Hello everyone! This is my first post, and I’m not quite sure this is the proper board for my question, so please feel free to let me know if I should move it elsewhere. I have had the same symptoms (in varying degrees) since I was in high school, which has been 10 years this year. The symptoms that stand out most are: Dizziness (to the point of passing out a times), headache, a feeling of pressure in my ears, pins and needles feeling that starts in my left hand and goes all the way up and down the left side of my body (face, neck, chest, abdomen, etc), muscle fatigue, general fatigue, and blurriness/occasional double vision in my left eye. After a misdiagnosis when I was younger, I decided to have it looked into again and was told that Chiari 1 (7 mm) was found while reading my Cervical MRI. My brain MRI came back normal, however, so my neurologist said that the Chiari was no big deal and that it wasn’t causing my symptoms. He has now ordered an EEG and is sending me to a neuro-opthamologist to figure out the vision issue. My question is, is it possible to have Chiari 1 cause all of these symptoms and not have it show up on a brain MRI? I feel like I’m crazy because I see that this is something they have seen, and everything seems to add up, but the neurologist says otherwise. Thank you so much in advance for any info you can provide!
?Cervical MRI versus ?Brain MRI … I would suggest that you secure a referral to see a neurosurgeon. You do not need to commit to the idea of a surgery, but a neurosurgeon has a better skill set to read the MRI’s and determine where you are at. I have seen a number of neurologists and not one of them have looked at the imaging. They have only read the radiologist’s report. Who knows how skilled the radiologists are at determining Chiari?
I also saw a neuro-opthamologist. Unfortunately, he was a bit pompous and dismissive of my concerns. I am sure that you will not have the same experience! Be sure to be clear that you are having vision problems and that you would like to get to the bottom of things. If he does not feel that Chiari could be a source of your vision concerns what else could be the source? He should be able to analyze the imaging. Maybe he would look at it with you in the room and explain things.
My personal favourite thought that I need to remember is that just because whichever specialist you are seeing does not know what the problem is does not mean that you have a psychological problem. If folks are skirting around the issue or out right saying it, I have found it helpful to tell them that I have seen a psychologist and that they do not feel that my symptoms are psychological in nature. It helps specialists to keep their thinking cap on instead of dismissing you and trying to shuttle you out of the office.
In terms of your symptoms, of course they can be related to Chiari. The list is long. The medical journey is not always smooth in getting answers, though, and lots of things need to be checked out. Size of CHiari is only one issue. Be sure to discuss blows to the head, whiplash, and falls as these all can increase the vulnerability of your brain to the presence of CHiari and stress on all the structures in the foramen magnum, no matter the size.
Just for giggles, check out a list of all the structures that are in the foramen magnum. Ask folks what happens when the accessory nerve is compressed, what about the vertebral artery, or the spinal cord itself? Cerebral spinal fluid is not the only thing in there. There is a reason why Chiari symptoms are so varied and multiple.
Good luck in educating yourself in all things Chiari but also in navigating the health system
Thank you so much for your reply! I will definitely think about a consult with a neurosurgeon to discuss what my scans look like. In the end of the day, if Chiari isn’t what’s causing all of this, at least I would like to know that a dr read my scans and not just a report on the scans.
Also, thank you for the list of other topics to research! I find it so interesting how many systems connect and how their functioning properly depends on one another.