I had my appointment at Duke. The NL did a much more thorough work-up than I had before. When he looked at my two prior MRI's (brain and cervical), he said he saw quite a bit of overcrowding and he ordered a CINE MRI and referred me to a NS at Duke. The irony is that the MRI that showed the most overcrowding was the cervical MRI which had the lower measurement of my herniation. He said that he believes my symptoms are Chiari related...so I am hopeful that there is help ahead. Thank you for all of your support and prayers...I will have the CINE in the next couple of day and my NS appointment is on April 7.
Rachel
Hi Pam,
Yes I am having symptoms. That's what got them to order the MRI. Extreme numbness, burning in right side arm, hand, leg, foot. Extreme weakness in right leg where it will just start shaking and give out and I fall straight down, unless someone catches me. They prescribed prednisone thinking it may be autoimmune, but I've been on it for 5 days and symptoms are the same. Everything came on quickly after a bad case of bronchitis about a month ago...which is really the only out of the blue thing for me. Prior to...I was super healthy, running, eating well, raising two beautiful kids, successful career...etc, etc.... this came out of the blue.
Thanks for both of your input. You guys have responded to previous questions I've had on the forum, which I just discovered Thank GOD! This truly is a great community of support.
I have an appointment at Duke on Wednesday...so we'll see.
Rachel
Hello, The size of the herniation is not important anyway. It is whether or not there is crowding or CSF blockage. As far as MRI changing...it depends on who is measuring and the views they are measuring from. So what you should do at this point is find a Chiari specialist. Are you having symptoms now? There is a list here in the forum of docs other members have used and liked.
Keep us posted.
Pam
This is typical of the confusion surrounding a Chiari DX and why it is so important to have a NS who understands CM.
Cerebellar ectopia is a term used by radiologists to describe cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation. The currently accepted radiographic definition for a Chiari malformation is that cerebellar tonsils lie at least 5mm below the level of the foramen magnum. Some clinicians have reported that some patients appear to experience symptoms consistent with a Chiari malformation without radiographic evidence of tonsillar herniation. Sometimes these patients are described as having a 'Chiari [type] 0