I've had 3 MRIs with 3 different Chiari measurements...The first MRI was 12/24/12 with the NS measuring a 7mm herniation. Second MRI with a measurement of 1mm (radiologist report NO Chiari) and a 3rd MRI with a measurement of 3mm. Has anyone else had this happen???
The first MRI was on an open MRI and my new NS said that they aren't as useful as a closed MRI...He can't explain why I have trouble getting a deep breath, pain in my back or why I have painful and tingly feet either.
Open MRI machines aren't as reliable. Usually on a measurement for a herniation everyone that reads it will measure it differently. Why I don't know. There are markers to go by. I have also been told by my NS that the angle your head is in the film has a lot to do with measurement. I always recommend if you have an MRI and have CM to specifically ask that a Neurologic Radiologist reads the films. My NS doesn't want anyone else to read his films but he has over 50 years experience.
The 2nd NS said the same thing about an Open MRI...And I mentioned to him that my head position may have been different for that particular study, more of an extension in my neck. He dismissed the remark like it wouldn't make a difference...though he is ordering a flexion/extension x-ray to see if I have a shift at c5/6. I have a herniation at c 5/6 left side. No left neck pain only right with bi-lateral deficits in my arms and hands. Worse on the right with neck pain on the right. Other symptoms nausea, dizziness, foot pain and tingling. Arm pain has improved these last few weeks, thank God! I was excruciating for 4 weeks! This particular NS told me that if it was Chiari the symptoms would not come and go or change locations. That my flow looks good and my right sided arm, neck and head pain were most likely caused by the left side c-spine herniation. He was baffled by my other symptoms (shortness of breath, choking at night, the nausea, dizziness, and feet). He said since I didn't have syrinx the Chiari wouldn't be causing those problems.
This particular NS was only covered by my insurance as a 'non-network' Doctor. So I'm seeing a 3rd NS in a little over a week. I think I'll just get the 5-6 fused and hope for the best!
A HA! Yea, but you were sitting up for the open MRI - no? It is this funny thing called gravity that is ignored in the diagnostic dynamics of Chiari. That is to say, the position of your cerebellar tonsils is not static. When we lay down, like in a conventional MRI, our cerebellum settles into the back into the posterior fossa our posterior fossa. However, when we sit up, gravity pulls it forward and down (even if only slightly so) ... it can't not do so. Hence, the open MRI exhibits where your cerebellum rests while sitting or standing even. Other than this little explanation ... I am not sure what to say. It would be logical for the medical community to research the difference that using an open MRI makes but I have not read anything to that affect. Also, the position of your head in a conventional MRI can affect the measurement of your cerebellar tonsillar descent. IF you head was completely neutral, it could be measured at Omm ... if cocked back, it would measure at 3mm ... etc. With that said, refer to the NS list on this site for someone who might be more knowledgeable of Chiari in your area. My chiari certainly caused pain and numbness in my extremities but if you do not have the headaches ... it could be a bunch of other things too. I would be interestred in the NS's reasoning regarding the open MRI not being "as useful" since we spend most of our waking hours sitting or standing. Perhaps there is more proportional distortion on an MRI that I am not familiar with.
I was actually laying down for the open MRI but I didn't have as much under the back of my head as with the closed MRI. I had read the same thing that sitting or standing would increase the measurement...So I mentioned that to the NS and he said that because the fat content is so high in a brain it actually floats up. Which is exactly the opposite of what I have read. I wish I could send an image but I just shipped my discs off to the new NS.
There's definitely crowding, but the NS said the magna cistern had good flow. This particular NS has Chiari Malformations listed as one of his specialties. I think thought he's more old school and likes to go with the MRI as opposed to the symptoms. His diagnosis is that my left-sided c5-6 herniation is causing all my right sided problems of pain and tingling (arms, shoulders, and hands).
However he can't explain the things that don't fit into that diagnosis, like the painful and tingly feet, shortness of breath, pain in my mid-back, nausea, or dizziness. He told me my headaches were also caused by the c-spine herniation, especially the back of head pain.
I am very hopeful that a c5-6 fusion does take care of all of it! 'Cause I really don't want decompression surgery!!! I just don't want to do one surgery and then have them go OOPS, sorry we fixed the wrong problem. ;-)
This is my second bout with the herniation at c5-6. It took 2 years to heal the first time and I had to be very careful about re-aggravating it. That was in 2006. Now the herniation is bigger and I have bone spurs too. The herniation this time came out of the blue October 31st, 2012. I can honestly say by the second day I was in the worse pain of my life. It lasted about 3 days and improved only to get worse again during the holidays. Knew something was different from the first time when I couldn't tip my head back or look down without pain. I'm just really tired of not being able to do anything without the pain. Today I was having a 'good' day and decided to go to the driving range to hit a few balls...WOW, was that a mistake. But I had to test and see what would happen. I'm sick of sitting on the sidelines just waiting for the pain to get bad again for no reason...I already have a congenital fusion at c7-t1 which probably added to the DDD of my cervical spine.
If I could just snap my fingers and make it all go away I would. The thought of any surgery makes me sick. That being said I think I am fast approaching the 'last' resort...because not being able to live an active life is going to kill me.
I agree with finding a Dr that has a diagnosis that encompasses more than 50% of my symptoms is the answer. Maybe the 3rd one will be the charm!