’t know something, if I’m unsure I will always ask - but if it’s due to my body being incapable, or too exhausted to do something, I won’t. It goes on the back burner. I’ll cope, i’ll say, I’ll be fine.

I work with incredibly compassionate people, understanding people, and it is no fault of theirs that I push myself too far. I have talked to some about my EDS, and have received nothing but kindness.

But I do not get kindness from myself. 

And when something is an ‘invisible illness’ it’s very easy to convince yourself it’s in your head, and I constantly rebuke myself for being lazy, bone idle, a slob - and have to be told by others that I am not those things, but I have a chronic condition and pain and exhaustion feed each other if the aren’t managed. It’s a constant battle between feeling guilty, and like a fraud and between being so overcome by pain and exhaustion I can’t even feel. 

But I HATE it, and I feel it’s all still fairly new to me. A year ago these symptoms became worse, but even 6 months back they had nothing on the pain I experience now. And I am not ready. I don’t want it, and I don’t know how to stop it.  

When I’m at work, I don’t pace myself, because I’m too busy being totally in denial. 

When I’m at home, I’m so wracked with guilt over not doing nice things with everyone or feeling lazy because I’m exhausted, that I don’t actually give myself a break. 

So, after a long winded post about all of this, my message to myself is:

LEARN TO PACE YOURSELF Give yourself a break Talk to the kind people around you so you can do the best job possible at work without totally exhausting yourself and causing more pain Allow yourself to rest Look after your body as much as possible There’s no shame in having a chronic illness, so stop beating yourself up. 

For those who are only just learning about my issues with this, I leave you a few pictures explaining EDS a little: 

[clinically-chronically]

Excerpts were taken from the Ehlers-danlos Society's official website.

This has been a long journey with finding answers and going to not one but now 4 different doctors to find the cause of both my intense headaches/migraines, to furthering in declining health, mobility, Hearing and vision loss, and neurological function. It's crucial that us EDS patients go to physicians that know our condition.

My current Neurosurgeon studied under the top Neurosurgeon in the chiari Institute in New York. One of the top Neurosurgeons that work very closely and know very well, with EDS. He even did a speech for the Chiari and Springomyelia foundation about spinal instability.

Needless to say, we did find concrete evidence and answers to my decline in neurological and even mobility function. Something that all of the spine specialists and even one other Neurosurgeon had missed completely because they didn't know exactly what to look for. Cranio-Cervical and Atlanto-Axial instability. Mine is very much pathological and fits exactly how I feel and have been feeling.

The direct cause of this; Ehlers-Danlos Syndrome.

CRASH CORSE: EDS, effects collagen, defective collagen = lose ligaments, lose ligaments caused my spine to be quite unstable from my skull through the second vertebrae, compressing my spinal cord and surrounding nerves.

So, what do we do?

We are doing a Skull to C2 spinal fusion. A spinal fusion is where we, as it says, fuse the spine. However, with rods, plates, screws, bone graph, etc. This will be about a 4 hour surgery. This will be my biggest and first neurosurgery. However, this can very easily, give me some and hopefully a lot of my mobility back, reduce headaches and migraines, reduce or eliminate my neurological deficits, possibly improve my motility in my gut, possibly improve my dysautonomia and hopefully improve my quality of life.

[spoonietimelordy]

Oh he just said that those were also the symptoms of cranio-cervical instability which I have. Thanks God it's not a new thing I need to get check out

Huuuuuuum nah it's just migraines, right?