In the last couple of months since my (possible) Chiari symptoms started, I've had issues with random muscle twitching. Occasionally, if I'm lying down and my head is in certain positions, or if pressure is applied to the back of the right side of my head, I'll start getting random muscle twitching... not enough to be considered a seizure, and usually it's just one limb at a time, but yesterday evening, while I was lying down in bed with an ice pack on the back of my head, I had a twitch where both my legs jerked up like they were trying to curl me up in the fetal position. Just curious if anyone else had this same issue or similar.
I've also starting having some issues with pain shooting down my right arm and/or leg, once to the point where I was having some issues driving on Friday. I was concerned as to whether I could walk, but once I got out of the car and tried, I was okay. Another new symptom I've started to have is occasional numbness and slight weakness in my right hand. Yesterday, I also rolled my right ankle TWICE in one day, which has never happened before, and today, I'm noticing some numbness in my right foot.
I have a tender spot on the back of the right side of my head, which my Neurology PA seems to think is a muscle knot, but I'm not so sure on that. I really hope I'm not slipping to a point of rapid deterioration already, because I still have a little less than 2 weeks until my follow-up appointment with Neurology.
I've had symptoms just as you described (usually my right side) since January. You aren't alone. My MRI and Diagnosis was May 1. I don't know if it's rapid deterioration (I hope not) or what's normal for the time frame. I'm new to this too. Hope that helps a little.
I did have an MRI on May 12th, Emmaline... wasn't too happy about what they wrote in the impression though. Here's what they said on the whole thing:
"Sagittal T1, axial diffusion, Wen bold, T2 and FLAIR sequences are provided. The cerebellar tonsils have a rounded configuration with the tonsils extending 4 mm below the foramen magnum consistent with cerebellar tonsillar ectopia. No significant crowding at the foramen magnum is demonstrated. The odontoid has normal size and configuration. There is no evidence of ventriculomegaly. The cisterna magna is noted to be small. The visualized upper cervical cord to the lower T2 vertebral body level demonstrates no obvious syrinx. The sulci are symmetrical with no intra-axial or extra-axial masses or pathologic fluid collections and no evidence of mass effect. The ventricles are midline in location. There is a single T2 FLAIR hyperintense focus in the left frontal lobe adjacent to the left frontal horn measuring 6 x 7 mm in size. This is nonspecific. The brain parenchyma demonstrates no additional signal abnormalities. Expected flow voids are seen in the major vessels at the base of the brain. Diffusion sequence demonstrates no acute ischemia. The corpus callosum, pituitary gland, and brainstem are unremarkable. The orbits and sinuses are unremarkable.
IMPRESSION:
1. Findings consistent with cerebellar tonsillar ectopia without convincing evidence of Chiari 1 type malformation.
2. 7 mm nonspecific T2 white matter hyperintensity in the left frontal lobe. This can be seen with sequela of migraine headache, diabetes, hypertension, and prior insult from vascular, metabolic or posttraumatic etiologies as well as demyelination. Consider progress MRI in 1 year's time for surveillance."
I may end up self-referring to Dr. Oro up in Aurora, because I doubt I'm going to get any real help within the military network. Might try the magnesium supplements too in the meantime, see if that helps with my twitches... I wouldn't be surprised if that was why I usually wake up so tired.
Well, my CT back on April 3rd showed 5mm, as opposed to my MRI showing 4mm, but my Neurology PA said the CT showed 6.5mm... not sure which to go with on that.
I didn't see anything about a specific measurement on the Chiari Care Center's website, but I do have Dr. Oro's book on the way here, so maybe that will say something... ordered it on Amazon.
Whether the herniation is 1mm or 20, called an ectopia or Chiari, it is causing symptoms and that is what should drive treatment, not size. If a physician gets hung up on size move on to another NS!!!
Oh believe me jcdemar, if they don't do anything to help me at my next appointment, I am definitely seeing somebody else. What's really sad is that I haven't even been seeing a NS. My provider right now at Neuro is a Physician Assistant... not even a full-on Neurologist!
I'll have to remember that, Nykki. Military providers are very good at the run-around game, which I know all too well from not only being in for over 6 1/2 years, but also working in the medical field while I was in.
I had the similar experience of finding a “spot” in my brain. The doctors had to do a follow-up MRI to make sure it wasn’t a small tumor or a small stroke. They finally concluded it was a vascular formation of a blood vessel. Please make sure you do the follow-up MRI they are requesting. Soon if your symptoms get worse. A spot on the left side could explain muscle problems on the right. (Nerves cross over). Please be well! Milo cat
Well, got Dr. Oro's book in the mail today, and I was somewhat relieved after reading what he said about Chiari I. Here's a direct quote from his book:
"Type I malformation has previously been defined as herniation of the cerebellar tonsils 3mm-5mm or more below the level of the foramen magnum, although we now know that some patients with less herniation or descent may still have symptoms."
This makes me feel much better about the possibility of seeing him for treatment, especially since the book was published in 2007!