Had my 1st visit with 2nd NS today

[shortyw3kids]

Ok today's appt finished better than it started.

It started with the NS saying well your Brain MRI "only shows" 7mm herniation, that he didn't think I fit the criteria for surgery. Then he went into the whole dialogue of what the decompression surgery entails.

Once he let me and my husband talk, he decided lets schedule a Cervical MRI and see what that shows.

baby step in right direction :)

[pamk5]

It is possible to have this doc to order the rest of the MRI's you need?  Full spine and Cine MRI?  While you are getting approval for one it may get you some answers quicker if you can have all at one time.  Then when you get to another NS you will at least have them out of the way and know for sure if you have a syrinx or not.  Or if you have blockage.  

Just a thought!

Pam

[shortyw3kids]

Pam and Carolyn,

I agree with both of you, I doubt this NS is a Chiari specialist. I am going to still keep looking to find one.

Just waiting for the insurance to approve the Cervical MRI and go from there.

[*Stormy*]

Hello!

I agree with Pam, whether or not you have surgery should not be determined by the size of your herniation. Plus the fact that you are over the 5mm mark anyway!

I would think about getting a third opinion from someone that specializes with Chiari. Usually, when a NS writes you off with a statement like that, you are probably not going to get too far with him.

The cervical MRI in a lot of ways does show the herniation and if there is crowding a lot better than a brain one does. So I hope that you get that done soon..let us know how it goes!

Carolyn

[pamk5]

Hello.  Well the issue here is that the size of the herniation is not important.  It is whether or not you have crowding and blockage of CSF flow.  To find this out you need a Cine Mri.  A cervical spine MRI is needed but if he is checking for a Syrinx then the entire spine needs to be scanned.  Most of the time they are in the Cspine but they can occur in thoracic or lumbar spine too. I would recommend that you find a Chiari specialist.  I say this because I have heard the same thing from a doc who sees chiari patients too but doesnt specialize. I have an 11mm herniation but I also have a partial blockage of csf flow.   It has taken me months and months to get the necessary tests done because I didnt follow the above advice when I was first diagnosed.  It causes alot of unnecessary stress and frustration.  I am not sure how they can make the statement you are not a surgical candidate before they have all the test results.  Sounds as though he is basing everything on the size of the herniation which if that is the case everything I have read says anything over 5mm is significant.  Are you having symptoms?  Are they affecting your life?  I am not a doctor but I have been through all the above and I hate it when we cant get the right advice or treatment.  Hang in there.  

Pam