Anyone else have cranio cervical instability?

[quote AliceBreaksTheLookingGlass]@Villanelle17 how, when & by whom was your CCI diagnosed? What prognosis did they give & what guidance were you offered?

CCI (& resultant surgery) has become incredibly “trendy” - for want of a better word - despite the fact that the diagnostic criteria in terms of measurements looked for on scans are basically What One Random Surgeon (who doesn’t accept insurance & makes patients sign NDAs) Reckoned.

It is an absolute myth that the NHS doesn’t treat CCI. What it doesn’t do is leap into doing surgery that will, in the case of hypermobile patients, eventually lead to their needing full spinal fusions. (That’s without even considering other issues with doing surgery on patients with hEDS. Clearly surgery should never be undertaken lightly; but as I’m sure you’re aware, with hEDS it should be avoided unless there is no other choice.)

It’s an unusual person with hEDS [& spinal involvement] who doesn’t have some degree of CCI purely because it’s about ligament laxity. Physiotherapy is - as with all other wonky joints - what will help. Any use of neck braces - even a soft collar - needs to be with specialist guidance otherwise it causes harm.

If an individual with hEDS presents with actual c-spine damage (or of course Chiari malformation) that would benefit from surgical intervention, including fusion, the NHS will offer it to them. Fusion was discussed with me a couple of years ago when there were concerns about the extent & speed of the deterioration of my c-spine; but living with the issues caused by my spine continues to be a better & safer option (because I am still able to walk - even if it’s not that far [though partly that’s shielding putting my functional ability through the floor] - & I have only very minor continence issues).

I am hugely concerned that you believe you are being left to die; & that you are afraid this could cause a stroke or paralyse you.

If you look honestly & objectively at the FB Group, is being a member actually helpful to you? Is there a Sick Olympics feel to the posts - & perhaps more especially, how the posts are engaged with? An alarming amount of social media related to [h]EDS is part of a quite toxic culture, reminiscent of groups for people with eating disorders in the early noughties. People wanting to be The Sickest; to have had most hospital admissions; to be considered Rare & Special - & in these new groups it’s not only feeding tubes that are status symbols: mobility aids; housing adaptations; central lines… They can be INCREDIBLY damaging spaces, & if any of that is true of the group in question, please at least reconsider your membership of it.

@LittleGreyFluffyCat
Please see the above, which I hope you’ll find helpful.
It is neuro input you’d require - they may also be the correct Team for your other symptoms, but I wouldn’t want to leap to that given you’ve just mentioned bits of your body & not what they’re [not] doing.[/quote]
I was diagnosed 4 years ago after an upright mri scan. I have very bad aai, cci and instability at every level of my neck. I have a retroflexed ondontoid peg, which is is tilted to the left. My diagnosis of cci, aai and brain stem compression has been confirmed my 3 UK neurosurgeons and 2 US neurosurgeons.
I've got worse since I was diagnosed and honestly my quality of life is so bad I'd rather not be here. It's disgusting just to be left without any help when my head literally feels like it's going to fall off.
I am at risk of death, paralysis and stroke. I have it in writing by a UK neurosurgeon and my gp has kept it on my file. Unfortunately, the Neurosurgeon who said I should get skull to c2 fusion on the nhs, was then told that someone else, Mr Casey, would be taking over all eds/cci cases and he said nothing was wrong with my neck. Even though just before I saw him, I saw his colleague who said again I need a fusion and also have flattening of the base of my skull.
So I have to strongly disagree with you. I find the Facebook groups very helpful and have made many friends who have kept me going. I don't go on them all the time as obviously seeing a lot of people suffering/deteriorating isn't great for mental health.
No other condition is neglected like ehlers danlos syndrome, a quote by Prof Rodney Grahame, which rings very true.
I find your dismissive attitude offensive when I've been diagnosed and told surgery is my only option. Physio did nothing!
Dr Henderson, Dr Bolagnese, Mr Anwar, Mr Timothy and another UK neurosurgeon whose name I can't remember.
Maybe a small number of people are jumping on it, but it's nothing like the eating disorders. I wouldn't wish cci on my worst enemy!

I'm part of a specific cci group not heds. I also have ICR and need total jaw replacement. I also have an irregular heart beat and a leaky heart valve. I also have a scoliosis fusion. I am in agony everyday with awful nervous system problems, so I don't appreciate someone trying to minimise what I experience.