ER Neur says CM1 at CT scan & ER Doc says doesnt meet strict criteria for CM1?

[margomarie777]

I went to ER the first time after being rear ended and they called in a Neurosurgeon who ran CT and tests and said its CM1    I got sick again went back to ER and pleaded for MRI (i have no insurance so I had to wait till it was horrible and go to ER)  Today I picked up the MRI report and it says 4.3 mm of cerebellar tonsillar ectopia and because just over 4mm below the cerebellar tonsils this finding fails to meet the strict criteria for Chiari 1 Malformation.

I am confused and wondering what to do because the ER doc told me that he wasnt familiar with Chiari M 1 when I saw him.  Do I try to show MRI to the ER Neurosurgeon that originally saw me?

Any input is greatly appreciated because my life has changed so much I dont know what to do.

[pamk5]

Hello and welcome!  Unfortunately this is what most of us go thru.  Alot of docs just dont know about Chiari.  The size of the herniation isnt important it is whether or not you have a blockage of csf fluid or crowding.  To know this you will need some additional tests like a Cine MRI.  You also need an MRI of your spine to make sure there is no syringomyelia.  Alot of us, including myself were diagnosed after an accident so you are not alone.  The size of the herniation can also vary based on who measures it and what views they are using.  

As Stacey said it will be very important for you to find a specialist who focuses his practice on Chiari.  It may be hard without insurance to get the treatment that you need.  Depending on your financial situation you may be able to qualify for medicaid?  Or contact the department of insurance in your state about the state risk pool, or whatever other options may be available to you.  Things vary so much by state.  

Again welcome and I hope you find the treatment that you need.  With this illness we really have to push sometimes.  Is so hard to find docs that know much.  

Pam

[Spaceystac]

Hi welcome to the forum, sorry to hear you have this issue to deal with.
  This is a topic of debate, the "criteria for Chiari" and I am sorry you to are caught in the middle of the debate. You need to send your reports and information to a Chiari Specialist, which you can find a list of here on the forum.
Many doctors are very uneducated on this topic, and more people everyday are learning about their conditions due to the advancements of technology and the use of MRI's. That is a good thing that we are learning of our conditions with the advancements, but it seems the doctors arn't updating their own knowledge.  
I am sorry to hear your life has changed from all of this but you will find that many of the other people on this forum are in the same position. My life is not the same and I am glad we have this forum to communicate these things on.    You are headed in the right direction, just try to seek a specialist Neurosurgeon, but start with the one you saw first but dont be discouraged if you have to find a second opinion, as many of the people with this condition do.  Where are you located? Sometimes you can find a specialist that is not too far from you.   Stacey