Diagnosing Chiari

So you suspect you have Chiari malformation, what do you do?
First you must see your general practitioner you trust- bring relevant literature as most doctors do not know of this condition so they wont think of it. Ask for a referral to a neurologist who specialises in these conditions.

Once you get in to see your neurologist you will be asked your full medical history (write this down before hand as stress can make you forget important stuff). They will then perform basic neurological tests. These do not hurt and assess basic co ordination, walking, sensation, etc, so they can identify the problem. Some neurologist may not be to willing to acknowledge this condition so requesting an MRI is worth trying. An MRI is basically the only definitive medical diagnostic available for this condition and is highly required. Keep pushing till you get one.

Request a brain (to check for chiari) and full spine (this will save time and show if you have syringomyelia)MRI. A time will be booked and you will often be asked to fast before your MRI. This is done because it can make people feel nauseous and sometimes the need to inject a drug called contrast (a compound injected into your vein which helps give clearer and more sharp images). If you have issues with claustrophobia talk to the MRI technician before hand as there are many ways to address this. You will also have to remove all jewelry as metal and MRI’s don’t mix well.

During the MRI you have your head locked into place by a plastic head guard to prevent movement and covered with a sheet as its cold. You will also get earplugs, as MRI’s are very loud and sound like jackhammers.

Before you go in ask if they are able to copy your scans onto a CD. Most places will do this free of charge and only takes a few minutes. This will save you time and money later if you need to send off scans. You will then either have to wait for a few hours to pick up the radiographer report or they will be sent to your neurologist – you will be informed on the day.

You will then go back to your neurologist for the follow up appointment who will read the scans and report and make a diagnosis based on that and your medical history. If you are diagnosed then a referral to a neurosurgeon is often the next step so they can discuss possible surgical interventions.

As this time in your life will be very emotional recording your appointments or bringing someone else along can be very helpful for remembering information during this time.