Went to pediatric neurosurgeon today and.so very unhappy. It sounds like so far she thinks my daughter is asymptomatic which sounds good but she is referring us to Gillette Children’s for a Cine MRI. There is still some thought that flow may be restricted. She seems to think her numb arms are unrelated and did not even address her numb legs. She was very cold and was suppose to be a children’s doctor. She also feels.her light sensitivity is unrelated but could not tell what it was other than too much screen time. Did not address any of our concerns. Not.sure where to go from here. Should we schedule a full appt at Gillette?
I am new the this site and check in weekly. When I read what you wrote I was saddened to see there were no responses from your February 2017 post.
I am hoping you found resolve for your daughter’s situation and I feel my post may not be of any good to you now, but I will gladly respond.
I had a CINE MRI and it was the deciding factor for me to pursue something being done about the Chiari I. There were posterior flow voids and I had to carefully read through the copy of the written report I had to request.
Flow voids can affect the long term health of the brain and I was found to have more crowding at the base of the brain than the CINE MRI had shown; the brain stem was crowded and part of the C-1 had to be removed.
I had been rejected by a very rude neurosurgeon and then went on to another that had come to my area recently from Ohio State University, Dr. Karas. He was my savior and I am very grateful for what he did to make my life the best it has ever been in decades.
I had one severe migraine at age 5 and felt weak and had body aches from age 11, but I did not find I had Chiari I until I was age 51. I was losing motor functions, vision issues, coordination problems, spinal pain, leg weakness, left and right movement issues, my penmanship was awful, and I was losing the will to live.
I worked up to the day before my surgery and after a couple of times in intensive care I recovered fully in a years time and decided to do what I had dreamed of for a long time; I went to college at age 53 and graduated with honors.
Chiari can be dealt with and life does go on it is just that the journey is often not a pleasant one. Perseverance does pay.
Hope all is well. Sincerely, 9yearspostop
If you are not happy with any MD appointment, I would always suggest getting another opinion.
In terms of the cine MRI, I want to clarify some concerns.
The cine MRI is looking for spinal fluid flow somewhere. In the case of Chiari patients, that is flow at the craniovertebral junction(where the Chiari is). Some MDs use cine MRIs to help decide about the severity of the Chiari(this is a controversial point for many).
Flow voids are usually used to describe the absence of signal(hence the “void”) where blood vessels are seen. The way in which an MRI acquires data is to create a large magnetic field, get all the electrons spinning in the same direction, and gather data on the rate at which the electrons return to normal activity. Therefore, if the electrons are no longer in the field of view(the blood flow has moved them out of the field, creating a void), there is a black spot where the blood vessel should be. Most vascular flow voids are normal(and the context in which the term is used is important).
A cine MRI as you describe is meant specifically to look spinal fluid flow, not blood flow.
Since there is enough variability with Chiari work-ups, you may want to ask that your daughter’s films and history be reviewed by whomever will be the additional opinion(you mention Gillette). The MDs there may confirm they want the cine MRI or state they don’t use them.