Well, I am pretty confused about my symptoms after an MRI tell was read to be negative. I’m also sorry for posting on Christmas Eve. I know that you aren’t medical professionals, but my symptoms are getting pretty scary and I need advice. I also posted on another form and was told that it looked like my flow was blocked in one image and that I have a mild herniation with a retroreflexed odontoid bone with a thickened odontoid capsule, which means I might have CCI too. I have headaches worsened by sneezing and straining, occasional leg weakness and one day I woke up with a paralyzed left leg, somehow the colors are muffled in my left eye now( I failed a color vision test at an eye doctor), I think I nystagmus in my left eye with straight lines moving when I look at them, I get dizziness when getting out of bed sometimes, sometimes my lips go numb and my arm muscles are a bit weak. My heart rate goes up to 130 to 140 often and no doctors have figured out how to fix it. I also think I may have CCI because of the bone thing, but I don’t know how to approach getting that fixed either if I have it. I also have Ehlers-Danlos syndrome. Do you guys have any advice? I can only post one image.
Hey Rose,
As you state, we’re not Dr’s, but it sounds like you have a number of symptoms that ‘could’ be related to chiari but then ‘could’ be related to a number of other conditions too. Trying to pinpoint via a single image is near on impossible, this really is something that only a qualified neurologist, with a full medical history and the corresponding medical tests and scans should be giving advice on.
I have an issue with in intracranial blockage and hypertension, but I do not see any such fluid retention in that image, but again I’m no Dr and nor am I a radiologist, so my information is VERY incomplete. You NEED to get a more comprehensive opinion from the people who know and that’s the dr’s.
I am not trying to discourage you here, not at all, but if you followed a patient’s advice and as a consequence things got worse (much worse) you’d be kicking yourself forever and a day. It would be much, much better for you to obtain the correct information from the correct people. Those people are the dr’s.
Merl from the Moderator Support Team
Hello. I am not online much, but I check-in with the site on occasion. I can empathize with you on your frustration, but it can often worsen your overall symptoms and pain. This site is a great place to find you are not alone.
I have had Chiari decompression surgery and we have a family history of Ehlers-Danlos. I have found prior to diagnosis and even after that ongoing Chiropractic care helps tremendously. And a couple of years ago I changed from a family/general doctor to a doctor of internal medicine; they are more investigative and thorough with medical care.
At the Mayo Clinic in Rochester, MN, last year I was told my sensory portion of the brain is malfunctioning. My vitals would go out of control abruptly and my body goes into an aurora where I feel disconnected from it. The neurologist and neurosurgeon said there was no surgery to help this and that a medicine would be the only source of resolve.
So I was told limited if any exercise and it was suggested I take a medicine that is used in patients that have fibromyalgia. I have followed their advice and both have helped.
There is never one source of resolve. What works for one person is different for another; an example is I never presented with headaches. You must be your own best advocate and decision maker. Continue to seek input and find what works for you.