Possible Ciari Malformation - going to Baylor Medical in March
Posted Feb 06 2010 10:12pm
Hi everybody, I'm new here and I've been down in the dumps and in pain. I've missed a lot of work lately, but my employer is great, they've allowed me to work from home when needed. Out of frustration of doctors not knowing what is wrong with me and pushing all kinds of medications (which I've quit all meds and started on prescription strength vitamins), I decided to get out ALL of the testing records I could get my hands on and review them. Some from 5 years ago! The most recent MRI of the brain I had was what struck me as GOLD. Here's the story:
In May 2009 I had an MRI of the brain done, yet again. By November 2009 I had already changed Neurologists again, I just can't seem to find one who is willing to do the research. My new neurologist asked for those records so my husband showed up to the pick up the films (on CD). A tech pulled him aside (knowing he could get in trouble for doing so) and urged my husband to look into a 4 mm cerebellar tonsillar ectopia (which is 1 mm away from being labeled Chiari Malformation). He felt all my symptoms stemmed from this. I looked up cerebellar tonsillar ectopia that evening and couldn't find anything really informative and forgot about it. I never mentioned it to any of my doctors, I just dismissed it. As I mentioned earlier, I looked at that MRI report again and did another search. But this time I decided to put in keywords like: cerebellar tonsillar ectopia known as. Wow, after adding those two extra words, Chiari Malformation filled the search engine and I went to reading. I couldn't believe what I read, it was as if God talked to me and said enough is enough, here is your answer. Now I have not gone to the doctor yet because I've only known about Chiari Malformation for four days. Last week I went back to my primary doctor after the Neurologist released me from his care.
I threw up my hands in frustration. My family doc was shocked to find out that my Neuro had told me he didn't need to see me any further and had no recommendations. You see, I had told the Neuro my symptoms were always worse the week before my menstrual period. So he set up an ambulatory EEG for that week in November. Well wouldn't you know, I missed my period!!!! I couldn't believe it, I haven't missed a period since being pregnant with my son in 2002. But instead of trying again in December (where I had a heavy, long period and very rough time) he relied on the November results, which were normal. With that said, I have had two abnormal EEGs and docs can't figure out why. My family doc is intent on getting to the bottom of my problems and seems genuinely interested. He gave me a few choices: Find a new Nuero in town (San Antonio, TX), go to University Hospital in San Antonio, TX, or see Grade A docs in Houston, TX at Baylor Medical. Well I had to go with Grade A of course! But after reading about Chiari Malformation, I'm very tempted to see the docs at The Chiari Institute in Great Neck, NY (http://www.chiariinstitute.com). I don't know what to do, but I need to make a decision fast because I already have an appointment at Baylor for March 17th, which is Spring Break here in San Antonio. I felt it was perfect timing since my husband and my kids are out of school that week. So now I'm thinking of doing my best to get into NY that week instead, but still thinking about it. What are your thoughts???
Disorders: Sleep Apnea Fibromyalgia Reynaud's Syndrome possible Chiari Malformation
General Symptoms: Episodic left unilateral body muscle achiness, pain, stiffness, tingling (and I mean from top of head to toes, sometimes at the same time and sometimes different parts of body, including fingers/hand) Left shoulder stiffness, pain, knots Episodic dizziness Episodic left eye pain, pressure, redness Daily multiple severe short-lasting headaches Daily headache, lasts all day
Weird Episodes: Episodes of: all the above but enhanced, slow to react, unable to concentrate, talk slowly, slurred words, weird eye movements, droopy eyelids, blurry vision, extreme dizziness, feeling of fainting, and possibly more that I just can't remember. These episodes do have triggers: Week before, during, and week after Menstrual Cycle (major); Physical Activity (major, worse during period); hunger pains or empty stomach (during period); lack of sleep; laying on left side, standing up too fast, bad body position, and possibly more.
Here is my MRI. Now I am almost sure I highlighted this right, but not 100% sure, so if it's wrong, let me know please!
So as you can see, I'm a woman on a mission. I'm really hoping my appointment with the doctor's at Baylor will shed some light on the last 5 years of my life!!!!