Newly diagnosed and headed to neurologist

[trashanda]

I am 43 years old, and have been having all of these symptoms since I was about 34.  I am seriously crying right now because I have almost every symptom of Chiari Malformation.  No one could help me or believed me until I had this MRI this past Monday.  I can barely see now, have horrible pain in my neck, shoulders, and head.  I cannot recall words quite often (it's really embarrassing), and here recently, my dizziness is constant.  I have been ashamed of the fact that I have pee "accidents" ( that I could not control at all).  What should I expect at my first neurologist appointment?  If he/she does not know about Chiari Malformation, should I find one that does?  I'm so scared I'm going to break down if this neurologist treats me like I'm imagining all of this again.

[selmaS]

Hi and welcome to the  Chiari forum.

There are many Drs that may think they know Chiari and may say they can handle it, but educate yourself first so you will know when you have the right Dr and having the right Dr is KEY!!!!

Since you are experiencing bladder issues you may have a syrinx, Syringomyelia, these form when there is an obstruction to CSF flow....to know for sure what is going on you should have a Brain MRI, cervical spine MRI, thoracic and Lumbar spine MRI AND a CINE MRI.

The Drs should test and rule out several related and non related conditions before talking surgery....keep in mind Chiari is NOT the herniation BUT the malformation of the skull making the area too small and this creates the herniation.

To give you some hope, I had surgery in '09 and I am doing better today than when I was younger.....it took a while for me to heal and get to this point, but totally worth it for me.

Please continue to ask questions and I will try to answer the best I can....Just know you are not alone.