New to forum

[elizac29]

Hello :-) I was just diagnosed today with Chiari malformation. I had never heard of this until now and have spent all evening googling till I found this forum. I have an MRI coming up and would like to know what to expect when I see the neurosurgeon. What sort of questions should I be asking?
Also, my CT scan said 'tonsils protrude into the foramen magnum by at least 9mm''. What does that mean? Is that bad?
Any and all feedback is appreciated!

[irislita]

hi and welcome here.Selma said just verything important. this forum is a big help.wishing u the best.keep us updated

[selmaS]

  Hi and welcome to the Chiari forum.

U will find Drs that look to the size of herniation to determine if ur chiari is mild or severe, instead of looking at how it is affecting u, it really is not the length but the width and if it is creating a CSF obstruction that is of the most concern. A CINE MRI will help determine if an obstruct exists....

U will also want them to look at ur complete spine to rule out a syrinx, the name of the condition is syringomyelia....and many Drs only check the cervical spine when they can form newhere in the spine...plus, by doing the complete spine u r also ruling out disk issues, and tethered cord.

Then they should check u for ICP, POTS, sleep apnea, ehlers-danlos....etc.....

The tonsila protruding mean they r in a space they do not belong, and if they r wide, they may cause an obstruction of CSF flow or compression of nerves, this is what causes the chiari symptoms.....

Finding the right Dr is key.....we do have a list of Drs for use to research, but it is not meant as a referral.....

Keep asking questions, and know, u r not alone.