First off, I want to state that I really like and trust my NL. She worked with Dr. Oro himself for years in the Chiari clinic at the University before he moved to where he is now. So she is well versed in chiari.
I had a CINE MRI on Wed and she called to tell me today that there was really good flow. I made sure that she read it herself and not the radiologist. It showed my fluid flowing around the "obstruction" (as she called it) with no blockage of the fluid itself. So that's a yay! :) BUT it doesn't change any of my symptoms. I still feel like Crap with a capital C every single day.
She said it's possible I have this mega migraine that is just going to take a long time to figure out and find the right meds to get to the bottom off. We did do that nerve block injections two weeks ago today which did NOTHING for my headaches at all. Topamax isn't working at all. I agreed to double the dosage for a couple of weeks since it isn't giving me side effects either. I am willing to try anything if it will stop all this pain! :( I hate feeling like I can't function.
So I am curious...can chiari still cause all my problems even if I have good spinal fluid flow? I mean, she said herself that my MRI shows my brain matter is crowding my spinal cord. So couldn't that in itself cause this pain? My neck, my shoulders, and my head, ugh!!! Does chiari only get bad if your fluid is obstructed? I'm confused how this works??? Please help!
You must be confused with all this..My NS told me to keep in mind that an MRI and CINE MRI is only a "snapshot" . He also told me they are good tools for Dx but there could be 'diminished flow' that the CINE didn't show..once again, b/c it is only a 'snapshot'...His words..And low and behold...My CINE came back pretty good...'diminished CSF'..not complete blockage...
Once he 'got in there' he got a better view..obviously!!! and after surgery told me the flow was worse than the CINE showed..He also explained that once everything else is ruled out through though testing..such as MS, Lyme Disease, Auto Immune..ect..and the MRI shows a Chiari Malformation and the symptoms are, as he put it,'Significant'..then he goes ahead with surgery..My NS is fairly conservative and I feel as though he knows his stuff..Also, keep in mind that the size of the herniation is not as clear cut as once thought...use to be the 5mm rule....if under 5mm...patient should not have Sx's..now they found this is untrue.
Yes Lori she is conservative too. And I really want her to be. I dont want some scapel wielding nut job. I really trust her judgement. Thank you for explaining that to me. It does make it make more sense.
lori said:
Hi Tasha,
You must be confused with all this…My NS told me to keep in mind that an MRI and CINE MRI is only a “snapshot” . He also told me they are good tools for Dx but there could be ‘diminished flow’ that the CINE didn’t show…once again, b/c it is only a ‘snapshot’…His words…And low and behold…My CINE came back pretty good…‘diminished CSF’…not complete blockage…
Once he ‘got in there’ he got a better view…obviously!!! and after surgery told me the flow was worse than the CINE showed…He also explained that once everything else is ruled out through though testing…such as MS, Lyme Disease, Auto Immune…ect…and the MRI shows a Chiari Malformation and the symptoms are, as he put it,‘Significant’…then he goes ahead with surgery…My NS is fairly conservative and I feel as though he knows his stuff…Also, keep in mind that the size of the herniation is not as clear cut as once thought…use to be the 5mm rule…if under 5mm…patient should not have Sx’s…now they found this is untrue.
