Chiari Malformation

[Coyotesheaven]

This is one of those diagnoses I have been considering for a long time. I have had the tests and examinations to be evaluated for it, but it seems that neurologists and doctors have repeatedly forgotten to look for it in the MRI and don't ever get back to me on the answer. I certainly cannot read MRI's, but from what I saw there did seem to be some kind of 'crowding' or things looked like a can of sardines in the area where chiari defects occur, but no obvious dropping of the cerebellum below its normal position.

For those who don't know what this is, here is some basic info:

http://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/dxc-20249662

Anyway, the symptoms part explains me all too well. I have migraine-like episodes daily (they don't usually come as the headaches but as inner ear disturbances or other auras), bad muscle tension and infrequent numbness right in the area where chiari defects occur, and my hearing also goes through changes every day. These symptoms are usually not spontaneous and are often exacerbated by coughing, straining, bending over, doing sudden movements with my muscles, oh and especially being exposed to shockwaves like sitting down too fast, running, going over bumps on a road, etc. This is all consistent with a chiari defect.

I guess my point of this post is...are there any chiari sufferers out there on this forum? Has anyone considered this as an explanation for their tinnitus?

 

[Jkph75]

You need a upright MRI completed to be sure about this.

I really think you should start using a hearing test app to monitor changes in your hearing. You are right that it isn't accurate, but if you take it in the same place it is reliable. This will help you see if there is a loss and how big it might be.

 

[Coyotesheaven]

@Jkph75

Already had an MRI done. The professionals just need to actually rule this out like I told them too.

 

[Jkph75]

@Jkph75

Already had an MRI done. The professionals just need to actually rule this out like I told them too.

An upright MRI machine is different than a regular one and can show Chiari malformation much better than a standard MRI.

 

[Gman]

@Jkph75 I had a normal laying down MRI which revealed I have a 3mm cerebellum herniation. So it would probably be more if I do a standing up one? I get most of the symptoms.
I saw a neurosurgeon, who had to call a radiologist for advice on Chiari (who probably Wikipedia'd it) and when told it has to be 5mm for a diagnosis, completely dismissed it as stress. He even told my chiropractor to do whatever he wants to my neck, because it's not a full diagnosis. Really got to question the professionalism of these medical "experts".

 

[nickywb9]

Hello All in this thread. I had my diagnosis and decompression surgery back in 2015. My understanding is now the actual size of the herniation isn't necessarily what causes the symptoms the thinking has shifted to the impediment of your CSF flow. If you were dismissed due to size I would suggest highly to search out other medical professionals for second opinions. I was very lucky it seems to have a fantastic neurologist that recognized the symptoms and referred me up to Stanford for my care. However, I developed tinnitus post decompression versus having it before hand. I'm currently working with my neurologist and PCP to figure out the underlying cause. Hopefully this helps you out some.

 

[Gman]

Hello All in this thread. I had my diagnosis and decompression surgery back in 2015. My understanding is now the actual size of the herniation isn't necessarily what causes the symptoms the thinking has shifted to the impediment of your CSF flow. If you were dismissed due to size I would suggest highly to search out other medical professionals for second opinions. I was very lucky it seems to have a fantastic neurologist that recognized the symptoms and referred me up to Stanford for my care. However, I developed tinnitus post decompression versus having it before hand. I'm currently working with my neurologist and PCP to figure out the underlying cause. Hopefully this helps you out some.

If I may ask, what was your herniation in mm?
Fantastic to know you have some helpful doctors assisting you. I hope you get some answers. I am tempted to get a second opinion.