Hi. I recently had my GP call me back regarding my MRI results, and was told that I have a 3mm tonsilar drop with mild kinking of the spine. I was having the MRI because I was experiencing a black, inky aura in one eye that the ophthalmologist ruled out as having anything to do with my vision or eye structure. I was also having dizziness and an odd running nose even though I wasn’t sick. I never expected anything to come back on the MRI, but my GP referred me right back to my neruologist.
She said I do not need a sine MRI because the herniation is not at a stage to be causing these symptoms, that the aura cannot be caused by this condition since vision is controlled in a different portion of the brain, and that I shouldn’t be worried. She wants to do another MRI in a year.
Meanwhile, I am reading about this and seeing it can cause symptoms even at 3mm, and the more I read the more things sound familiar. Dizziness, dropping things constantly, a whooshing noise when I yell or cough, major light sensitivity. I wake up with numb arms frequently but always thought I was laying on them funny? Occasionally i will feel like my heart is going to beat out of my chest and get very lightheaded, but it passes and goes away.The most interesting to me is the brain fog. By the time my day has ended, its like I can’t even seem to form a sentence, and my eyes just feel as though they are too tired to focus. It’s starts at about 3 pm.
What I’m wondering is, is it reasonable for me to request the Sine MRI? Or should I follow the advice of my neuro and just relax? In my heart I feel like I know the answer but since the neuro said not to worry, my family is trusting that, I’m the only one who is worrying. I can’t tell if I’m overreacting and I’m truly not trying to assign symptoms where there aren’t any. Even though I’m dizzy my balance seems ok, Neuro exams are ok, and I don’t get tingling fingers/toes. So I don’t have ALL symptoms.
Any and all advice is so appreciated and I’m sorry this is so long!
If there is one thing I've learned it's that the symptoms don't match how far the herniation is. Mine is very slight, my daughters is 5mm. She has debilitating migraines every once in awhile while I live as a shut in for fear of worsening my symptoms. Right now I'm trying to block the pain and have painkillers for when it gets out of control. I'm not sure that everyone has all the symptoms, there are so many and everyone is so different. I showed signs of cord compression but they said it wasn't compromised? This disease is definitely still in the learning stages. I work with a pain doc and my PCP. I ruled everything else out that it could be. When I revisited my daughters' MRI that's when I knew that I had it too. The only advice I have is trust your instincts, if you don't like/trust a Doctor don't go back. Researching can be scary but knowledge is power. I definitely wouldn't advice researching it while your alone in a condo in Birch Bay, just my experience. :) Get a second opinion if you need to and a 3rd and 4th if need be. You may need to travel to find an expert in Chiari. There is a list of doctors on the website recommend by people on the website. Ask whatever questions you need to here. Whatever you're experiencing most likely someone else has too. Maybe not exactly like you but we definitely understand what you are going through. Most importantly you're not alone in dealing with this, reach out in time of need. We are always here for you. Good luck to you!
Sarah
I had similar situation and my second opinion paid off. Go with your gut you know your body. Get a second opinion cause it sounds like you might need one