Went to my last test today to see what is wrong with me. This one was with a Neuro-Opthamologist. My Neurologist wanted me to see this guy because he does Neuro and Eyes. I gave him all of my test results to date, which all find nothing wrong with me. I told him I have Chiari. I have blurred vision, dizziness, headaches, balance issues.
He did a "standard" eye exam with the same equipment that my Cataract Doctor has already tested me on. He said I have 20/20 vision (I'm assuming with glasses for distance) and nothing is wrong with my eyes.
YIPPEE.
Then he went on to tell me that my symptoms are due to A. Psychological problems or B. the headaches. I said that the headaches didn't start until several months after the blurred vision started. He just said to talk to my Neurologist and gets pills for my headaches.
And the Dizziness and Balance problems and Blurred Vision and Photosensitivity, and Disorientation are ALL IN MY HEAD??????????
After 3 MRI's, CATSCAN, LUMBAR PUNCTURE, TILT TABLE TEST, HEARING/BALANCE EXAM, and NEURO-OPTHAMOLOGY EXAM, I am beginning to think they will NEVER FIND OUT WHAT IS WRONG WITH ME!!!
Lindy, I'm sorry this is so frustrating for you. If it "isn't your Chiari" then you need to be ready to discuss some of the potentially alternative causes with your medics. Take a look at this discussion for some thoughts: http://www.chiarisupport.org/forum/topics/what-other-than-chiari-could-it-be. Thinking of you.
I bet your symptoms are not due to a very active imagnation! If your current doctors can't provide any explanations, you should find ones who will! If you have the Chiari and everything else is fine, then chances are, the symptoms are caused by Chiari or a comorbidity(I have to admit- I'm not sure I fully understand the term "comorbidity", but I've heard a lot about them in CSF videos).
If you haven't seen a psychiatrist, you might do that to get a piece of paper saying your symptoms aren't caused by something psycological. I did that, the psychiatrist put me on antidepressants, when she saw they didn't improve anything for me, I got the diagnosis of neurasthenia(If I remember correctly) that was caused by some other underlying illness. In addition I got my sleep problems fixed with sleeping pills(that I'm no longer on since november).
If that is neccesary for doctors to dig deeper in your condition, then do that! Do whatever you need to do to get better!
Rare illnesses are never easy.
Stay strong, advocate for yourself and never give up! You will find answers!
Find yourself a neurosurgeon who specializes in Chiari malformation and forget the. Neuro they will not help you. They will only make you feel crazy. My 23 yr. Old sons only symptom was vomiting. Have taken him to Dr.s for 2 1/2 years finally found a neurosurgeon in NYC who found a 5 mm compression of the vagus nerve on his MRI I THANK GOD WE FOUND THESE GUYS because my son just developed SEVERE HYPERTENSION and surgery scheduled for 2/24/16 Wiell Cornell brain and spine center in nyc is fantastic. Theses guys are a true blessing to Chiari patients. Good Luck.
Find yourself a neurosurgeon who specializes in Chiari malformation and forget the. Neuro they will not help you. They will only make you feel crazy. My 23 yr. Old sons only symptom was vomiting. Have taken him to Dr.s for 2 1/2 years finally found a neurosurgeon in NYC who found a 5 mm compression of the vagus nerve on his MRI I THANK GOD WE FOUND THESE GUYS because my son just developed SEVERE HYPERTENSION
and surgery scheduled for 2/24/16 Wiell Cornell brain and spine center in nyc is fantastic. Theses guys are a true blessing to Chiari patients. Good Luck. Get a copy of your MRI get in touch with a good specialist and the majority of these DRS will not even let you make an appointment until they review your MRI CD