Anyone experienced Chiari?? Please help!

[headachey3]

Hi.

I was recently old I have a small chiari malformation. There is apparently some debate around the threshold for diagnosis and treatment. The general consensus is that a 5mm herniation is required for diagnosis, but others say 3mm and it seems to be an individual thing ie some people will be symptomatic with lower herniation than others.

mine is around 4mm and apparently too small for any sort of treatment or management. It’s still a debated diagnosis for me because of its size. But I have horrendous symptoms with it- agonising headaches (very typical Chiari headache characteristics) sickness, arm and leg weakness and a variety of other symptoms.

I’ve been told my symptoms may be caused by Chiari but may not as the herniation is still relatively small. I’ve been told just to live with it and take painkillers as required but I would be living off them if I did that.

I just don’t know what to do from here

does anyone have any advice or experience they could offer?

Apologies- giving this a very hopeful bump x

Do you have Facebook? There's an active and supportive group on there called Chari and Syringomyelia Support UK. You'll have to request to join first.

I cant really help except to agree that that Facebook group is very good.

I didn't find out I had Chiari until after it was fixed!I had a tethered spinal cord and had surgery to fix it and I mentioned to my neurosurgeon afterwards that my severe daily headaches had disappeared and she checked my MRI and noticed the chiari then. I say "fixed" but it’s still there but just not causing the problems it once was.

Can you push to get a second opinion?

My daughter has one.
Hers is also 4mm, she also had scoliosis and the two often go together.
She had the scoliosis treated but not the Chiari, she gets headaches and blurred vision but the neurosurgeon said she doesn't meet the threshold for treatment.
She takes amitriptyline and melatonin.

Did her neurosurgeon by any chance say what the threshold was? I’m so sorry she’s going through it aswell. x

Also thank you very much everyone for the fb page recommendation too x

My dd has a chiari too. I' fairly sure her herniation is about 11mm! She doesn't have any symptoms though - we only discovered it as she was having an mri for something else!

She has an mri every two years to keep and eye on it. Sometimes they are progressive but only about 18% of chiaris get worse over time.

Oh my goodness I'm so sorry you're going through this. I don't have any personal experience beyond when I was on the neuro ward with my son, loads of kids were in for them to get them fixed with surgery which did seem a magic cure. The NHS threshold is so harsh, and doesn't always take into account chronic pain if they deem it 'liveable'. Would you be able to get a private consultation? If you're in Scotland then let me know, I can PM you details of an excellent private neurosurgeon. Best of luck xx

its widely agreed now that the size of the herniation has little correlation with the symptoms! Someone could have a big herniation and have not many symptoms and vice versa

there’s also ‘chiari 0’ talked about for smaller herniations

are you being referred to a neurosurgeon?
you need to speak to a neurosurgeon, preferably one that specialises in chiari. There is very little point in my experience trying to talk to a neurologist or gp about this condition. (apart from medication conversations with neurologists maybe)

they don’t understand this quite complex condition and can really downplay it, making you feel worse!

nhs waits are super long at the moment :(

definitely helpful to join Facebook groups. Also like Chiari Malformation UK. It’s reassuring to feel like others understand

She said the threshold is 5mm but her symptoms are manageable so they didn’t feel like surgery was the way to go.
Also if she had the Chiori treated it would have delayed her scoliosis surgery and that was more urgent. Her spine was an S shape and curved at nearly 70°