I am 4 months post decompression surgery. So prob not fully recovered (if there is such a thing). I've had SO MANY symptoms for approx 30 years now (the worse being debilitating headaches), sadly not one dr seen the chiari (maybe it wasn't apparent or they weren't looking for it). The result has been the treatment for the symptoms ie, 2 back surgeries, knee, hands, esophagus surgeries and a lifetime of prescription drugs (averaging 10-12 pills twice a day). They found the chiari by accident when I went ER for one of my headaches that I'd gotten used to but wasn't responding to any of my normal medications. I saw 2 neurosurgeons (want at least 2 more opinions) and the second one seemed to fit my into my criterior. He had me in for decompression surgery within a month and of course when he got in there it was worse than he'd thought. Most people with this have a fluid build-up. I however had the opposite, there was absolutely now fluid going to my brain so I have some permanent damage but very lucky otherwise. I now have some of the symptoms returning, including some new ones.
Presurgery symptoms were migraines, tight, squeezing, pressure in back head between ears w/ a burning feeling between ears, knumbness, tingling in hands (like carpal tunnel) and feet, excessive perspiration, virtigo and stumbling, loss of balance, fuzzy vision, trouble swallowing sometimes with a hoarseness , really bad memory loss (mostly short term), fatigue, sleep apnea. I'm sure there's more but you can see why it's misdiognosed
I have lived with ACM for 25 years. I had headaches for 11 years before being diagnosed 14 years ago. the symptoms I have were -headaches(not anymore). I do have these symptoms-numbness and stiffness and pain in the lower extremites(feet and legs),chronic fatigue, can't sleep though,mild depression (on meds) dizziness ringing in the ears, shortness of breath attacks often passed off as panic attacks,excessive clearing of the throat with no obstructions,bladder weakness, clonus in my feet. There are also others - sleep apnea, neuropathic pain, vertigo(dizziness in the head), tehering of the spinal cord, visual diturbances, impaired fine motor skills,muscle weakness, palpitations. Some of these are often passed off as MS, Fibromyalgia, chronic fatigue and Pyschiatric disorders. Many times over the years doctors have looked at me like I'm crazy. After much research and one doctor who cared I now know I am not crazy and had a good reason for my complaints. Some people still look at me like I out to lunch until I show them my big zipperhead scar.
The connective tissue disorder is Ehlors-Danlos (sp?). Chiari is a herniation of the hindbrain that can obstruct CSF flow.
Isn't that caused by someone having a connective tissue disorder?
Oh where to start!! Headaches are the number 1 symptom.. You can check out ConquerChiari.org for a whole list of symptoms... Everyone is different, and the symptoms are the same for alot of neurological issues. If I listed all the possible symptoms here, you'd need to take a week off work to read em all!!