Im new to all of this and very confused

Hi, i got told yesterday that i have a type 1 chiari malformation.
ive spent the last year telling my GP's that i dont feel right. like i dont feel "with it"

its says on my MRI report that my cerebellar tonsils descend 12mm below the foramen magnum. there is some reduction of CSF around the medulla at the level of the foramen magnum. and no associated syrinx.

extreme fatigue. feeling weak. pins/needles in my hands. flashing in my left eye (with intense pain behind the eye). nausea. bladder incontinence. IBS with bowel urgency. and ive always been clumsy and rubbish balance all my life
i get intense aching in my thighs, and i guess i never realised until now that i do have neck and shoulder stiffness from time to time (but presumed it was due to having a toddler and being tired)

the biggest symptom that affects my day to day life is the "not being with it" like i cant concentrate or focus properly on things i would otherwise be able to do

i have been referred to see an neurosurgeon. and im struggling to understand whats going on really.
some help/advice would be greatly appreciated!


1st off..WELCOME to the group!!!

This is just my own experiences and opinion....There are folks with Chiari, though rare, that do not get the classic "Chiari head ache"..sounds like you are one o them.

However, that being said..from what you wrote about your symptoms ..they are all symptoms that I myself suffer from...minus the bowel issue that you are dealing with.

My herniation was only 5mm and that is considered small...yIou have a 12 mm me that is sizable and with all your symptoms i am glad that you have been told to see a neurosurgeon.

I had surgery almost 4 yrs ago and have had some improvement..but you need to know that the operation is not a cure, but a treatment....the goal of the surgery from what I was told is to restore CSF flow and the progression of symptoms.

One of the main causes of a syrinx is Chiari due to the goofed up CSF is great that you do not have a syrinx and

you want to avoid getting one in the future.

did you make appt yet for the surgeon?? Pls keep us updated.



hi lori! thanks so much for replying. :)
im still waiting to hear about an appt - but the doc does chiari clinics once a month (on the NHS). there is one on monday 18th and the next is the 20th july.
i doubt i can get on mondays clinic, so will probably have to wait until july. which is a bummer because i want somebody medical to tell me all the ABC's about it and my prognosis etc..

my health insurance will provide benefit for me to see somebody - but the available private neurosurgeon isnt available until the 12th july! lol.. and i dont even know if he specialises in chiari. where as i know the NHS neuro guy specialises in chiari malformations. so i think i will wait on the NHS.

my mri report also states - "there is some reduction in the volume of CSF around the medulla at the level of the foramen magnum. the dorsal column nuclei however do not appear to be displaced downwards and the cerebellar tonsils maintain a rather rounded appearance"

would anyone know if this is good/bad?