I have a rare condition called Arnold Chiari Malformation(ACM). I have other neurological problems
that were found when I was younger (hydrocephalus and spina bifida). Some people are not
diagnosed until they experience trauma (such as a bad accident), most of them have Chiari
type 1 (I have type 2). Chiari type 1 is harder to pinpoint and misdiagnosis does happen. In most cases, the onset is due to a car accident or chiropractic adjustment. In 1998, even though I was having *little pains here and there*, the pain set in due to going in the shower and turning the water on...that's it. Not, I fell in the shower, burned myself in the shower or anything more dramatic, I just went into the shower and as soon as the water trickled on my body I was ready to down.|
I have been asked to set up this page to spread the awareness for those who are diagnosed to find help and for more medical research to assist in finding a treatment for ACM. I had a bad time when the pain was excruciating
(the typical electrical shock pain that started in my neck and shoulders and went down my arms)
and I went and had decompression surgery in 1998 in New York, at the time Dr. Thomas Milhorat was located at the Long Island College Hospital. He is now head of of the Chiari Center ready to open in Manhasset New York (North Shore University Hospital). Would I have the surgery if the pain came back as it did in 1998? Yep, in a heartbeat and done by
the same medical team because I am convinced that they are the absolute best.
Update on me:
Well, the pain that was manageable is worsening. This is not due directly to my CHIARI, but oddly enough, I'm getting the same symptoms due to Communicating Hydrocephalus.
I was always a little sore from the 1998 surgery (but I AM TALKING BRAIN SURGERY **smile**)
so I thought it would pass. After a few falls, I am now on Leave of Absence from my
job until everything settles down again. My headache has increased, but is no where near the pain prior to the 1998 surgery. Once again, the shoulders and neck are in absolute pain while the headache is running a close second. The daily routine is challenged due to my inability to concentrate or think. After my fall, I would wake up and not know where I was. That seems to have passed for now, but I still can't spell words well (and I used to be a good speller), I lose track of numbers when I'm adding or subtracting...daily schedules that change mix me up. The nausea, balance and dizziness is acting up. It's odd though on the days my head is pounding, my concentration is bad, but my dizziness and nausea is minimal. When my concentration is bad, the headache is not all that bad. If dizziness/nausea is the main problem the headache doesn't seem to be so bad. Either way, the concentration is not where it used to be. I CAN do alot of things, like I still enjoy making webpages (and it helps to keep my mind focused...ummm except for on the days when I can't do much of anything...then everything is put on hold), making crafts but my thinking skills are better sitting and the job I'm trying to return to requires me to stand and walk around. With the dizziness, I spend most of my day sitting or lying down. I have not had a car accident, but little trips, stumbles or falls make it worse. My balance is effected when I go from a carpetted surface to a floor. I feel very vulnerable.
My MRI'S and CT scans look pretty much the same from a few years back when I first started having symptoms and haven't deteriorated since the decompression surgery. If I hadn't had a determined neurologist in New York who took a very thorough Lumbar Puncture, all the tests would've said "there's nothing wrong with me". But the Lumbar Puncture was the key in getting the right diagnosis.
July, 2003-Well, I am now the proud owner of a brand new programmable shunt set at 180. My body is still adjusting, but all for the most part the worse is over...well, until the next neurological adventure...but if someone decides I've had my fill of neurosurgery problems, I'd be a happy camper. With a little luck, I will be able to return to work by the end of this month. This is a pretty cool shunt in that it gets reprogrammed or "tweaked". The downside is, anytime I go for an MRI, I have to get my shunt reprogrammed or the dreaded spinal headache will re-occur and I've been told, it's worse than any other spinal headache I've had...and I've had some real bad ones.
I had a little detour on the road to recovery, the tube started pressing against my abdomen leading and it opened up. It goes under the category of making sure you take care of yourself after surgery, if you want the details, please write me to the address below.
**I don't know if I have a strange sense of humor or if this just struck a cord after meeting with so many neurologists who really do not understand Chiari and the frustration that follows in finding the truth, but I found this while reading my daily digest for Chiari Support. It pokes fun at those in the medical field. Thanks, Joanna! Click here
I appreciate that you took the time to read this page. It is my hope that it helps
someone to get information. I am generally a happy person with what people used
to call "a great sense of humor with an infectious laugh"....** I kinda like that
**. I do not think I whine unncessarily and apologize if that's how I came across.
Ongoing pain does that sometimes.