I went in and seen the NS yesterday and he said that yes I do have CM but it is only 1-2cm and that this is not what is causing my pain, seems I have a buldging disc that is also protruding my spine and he seems to think this will fix my issues. Once I was told about CM I started researching it and noticed that some symptoms I been having since Nov 2010 seem to be related to CM, at what point are symptoms noticed? Am I crazy and only thinking I am feeling these symptoms now that I been told about CM or can anyone relate to this? I am so confused right and befuddled!
We, Chiarians, frequently find ourselves confused and befuddled. Because Chiari is rare and the symptoms are so varied, treatment options are widely varied. After I had decompression surgery, my neurosurgeon told me that my symptoms should all vanish. Which is not the case, the nerve damage was already done and it is permanent in my case. Please remember that neurosurgeons, for the most part, are all about surgery. If they don't see a clear cut case for surgery they are likely to poo-poo your symptoms. You might want to seek the advice of a neurologist, a good one will know about Chiari and the possible treatments for the symptoms. A great one will also recommend some non-Western, non-invasive therapies. A great one will also never belittle your symptoms but will categorize which symptoms are aggressive and most treatable. By the way, neither my neurosurgeon nor my primary care doctor suggested I see a neurologist. It just made sense that a chronic neuro condition would be best served by a neurologist. Luckily, I made my primary care doc see the sense in this.
Best of luck!
Try to find a neurologist who has a good deal of experience with chiari. I have so far seen two really bad ones, one who insists that 8mm is too small to cause symptoms and another who says chiari NEVER causes symptoms(which everyone here seems to know is not true!). Good luck in your search! This is a great group and has really helped me deal with these crazy symptoms and the misinformed doctors.
There are tests that you can set up with the help of your NS to determine whether CM is causing you issues. It will depend on what your NS really thinks or knows about CM but I can tell you about my experience... Obviously it all starts out with your MRI confirming your CM. CM has been scientifically linked to certain disorders, and these are the tests I'm talking about. I recently had a Barium Swallow Test (dysphagia), and this weekend I am having a sleep test - looking for any sign of sleep apnea. I also had a 24 hour holter-monitor test to check my heart. I'm sure there are other tests but this was the plan my group of Dr.'s agreed upon for what they call "objective evidence" rather than "subjective" which could basically be described as 'what I complain about.'
These tests may seem like they aren't based on your main symptoms that are really affecting your quality of life but that doesn't matter. The 3 tests I listed are certainly serious symptoms but the main point I'm trying to make is that they have been proven to be linked to CM and are accepted as reason to proceed with surgical treatment.
Good luck and much love to you <3 Try not to stress too much :) You are not alone, especially in the state of confusion you are currently in. We have all been there or are still there haha :) Just be strong and keep up the good fight, and you will find the help you need :)