So my journey started five years ago because of recurrent vertigo which finally led to my Chiari DX this summer. I don't have CINE of my cervical spine until next month, and I meet with the NS at the same time. My most bothersome symptoms for the past few months have been chronic morning severe headaches upon waking that seem to go away on their own shortly after getting up (it's the "getting up" that's hard. :-) I thought they were migraines until I realized that the pattern was that they resolved upon rising... I also have trouble with double vision upon waking up that doesn't get better until I actually get up out of bed.
Also, I am having issues with severe numbness in my arms/hands/shoulders waking me in the night and early morning hours. It seems to take a while for the feeling to come back, and when it does, the muscles are extremely painful (esp. in the biceps). This happens on a daily basis.
I had a cervical spine MRI a year and a half ago in an open MRI, and no syrinx was seen at that time.
Do these symptoms sound Chiari related in your experience, or like something else? I'd like to know what questions to follow up on with the NS at my appointment in case he says the CINE is ok...I only have a 6mm "rounded" ectopia, so he was not sure at my first appt. in Sept. if Chiari was the main issue.
Nice to meet you on the site, and glad to help if I can. I agree with Mandy above about Sleep Disorders, which can also be due to Chiari.
Yes, I believe the Vertigo, HA, and blurred vision have been described, and the fact they resolve with rising position could occur with Chiari, although not textbook, and speak against Migraine and tension kinds. The arm and shoulder numbness could be Chiari related as well, and u don't have to have a syrinx for symptoms. I suggest you also get checked for CCI- cran.cerv. instability; and EDS, because that can occur with Chiari. Do u have hypermobile joints?
Don't want u to lose faith in ur Clev. Clinic NS, but frankly, if mine said, well, u only have a 6mm, nicely rounded herniation, so just don't know, I'd be on the phone scheduling a second opinion in the parking lot. Since the Millhorat paper was published, it's well accepted that herniation size doesn't represent the magnitude of symptoms/signs. That being said, I also read CINE exams are notoriously examiner and technology dependent, so results can be inconclusive and u still have Chiari blockage. Gathering information, and going for a few key opinions should help u figure next steps. Mayfield down in Cincinnati is another place to try.
Thanks for the responses. As far as sleeping goes, I am usually a side-sleeper, but I often wake up on my back. I can say I never sleep on my stomach. I have wondered about apnea because I do snore (or so I’m told, lol ;-), but so far no doctor has acted like that’s something we need to investigate, and my first NL was the head sleep neurologist of the local hospital. Go figure… As far as Vit. D, I have been taking supplements of D-3 for the past couple years. I do not know if I have any CCI or EDS, never been tested and I’ve only ever read about those things on Chiari sites. No doc up to this point has mentioned either of those things. I think I do need to ask about EDS, though, because I had major issues in my lower body during my 2 pregnancies due to problems with my “connective tissue turning to jelly,” to use the words of my physical therapist. Also, when I was born, one of my hips was out of socket, and I spent the first six months of my life in leg braces. At this point in life I’m feeling rather stiff and sore, anything but flexible, but I do have issues sometimes with my legs and knees . To those of you with EDS knowledge, does any of that sound like signs of EDS? Should I just flat out ask the NS about it? Not sure who else I would see to get checked out for EDS…
Back to the numbness and headache…I’ve been relaxing in a recliner this evening watching some TV, and my left arm did the painful, tingling, falling asleep thing, and I notice that have been having a headache in the base of my head and radiating down the neck. So pretty much similar symptoms, but obviously sleep apnea is not an issue in this situation. Could it be positional? Gosh, this is a miserable feeling. :-/