What are the necessary tests that should be ordered?

General
1

I am seeing a NS for the first time even though I was diagnosed 5 years ago. I have only had MRIs done of my brain. I have appointments with a few doctors and in talking to their registration teams, I asked about what kind of tests the doctor might want to order for a CM patient. Their response was that they wouldn’t order anything more than an MRI of my brain (which I’ve had done already) or basic lab panels.


From all my research, I was under the impression that other tests should be ordered to determine or rule out any other issues like Syrinx, CSF leaks, etc. The only office that told me they would run a battery of tests is an actual Chiari center.


My question is what are the usual tests or images that should be done before deciding how to move forward with treatment? Just an MRI of the brain? What about the Spine? Do most people get a Cine MRI done to determine any CSF issues? If not, what is the best test or way to determine CSF concerns?

I’m also wondering if what kind of tests the doctor might order could be an indication of a surgeon who truly specializes in Chiari versus just a general surgeon who does decompression.


I know once I have my consultations and discuss my current MRI and my symptoms we can come up with a plan together, but I just want to be well-informed about the tests that I really should have done before making my decision on proceeding with surgery or not. I don’t want to have more tests done than necessary, but I definitely want the testing to be as comprehensive as necessary for a CM patient.

Thanks!

2

I'm not sure what a surgeon "who truly specializes in Chiari" is. If you are looking for a a qualified and experienced physician. great, but often that means a surgeon who believes he cure a range of symptoms with a surgery who's purpose is far more limited. While these guys offer a lot of hope, it doesn't often pan oput. They far often offer surgery when others won't and because of that are thought to be superior.

Full time Chiari Centers are frequently independent practice that exist for profit. It doesn't mean they don't do good work, but it does mean they maximize every profit opportunity. A full workup and surgery through one of these centers averges between 6 and 100 thousand dollars as opposed to 20 - 40 thousand at an affiliated medical center. The AANS (American Association of Neurological Surgeons) recognizes the following tests:

Brainstem auditory evoked potential (BAER): An electrical test to examine the function of the hearing apparatus and brainstem connections. This is used to determine if the brainstem is working properly.

Computed tomography scan (CT or CAT scan): A diagnostic test that creates an image by computer reconstruction of x-rays; it is particularly good at defining the size of the cerebral ventricles and showing an obvious blockage. It is less effective for analysis of the posterior fossa or the spinal cord.

Magnetic resonance imaging (MRI): A diagnostic test that produces three-dimensional images of body structures using magnetic fields and computer technology. It can provide an accurate view of the brain, cerebellum and the spinal cord, is very good at defining the extent of malformations, and distinguishing progression. The MRI provides more information than the CT scan when analyzing the back of the brain and spinal cord, and is usually the preferred test.

Myleogram: An x-ray of the spinal canal following injection of a contrast material into the CSF space; can show pressure on the spinal cord or nerves due to malformations. This test is performed less frequently now.

Somatosensory evoked potentials (SSEP): An electrical test of the nerves involved in sensation, which gives some information about peripheral nerve, spinal cord, and brain function.

You will notice the Cine MRI is not listed. It is a controversial test. The diagnoses and surgical decisions are generally made as a medical diagnoses once a good MRI is in hand. By medical diagnoses I mean physical exam and symptoms. This is where the skill of your team comes in. There is no substitute for this. Brain surgery is a big deal and choosing the right surgeon is huge. There are lots of criteria to go by beyond what tests he runs.

There are a lot of patient advocacy associations out there. Very few of them are without bias be it with the associated physicians if any, philosophy, or publications.

The AANS recommends these:

American Syringomyelia Alliance Project Inc.
C&S Patient Education Foundation
The World Arnold Chiari Malformation Association

3

Thanks for the informative response, TJ1. Those are the tests that I have come up with in my research. Running all of those would obviously be the most comprehensive approach, but do most neurosurgeons order all of those?

I'm wondering from actual patients how many of you had ALL of these tests? Do most NS make their recommendations based off of only an MRI of the brain and symptoms? What are the most common tests that NS have ordered for you guys?

I obviously understand that what a NS orders is based off of a thorough exam of each patient, but I'm just curious to know from you guys that have actually gone through the process leading up to treatment (whether surgical or not), what are the tests that you had done?

Like I said a Chiari Center is the only office that mentioned anything other than an MRI while the other NS stated they generally only use an MRI of the brain, BUT that worries me because that indicates, in my opinion, that they won't be assessing the CSF which is a worry for me based off of my symptoms.