I'm sorry!! I just read your other post- your symptoms do fit that of ACM. I know they told me to watch out for incontinence- It's good though that they're ordering MRI's of your entire back and brain.. It took me like 3 months to get em all done because they would only order one at a time!! Plus it's taken me longer because I found out I had it 2 days before I found out I was pregnant! They NS I WAS seeing told me I had to make a choice- me or my baby. Well, needless to say, I have a BEAUTIFUL 6mo old baby girl! And a new NS too! So now I start all my MRI's over because sometimes pregnancy can make the tonsils descend more (not alot though) and can make the syrinx grow, too. Which explains why my symptoms now are so much worse then before I was pregnant!! They actually dx'd me with MS then after the cervical MRI, changed it. The symptoms for both are VERY similar. But it's still a hard place to be- MS OR brain surgery.. Neither sounds fun!!
Well, I can't tell you a whole lot about it, except I have it!! Luckily mine isn't causing me problems-yet. I also have a syrinx, which is causing me ALOT of problems, so I will need the decompression surgery anyways. Basically it's a congenital birth defect, meaning you were born with it. Some people have it and have no symptoms. The major symptoms of ACM is headaches, neck-aches, ringing in ears, numbness in face and upper extremities.. But this varies from person to person. If you have a syrinx, which 50% of ACM patients have, then your symptoms will include your lower extremities. A syrinx is a block in your spinal cord caused by the brain blocking and putting pressure at the start of your cord. My dr explained it as having a "straw" in your spinal cord. Do you ( or who your asking for) have a syrinx? Those can cause much more problems than ACM since it can continue to expand and cause permanent nerve damage. I am just now starting my journey on this, so these are just a few things I've found so far. There are great sites to check out- ConquerChiari.com, ASAP.org, and The Chiari Institute (google that one for the address). Sheesh that was long!! HTH!